Environmental Health Literacy PDF

Symma Finn · Liam R. O’Fallon Editors

Environmental Health Literacy

Symma Finn • Liam R. O’Fallon Editors

Environmental Health Literacy

Editors Symma Finn Population Health Branch (PHB) National Institute of Environmental Health Sciences Durham, NC, USA

Liam R. O’Fallon Population Health Branch (PHB) National Institute of Environmental Health Sciences Durham, NC, USA

ISBN 978-3-319-94107-3 ISBN 978-3-319-94108-0 (eBook) https://doi.org/10.1007/978-3-319-94108-0 Library of Congress Control Number: 2018951928 © The Editor(s) (if applicable) and The Author(s) 2019 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Dustjacket Reviews

“Environmental Health Literacy is vital for making informed decisions aimed at preventing illness and disease. This well-organized book offers readers an accessible introduction to environmental health literacy. It details the emergence of EHL, provides a range of case studies, and describes approaches being used to build EHL. It’s inspiring and a must-read for anyone interested in environmental health communication and community engaged research.” – Linda S. Birnbaum, Ph.D., D.A.B.T., A.T.S., Director, National Institute of Environmental Health Sciences and National Toxicology Program “As concerns about the effect of environmental change on population health continue to grow, so too does our need to understand and address gaps in environmental health literacy.You hold in your hands a comprehensive foray into the why, how, where, and when of increasing engagement with health effects of the environment.All stakeholders in this space – from researchers to risk communicators to the lay public – will benefit by having this volume at the top of reading pile.” – William M. P. Klein, Ph.D., Associate Director, Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute “In this book, Finn and O’Fallon provide a solid foundation to help readers understand key elements and challenges of environmental health literacy. They also provide recommendations to improve communications efforts so that the science translates to information the public can understand and use to improve and protect their health.” – Patrick Breysse, Ph.D., CIH, Director, National Center for Environmental Health (NCEH) | Agency for Toxic Substances and Disease Registry (ATSDR), Centers for Disease Control and Prevention “Our ancestors were experts at living in harmony with the land. Through research and discovery, we must once again become experts if we wish to live in harmony with ourselves. This book touches upon the importance of culture as part of envi-

Dustjacket Reviews

ronmental health literacy to ensure respectful interactions among all partners in the research process. It is a good resource for anyone working with tribal communities.” – David R. Wilson, Ph.D. (Dine), Director, Tribal Health Research Office, Division of Program Coordination, Planning, and Strategic Initiatives, Office of the Director, NIH “Environmental Health Literacyrecognizes that public health problems are heavily impacted by environment and are more likely to be solved in the community than in the clinic. This timely collection provides evidence that social and health sciences in partnership with an informed, engaged public whose intelligence, expertise, and right-to-know are acknowledged and respected are key to finding those solutions.” – Andrew M Geller, Ph.D., Deputy National Program Director, Sustainable and Healthy Communities Research Program, US Environmental Protection Agency

Introduction: Environmental Health Literacy

Abstract Environmental Health Literacy (EHL) is a recently emerged, distinct subfield of literacy that draws equally upon key principles and methodological approaches from the fields of risk communication, health literacy, environmental health sciences (EHS), communications research, and education (Finn and O’Fallon 2017a; Gray 2018). Although, EHL has obvious roots in health literacy, it is very distinct in its purpose and outcomes. For EHL focuses primarily on improving the understanding of affected communities about risks related to environmental factors rather than solely on an individual’s risk of disease, and on prevention rather than disease management and medical adherence. This focus on public health rather than disease management is consistent with the goals of EHS research to prevent environmentally induced disease. However, ‘affected communities’ are not monolithic in their demographics, and EHL has emerged during an era when there is greater recognition of the importance of cultural sensitivity in community-engaged research and the need for targeted messaging for specific subpopulations and audiences (Brugge etal. 2018; LePrevost etal. 2013; Lesch etal. 2009). As an emerging field, EHL is being variously defined, however the majority of these definitions refer to the progressive nature of EHL that begins with an individual’s understanding of the connection between environmental exposures and human health and proceeds to the ability to create effective public health messages and/or act on this understanding (Gray 2018; Guidotti 2013; Nutbeam 2009). For, similar to the stages of learning that have been delineated in the field of education, EHL is not a static achievement, but an evolutionary process (Bloom 1956; Finn and O’Fallon 2017a). This book explores the emergence of EHL, provides numerous examples of the specific audiences who benefit from EHL, and describes the various communication and visualization modalities that are being employed to raise EHL among specific subpopulations and audiences. Part I situates the book within the conceptual constructs related to health literacy, risk communication and public health education; describes EHLs relevance to environmental health sciences research; and delineates the challenges and successes to date in measuring improvements in EHL.Part II provides an overview of the types of stakeholders and audiences who benefit from efforts to raise their EHL; and Part III explores the wide range of communication and visualization modalities that are used to promote EHL. vii

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Background The roots of environmental health literacy first began emerging in response to an increased public and media interest in the environment in the 1960s and 1970s, the subsequent development of the scientific discipline of environmental health sciences and the increasing need to communicate the results of EHS research findings to affected communities (Brody et al. 2014; Ramirez-Andreotta et al. 2016a). Concurrent social developments during these decades included empowerment movements, such as patient empowerment that informed early health literacy efforts, and the rise of social health movements that reflected a shift away from a professional dominance of the research enterprise, to more collaborative approaches that engaged affected community members and grassroots community organizations in addressing environmentally-related health concerns (Brown et al. 2004; English etal. 2017; Finn and Collman 2016). The emergence of EHL can additionally be linked to the rapid increase in computer usage among the public in the 1980s and 1990s, the development of digitized methods for visualizing risk, such as Geographic Information Systems (Lahr and Kooistra 2010; Severtson 2013), and the availability of remote imagery that helped to promote understanding of the concept of the Earth as an ecosystem linking people and nature. Together these social, technological and scientific developments led to greater involvement of the public in EHS research and greater understanding of the impact that pollution had on human health, an initial stage of environmental health literacy (Finn and O’Fallon 2017a; D Fitzpatrick-Lewis etal. 2010). This understanding, in turn, led to the recognition and confirmation that the poorest, most politically disenfranchised neighborhoods, often among communities of color, faced disproportionate exposures to harmful toxicants (Eggers etal. 2018). To this end, the emergence of environmental health literacy can be linked with the Environmental Justice movement, increased interest in community based participatory research (CBPR), and later with Citizen Science efforts (Minkler etal. 2008; Ramirez-Andreotta etal. 2016a; Stokes etal. 2010). The Evolution of Risk Communication: The communication of environmental health research findings has evolved over time from generic risk messages aimed at the general public (e.g., Public Service Announcements), to risk messaging, educational modules, online games and mobile apps, and websites that are targeted to specific subpopulations, or segments of society, and delivered in a variety of modalities (Branco etal. 2015; Guidotti 2013; Korfmacher and Garrison 2014). In recent years, the delivery of environmental health risk communications has utilized the reach of social media and mobile based platforms to deliver information to a wider audience (G. L. Kreps 2014b; Neuhauser and Kreps 2003). In addition, environmental health risk communications have taken advantage of advances in visual technologies, such as GIS mapping, to deliver complex messages in an accessible manner that promotes environmental health literacy among the public (Kuchinskaya 2018; Lahr and Kooistra 2010).

Introduction: Environmental Health Literacy

There now exists a wealth of information on environmental health risks available to the public and the scientific community. Unfortunately, public information may or may not be evidence-based, there are no criteria for assessing sources of information or the appropriateness of content, nor whether the delivery (dissemination) of such information is understandable, effective and/or actually leads to prevention or mitigation of environmental health risks. Efforts to raise EHL and to measure improvements in EHL therefore benefits from utilization of health literacy, dissemination and implementation, and behavioral research approaches that evaluate the effectiveness of existing environmental health risk messaging and guide development of new messaging for specific audiences (Chinn 2011; Fung etal. 2018). Environmental Education and the Achievement Gap: Environmental education has also informed the growth of environmental health literacy. Classroom and informal education settings have long-served as positive venues for increasing understanding about the environment around us (Hursh and Martina 2011). Through the 1990s there was a growing awareness of toxicants in our environment, and yet there was a lack of education in classrooms about the effect of such exposures on human health (Cunningham and Stubbs 2003; Hursh and Martina 2011). Concurrently, there was a nation-wide realization that USA students were falling behind in scientific understanding compared to students in other countries (Moreno and Tharp 1999; Morrone 2001). As such, there was a need to develop materials to fill these gaps. Inter-disciplinary approaches were established to convey complex scientific information and engage students in hands-on, inquiry-based activities. These approaches have increased interest in STEM subjects and made environmental issues accessible, understandable and actionable (Korfmacher and Garrison 2014; Read etal. 2016). More recently, game-based learning has also been explored as a viable means for increasing critical thinking, creative problem solving and teamwork to address environmental sustainability and management issues (Branco etal. 2015; Madani etal. 2017). These STEM efforts have contributed to our understanding of EHL and how such approaches can serve to inform and inspire youth.

Book Chapters The chapter authors represent a range of expertise related to communications research, dissemination and implementation, environmental health sciences, health education, and social scientific research. The majority of the authors are investigators funded by the National Institute of Environmental Health Sciences (NIEHS) who have developed methods or adapted existing modalities to raise the EHL of affected community members, health professionals, policy makers, and/or teachers associated with community-based EHS research studies. This book explores various aspects of environmental health literacy (EHL) from the perspective of investigators working in this emerging field and their community partners in research

Introduction: Environmental Health Literacy

• Part I explores the foundational aspects of EHL– its evolving definition and early attempts to adapt existing measures to track educational attainment in this field– and provides examples of the theoretical frameworks that underlie research to promote or improve EHL.Chapters include an overview and definition of EHL and its relation to health literacy and communications research; and a proposed model for measuring EHL and the use of this model among American Indian research partners. This section also includes a chapter with background information on the increased use of communication research approaches in environmental health science research using a case study of ways to improve the EHL of stakeholders related to risks for breast cancer from environmental factors. • Part II provides examples of the specific needs of target audiences and how EHL is being promoted to these distinct populations. This includes chapters exploring health professional needs, the benefits of EHL to empower members of environmental vulnerable communities, and the importance of raising the EHL and scientific literacy of students (i.e., STEM efforts). This section also includes a chapter describing research on the return of individual EHS results to affected community members. This exploration of the empowering aspects of EHL is a common theme in all of the chapters in this section. • Part III describes the types of communication styles that have been used to promote and raise EHL.These chapters delineate the value of culturally appropriate methods that have been successfully employed in specific subpopulations (e.g., Native Americans, Hispanics), and the increased use of social media to disseminate and collaboratively explore environmental health information. Part III chapters explore the broad range of communication modalities that are being used in environmental health sciences research, including written and computer based formats, visual presentations, artistic approaches and the application of a tactile approach that employ hands-on methods to teach complex environmental health topics such as epigenetics to students and the general public. These chapters describe these various methodologies used to deliver messages to distinct audiences and the challenges and successes of traditional written communications vs. the challenges of disseminating non-verbal visual, tactile and artistic representations of risk. Each chapter concludes with recommendations for research to improve communication efforts in the EHS and future directions for EHL.In addition, the book includes an afterword by the editors with overarching recommendations for the field of EHL based on the individual approaches described in the chapters and on the strategic goals of the NIEHS related to communications and education. Through these combined academic and governmental efforts, we hope to see EHL embraced as an essential component for empowering the public, and affected stakeholders, and for improving environmental health outcomes through this increased understanding. S.Finn L.O’Fallon

Introduction: Environmental Health Literacy

References Bloom, B.S. (1956). Taxonomy of educational objectives; The classification of educational goals. 1st ed. NewYork: Longmans, Green. Branco, M.A., Weyermuller, A.R., Muller, E.F., Schneider, G.T., Hupffer, H.M., Delgado, J., et al. (2015). Games in the environmental context and their strategic use for environmental education. Brazilian Journal of Biology, 75:114–121. Brody, J. G., Dunagan, S. C., Morello-Frosch, R., Brown, P., Patton, S., Rudel, R. A. (2014). Reporting individual results for biomonitoring and environmental exposures: Lessons learned from environmental communication case studies. Environmental Health : A Global Access Science Source 13(1), 40. Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello-Frosch, R., Gasior Altman R. (2004). Embodied health movements: New approaches to social movements in health. Sociology of Health & Illness, 26, 50–80. Brugge, D., Tracy, M., Thayer, K., Thayer, A., Dayer, B., Figueroa, N., etal. (2018). The role of environmental health literacy when developing traffic pollution fact sheets for puerto rican adults. Environmental Justice, 11, 40–46. Chinn, D. (2011). Critical health literacy: A review and critical analysis. Social Science & Medicine, 73, 60–67. Cunningham, W.P., Stubbs, H.S. (2003). Information needs related to teaching about air quality. Environment International, 29, 331–336. Eggers, M.J., Doyle, J.T., Lefthand, M.J., Young, S.L., Moore-Nall, A.L., Kindness, L., etal. (2018). Community engaged cumulative risk assessment of exposure to inorganic well water contaminants, crow reservation, montana. International Journal of Environmental Research and Public Health, 15. English, P.B., Olmedo, L., Bejarano, E., Lugo, H., Murillo, E., Seto, E., etal., (2017). The imperial county community air monitoring network: A model for community-based environmental monitoring for public health action. Environmental Health Perspectives 125, 074501. Finn, S., Collman, G., (2016). The pivotal role of the social sciences in environmental health sciences research. New Solutions. Finn, S., O’Fallon, L., (2017). The emergence of environmental health literacy-from its roots to its future potential. Environmental Health Perspectives, 125, 495–501. Fitzpatrick-Lewis, D., Yost, J., Ciliska, D., Krishnaratne, S., (2010). Communication about environmental health risks: A systematic review. Environmental Health : A Global Access Science Source 9, 67. Fung, T.K. F., Griffin, R.J., Dunwoody, S., (2018). Testing links among uncertainty, affect, and attitude toward a health behavior. Science Communication, 40, 33–62. Gray, K.M., (2018). From content knowledge to community change: A review of representations of environmental health literacy. International Journal of Environmental Research and Public Health, 15. Guidotti, T., (2013). Communication models in environmental health. Journal of Health Communication, 18, 1166–1179. Hursh, D., Martina, C.A. (2011). Teaching environmental health to children: An interdisciplinary approach. Dordrecht: Springer Science and Business. Korfmacher, K. S., Garrison, V., (2014). Partnering to reduce environmental hazards through a community-based “healthy home museum”: Education for action. Environ Justice 7, 158–165. Kreps, G.L., (2014). Achieving the promise of digital health information systems. Journal Public Health Research, 3, 471. Kuchinskaya, O., (2018). Connecting the dots: Public engagement with environmental data. Environmental Communication, 12, 495–506. Lahr, J., Kooistra, L., (2010). Environmental risk mapping of pollutants: State of the art and communication aspects. The Science of the Total Environment, 408, 3899–3907.

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LePrevost, C., Storm, J., Blanchard, M., Asuaje, C., Cope, W. (2013). Engaging latino farmworkers in the development of symbols to improve pesticide safety and health education and risk communication. Journal of Immigrant and Minority Health/Center for Minority Public Health, 15, 975–981. Lesch, M.F., Rau, P.L., Zhao, Z., Liu, C., (2009). A cross-cultural comparison of perceived hazard in response to warning components and configurations: US vs. China. Applied Ergonomics, 40, 953–961. Madani, K., Pierce, T. W., Mirchi, A. (2017). Serious games on environmental management. Sustainable Cities and Society, 29, 1–11. Minkler, M., Vasquez, V., Tajik, M., Petersen, D. (2008). Promoting environmental justice through community-based participatory research: The role of community and partnership capacity. Health Education & Behavior : The Official Publication of the Society for Public Health Education, 35, 119–137. Moreno, N., Tharp, B. (1999). An interdisciplinary national program developed at baylor to make science exciting for all k-5 students. Academic Medicine : Journal of the Association of American Medical Colleges, 74, 345–347. Morrone, M. (2001). Primary- and secondary-school environmental health science education and the education crisis: A survey of science teachers in ohio. Journal of Environmental Health, 63, 26–30. Neuhauser, L., Kreps, G. L. (2003). Rethinking communication in the e-health era. Journal of health psychology, 8, 7–23. Nutbeam, D. (2009). Defining and measuring health literacy: What can we learn from literacy studies?. International Journal of Public Health, 54, 303–305. Ramirez-Andreotta, M.D., Brody, J.G., Lothrop, N., Loh, M., Beamer, P.I., Brown, P. (2016). Improving environmental health literacy and justice through environmental exposure results communication. International Journal of Environmental Research and Public Health, 13. Read, C.Y., Ricciardi, C.E., Gruhl, A., Williams, L., Vandiver, K.M. (2016). Building genetic competence through partnerships and interactive models. The Journal of Nursing Education, 55, 300–303. Severtson, D. (2013). The influence of environmental hazard maps on risk beliefs, emotion, and health-related behavioral intentions. Research in Nursing & Health 36, 330–348. Stokes, S., Hood, D., Zokovitch, J., Close, F. (2010). Blueprint for communicating risk and preventing environmental injustice. Journal of Health Care for the Poor and Underserved, 21, 35–52.

Contents

Part I Foundations of Environmental Health Literacy 1 Defining Environmental Health Literacy�� 3 Anna Goodman Hoover 2 Measuring Environmental Health Literacy�� 19 Kathleen M. Gray and Marti Lindsey 3 Communication Research intheEnvironmental Health Sciences�� 45 Kami J. Silk and Daniel Totzkay Part II Raising EHL in the Research Context among Diverse Audiences 4 Engaging withEthnically Diverse Community Groups �� 67 Monica Ramirez-Andreotta 5 Advancing Environmental Health Literacy Through Community-Engaged Research andPopular Education �� 97 Catalina Garzón-Galvis, Michelle Wong, Daniel Madrigal, Luis Olmedo, Melissa Brown, and Paul English 6 Returning Chemical Exposure Results toIndividuals andCommunities �� 135 Julia Green Brody, Phil Brown, and Rachel A. Morello-Frosch 7 Strengthening Environmental Health Literacy Through Precollege STEM andEnvironmental Health Education �� 165 Nancy P. Moreno 8 Health Professionals’ Environmental Health Literacy�� 195 Phil Brown, Stephanie Clark, Emily Zimmerman, Maria Valenti, and Mark D. Miller

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Part III Types of Communication Styles and their Effectiveness at Raising EHL 9 Use ofTraditional andCulturally Appropriate Modalities�� 231 Matthew Dellinger and Jonathan Dellinger 10 The Use ofDigital Communication Channels toEnhance Environmental Health Literacy�� 265 Gary L. Kreps, Kevin Wright, and Amelia Burke-Garcia 11 Using Augusto Boal’s Theatre oftheOppressed inaCommunity-Based Participatory Research Approach toEnvironmental Health Literacy�� 285 John Sullivan 12 Tactile Approaches toHelp Learners Visualize Key Processes inEnvironmental Health Sciences�� 315 Kathleen M. Vandiver Conclusion: Summary andNext Steps�� 333 Index�� 339

Part I

Foundations of Environmental Health Literacy

Chapter 1

Defining Environmental Health Literacy AnnaGoodmanHoover

Abstract Environmental health literacy (EHL) is an emerging area of study that incorporates content and strategies from environmental, health, and social sciences to promote understanding of the ways environmental contaminants affect health. The basic knowledge and skills needed for comprehending environmental health risks and for devising, assessing, implementing and evaluating potential solutions form the foundations of EHL.EHL strives to improve understanding of how individuals and communities make sense of and act on health-related information about environmental hazards. In this chapter, the concept of EHL and its background are introduced, and foundational contributions from health, risk, and participatory communication are discussed. Keywords Environmental health literacy · Health literacy · Health communication · Dissemination · Risk communication · Participatory research · Environmental health sciences · Community engagement · Research translation · Risk perception

Introduction Human beings have long been exposed to substances in the environment that can make them sick, but understanding the relationship between pollutants and human health can be challenging. Many relevant issues beyond the chemistry of a specific contaminant drive what is known about the severity and scale of that contaminant’s potential health impacts. For example, how are people exposed to the substance? Do they inhale it when they breathe? Absorb it through their skin? Drink or eat it? Did the contaminant enter food through the soil in which it grew or the vegetation on which it fed? What kinds of solutions can help reduce the contaminant’s prevalence in the environment? And how can people best protect their health against a substance after they have been exposed? A. G. Hoover (*) Department of Preventive Medicine and Environmental Health, University of Kentucky College of Public Health, Lexington, KY, USA e-mail: [emailprotected] © The Author(s) 2019 S. Finn, L. R. O’Fallon (eds.), Environmental Health Literacy, https://doi.org/10.1007/978-3-319-94108-0_1

A. G. Hoover

These questions are not new, though contaminants of concern and exposure pathways change over time and across settings. From human and animal waste in streets and streams to smoke stacks and chemical spills, societies have learned how to minimize or even prevent some exposures and reduce illnesses related to others using a variety of strategies, including sewage treatment, occupational health and safety planning, and hazardous waste site remediation. New research regularly contributes additional evidence about the best strategies for protecting health in the face of evolving environmental challenges, rendering a grasp of complex environmental health concepts critical as individuals and communities attempt to identify and address concerns. Implicit in many definitions of EHL is recognition that understanding scientific evidence can spur individual and/or collective actions to prevent unnecessary exposures and minimize negative health impacts related to unavoidable exposures. Because individual and community environmental health decisions are rooted within complex historical, political, regulatory, and community contexts, moving from initial levels of EHL to action often requires additional knowledge and skills that extend beyond comprehension of environmental health content to incorporate familiarity with decision-making structures, assessment of the feasibility of potential solutions, recognition of the inherent scientific uncertainties underlying these potential solutions, and identification of relevant local contextual factors that could affect the success of a chosen solution. In other words, EHL competencies also may include broader understanding of roles and responsibilities in environmental health decision processes, the universe of feasible choices, the uncertainties inherent in those choices, and the available strategies for taking action.

Background Both the integrative nature and action orientation of EHL were recognized in an early definition developed by the Society of Public Health Education (2007), which noted that EHL brings together environmental and health concepts to help people “seek out, comprehend, evaluate, and use environmental health information to make informed choices, reduce health risks, improve quality of life and protect the environment.” More recently, Finn and O’Fallon (2017) described EHL as occurring along a continuum that “begins with an understanding of the connection between environmental exposures and human health”; such understandings can better inform how individuals and communities identify and address risk. Although Finn and O’Fallon distinguished between basic levels of understanding and more advanced action-focused EHL, they share with the SOPHE definition explicit recognition of EHL’s multidisciplinarity and implicit recognition of action as a likely outcome. Building on this convergence, environmental health literacy can be defined as an emerging and evolving multidisciplinary field that seeks to better understand how

1 Defining Environmental Health Literacy

individuals and communities make sense of and act on health-related information about environmental hazards. This definition makes clear that EHL requires basic scientific knowledge about contaminants, human health, and exposure pathways; however, such knowledge may not be sufficient for action. Rather, people at more advanced levels of EHL also need to understand the complicated roles, responsibilities, and uncertainties related to environmental health decision and solution implementation processes. The U.S.Superfund regulatory framework provides just one example of the legislative, political, and bureaucratic complexity that underlies environmental health governance and decisions, creating potential challenges for both understanding and action. The Comprehensive Environmental Response, Compensation, and Liability Act of 1980, or CERCLA, established liability of potentially responsible parties– called PRPs– and authorized the U.S.Environmental Protection Agency (US EPA), along with federal, state, and tribal governments, to recover damages caused by hazardous substances. In addition, the original CERCLA legislation established the Agency for Toxic Substances and Disease Registry, or ATSDR, at the Centers for Disease Control and Prevention (CDC). CERCLA was followed sixyears later by the Superfund Amendments and Reauthorization Act of 1986, or SARA, which increased state involvement in Superfund and reinforced the program’s human health focus, establishing the Superfund Research Program – SRP – within the National Institutes of Health’s National Institute of Environmental Health Sciences (NIEHS). Simultaneously, the Emergency Planning and Community Right-to- Know-Act (EPCRA) was signed into law, requiring local and state involvement in emergency planning and establishing the right of public access to information about chemical hazards and risks in communities. As a result, Local Emergency Planning Committees (LEPCs) and Citizen or Stakeholder Advisory Boards (CABs or SABs) began playing important roles in site discussions, alongside state Departments of Environmental Quality (DEQs), state and local health departments (SHDs and LHDs), and other state and local government entities. Together, this interwoven set of regulations, organizations, and relationships has resulted in an acronym-driven shorthand that often appears as unintelligible “alphabet soup”, even to highly educated communities of practice directly concerned with potential exposures from hazardous waste sites (Hu 1994; Theodore and Kiraz 2005). Basic understanding of contaminants and health risks without practical knowledge of how to navigate these existing structures would make taking protective action much more difficult. Therefore, progressing from a basic understanding of environmental health risks to more advanced understanding requires the incorporation of policy knowledge as well. Putting these and many other multidisciplinary pieces together in ways that make content clear and actionable, however, requires integration of social scientific – and particularly communication – theories and strategies into EHL research and practice.

A. G. Hoover

Theoretical Frameworks Although the fields of toxicology, public health, medicine, engineering, geography, and policy all contribute to the scientific and technical knowledge base on environmental exposures and human health, communication provides the theoretical and methodological crucible within which these diverse disciplines combine. From the field of health communication, EHL inherits both health literacy’s focus on information and action, and health communication campaign strategies for changing attitudes and behavior. From risk communication, EHL draws important frameworks for understanding how technical, emotional, historical, and interpersonal factors jointly influence how people make sense of and evaluate messages about hazards. Finally, from participatory communication, EHL derives principles and practices through which scientific and contextual knowledge can be converted to health- protective actions.

Health Communication Improving environmental health requires individual and community capacity to read and understand evidence-based information, as well as “expert” capacity to develop and deploy clear, relevant, and actionable messages about protective strategies. These twin needs require EHL to incorporate foundational theories and constructs from the field of health communication, “the study and use of methods to inform and influence individual and community decisions that enhance health” (Freimuth and Quinn 2004). While the utility of health communication theory and practice will be explored in greater depth in subsequent chapters (e.g., Chap. 3), the process of defining EHL requires some discussion of specific contributions from two key areas: health literacy and theory-driven health communication campaigns.

Health Literacy Health literacy is commonly understood as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan and Parker 2000; IOM 2004). Like its descendant EHL, health literacy is an action-oriented concept that recognizes knowledge should lead to “good health-care decisions” (Benjamin 2010). Also like EHL, health literacy has seen its definition evolve over time, with no fewer than 17 distinct but related definitions emerging within a single decade (Sørensen etal. 2012). Because almost all definitions include explicit or implied focus on the ability to access and understand written and oral information to support health-related decisions, health literacy is strongly connected to health communication research.

1 Defining Environmental Health Literacy

Although it has generated interest since the mid-1970s, health literacy rose in prominence as a tool for improving health and well-being when it was designated as the first objective in the Health Communication and Health Information Technology domain of Healthy People 2020(2017). Because of this placement as a key policy benchmark, it is essential that health literacy be examined within a web of existing hierarchical structures to ensure that its use does not further marginalize the already vulnerable. Consistent associations among low health literacy and age, education, and ethnicity have led to suggestions that health literacy itself be considered among the social determinants of health (Paasche-Orlow etal. 2005; Baur 2010). It is no accident, therefore, that critics have noted that traditional health literacy competencies often are themselves rooted in privilege. Some skills and knowledge needed to be deemed “health literate” rely on high levels of formal education in science, statistics, and information-seeking that simply are not available to everyone (Chinn 2011). Furthermore, communication and information scholars have pointed out that the development of health literacy has been a top-down phenomenon led by academics and government officials– an approach that has left little room for balancing the concerns and lived contexts of the very populations that the field strives to assist (Huber et al. 2012). However, a more recent movement toward critical health literacy has begun recognizing that the social contexts of target audiences must be incorporated into messages and materials (Nutbeam 2008). A related concern for health literacy is its reliance on the presumed neutrality and benevolence of biomedical research (Chinn 2011). Models of health literacy often are situated within a positivistic framework that assumes a “right answer” can be derived from technical or scientific expertise. This approach can miss contextual elements that are vitally important for developing and implementing action. Furthermore, some traditional learning models on which health literacy is based assume that simply knowing about a topic leads to solving topic-related challenges (Colucci-Gray etal. 2006); however, evidence indicates that movement from knowledge to action is mediated by a number of constructs, including attitudes, self- efficacy, communication channels, and perceived message relevance (Bettinghaus 1986; Rimal 2000; Noar etal. 2007; Webb etal. 2010). A key difference between traditional health literacy and EHL lies in their units of analysis. The earliest conceptualizations of health literacy focused primarily on the measurement and attainment of individual skills; recognition of health literacy as a community phenomenon only followed much later (Lurie and Parker 2007; Berkman etal. 2010). In contrast, recognition of the community unit is foundational to EHL, which has at its core a desire to assess and mitigate the threat of exposures on a community level or regional scale. Often such mitigation involves taking protective statutory or regulatory action on contaminants that threaten human health. Thus, entire communities and communities of practice must come to a common understanding in order to act on evidence-based information to prevent exposures and minimize illness related to unavoidable exposures. By foregrounding community contexts, EHL makes room for multiple types of knowledge, recognizing that making “an informed decision” does not necessarily equate to making the decision that scientists, regulatory officials, or other technical

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experts might deem best. In recognizing the community as a unit of EHL action, it is essential to recognize that decisions intended to improve environmental health outcomes sometimes affect economic and socio-cultural dimensions of life. Balancing these concerns in the decision process can escalate complexity to levels that simply do not exist in laboratory settings. In other words, EHL promotes the ability to interpret scientific information not as an end unto itself, but as a means of helping individuals and communities consider technical recommendations and guidelines in balance with their own needs and values. EHL further recognizes that fostering knowledge of socioeconomic, political, and other local contextual drivers among scientists, officials, and other experts is key for building trust among constituencies involved in the decision process (Hoover 2013). In essence, EHL builds on its health literacy foundations by fostering solid scientific ground on which to exchange information about health and hazards, while supporting collaborative decisions that incorporate context into solutions.

Health Communication Campaigns Health literacy pioneer Nutbeam (2000) explicitly recognized the field’s link with health communication, calling health literacy “a composite term to describe a range of outcomes to health education and communication activities.” In fact, health education and promotion theories have long provided critical foundations for the development and dissemination of the evidence-informed messages that are embedded in health communication campaigns. Often focused on individual-level health behavior change, such campaigns strive to educate at-risk people on issues from seat belt safety to the dangers of illegal drug use, with a goal of catalyzing protective behaviors. Using health promotion models and constructs, health communication campaigns have helped build health literacy on targeted issues by both increasing knowledge and promoting action. Early models, such as the Health Belief Model (HBM), deployed health-related information primarily to change perceptions of an individual’s susceptibility to a poor health outcome, the severity of that outcome, the benefits of taking protective action, and the barriers to taking that action (Rosenstock 1974). However, it soon became apparent that additional constructs were needed to strengthen the outcomes of such informational campaigns. Health communicators and their health promotion partners subsequently developed new models to account for additional drivers of action. Efficacy is one critical construct found across many health communication models. Popularized through Bandura’s (1977) Social Learning and Cognitive Theory, self-efficacy, or “the conviction that one can successfully execute the behavior required to produce the [desired] outcomes,” began appearing in various forms across both new and existing health promotion and communication models (Rosenstock et al. 1988). A very similar construct, perceived behavioral control,

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was added to the Theory of Reasoned Action to produce the Theory of Planned Behavior (Fishbein 1979; Ajzen 1991). Models that incorporate self-efficacy posit that people will act on health-related information only when they are confident that they have the ability to take the desired action. For example, people who believe they do not have time to prepare healthful meals will be less likely to undertake weight loss programs designed around cooking new recipes. Therefore, addressing beliefs about self-efficacy, particularly among vulnerable populations who might face significant barriers to action, is an important step in crafting messages that promote protective action. On the other hand, people may feel confident that they can take a particular action but are not confident that the action itself will achieve the touted outcome. For example, people may feel that they have the time to cook new recipes but that these meals will not actually help them lose weight– a belief that also reduces the likelihood of their undertaking the weight loss program. In her Extended Parallel Process Model, or EPPM, Witte (1992) addressed this challenge by incorporating yet another efficacy construct, response efficacy. Response efficacy, in short, is the belief that taking a specific action will lead to the desirable outcome. EPPM considers response efficacy an important mediator for how people respond to fear-inducing messages. Considered in the EHL context, a person living near a hazardous waste site might have adequate time and resources to attend a U.S.EPA-hosted community meeting but also might feel that attending the meeting will change nothing, thereby rendering that person less likely to participate. However, if the person has sufficient knowledge of the structures and mechanisms of environmental regulation and if promotional materials for the meeting include very specific messages about how attendance can help prioritize local concerns, response efficacy– and consequently the individual’s likelihood of participating– could be increased. Communication campaigns use the models and constructs described above– and others like them– to generate and disseminate awareness-raising messages to large audiences in hopes of spurring specific outcomes (Rogers and Storey 1987). In recent years, dissemination and implementation science– or D&I– researchers and their practice partners increasingly have deployed lessons learned from health communication campaigns to help shrink the research-to-practice and research-to-policy gaps. As scientists strive to ensure the adoption of evidence-informed policies and practices to improve health, they increasingly borrow and adapt audience-specific health communication strategies to ensure carefully crafted messages are delivered by trusted sources through the most appropriate channels (Brownson etal. 2018). By doing so, D&I scientists hope to optimize the real-world impact of emerging knowledge for very distinct audiences. Today, EHL is similarly positioned to draw on the cumulative lessons of decades of campaign-related implementation and evaluation. Meta-analyses of health communication campaigns, for example, provide vital information. Some underscore the prevalence of small campaign effect sizes (Snyder etal. 2004). Others illustrate that messages strong in both fear appeals and efficacy are more likely to generate behavior change (Witte and Allen 2000). Still others recognize the importance of

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audience targeting for achieving campaign goals (Noar 2006). As EHL grows and matures, it will be important for researchers and practitioners to learn from such findings.

Risk Communication Developing strategies for advancing EHL also requires some understanding of risk communication history and practice. Risk communication coalesced as a field in the 1970s and 80s, primarily in response to a series of crises, including revelations about the excessive exposures along Love Canal, the Bhopal chemical disaster, and the Three Mile Island and Chernobyl nuclear accidents. With each event, government officials, scientists, and industry leaders became increasingly aware of the need to inform at-risk communities about existing and emerging environmental and health risks (Perrow 1984; Weick 1988; NRC 1989; Heath and O’Hair, 2010). The earliest iterations of risk communication thus were driven by a “deficit model” that implied disagreements about risk were driven by lack of scientific or technical knowledge among lay audiences rather than potential differences in priorities and/or values across stakeholder groups (Horlick-Jones and Farre 2010). However, the mere provision of information was not very successful in changing either attitudes or behaviors. The unidirectional approach had fallen victim to what Sellnow and Sellnow (2010) call “the general tenet of communication studies”: information does not equate to understanding. The National Research Council (1989) subsequently called for risk communication approaches to include “democratic dialogue,” to be “interactive,” and to incorporate stakeholder “concerns, opinions, or reaction to risk messages.” Responding to– and in some cases anticipating– these needs, risk communicators in government offices, private industry, and academia have worked to develop, test, implement, evaluate, and refine best practices for the field. In many ways, the best practices approach began with US EPA’s Seven Cardinal Rules of Risk Communication (Covello and Allen 1994). The Cardinal Rules and later approaches, such as CDC’s Crisis and Emergency Risk Communication and the Best Practices for Crisis Communication, draw from the premise that people understand risk as a function of both technical hazard and community outrage (Sandman 1993; Covello and Sandman 2001; Reynolds and Seeger 2005; Seeger 2006). In this view, information based in technical hazard– that is, the likelihood of a harmful event occurring and the severity of the consequences– privileges scientific expertise; in contrast, the at-risk parties experience outrage that draws from their lived experiences, fears, and concerns. Messages that address technical issues but ignore emotional issues and motivations to act will not be effective. As Sandman (1993) puts it, “[a]s long as the outrage goes unmanaged, the public is unlikely to notice that the hazard is well-managed.” While early risk communicators assumed that the mere act of sharing information was a positive step, subsequent risk communication theory and practice make

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clear that how people make sense of risks is central to how they respond to hazard- related messages. To draw from Weick (1988), the act of communicating can facilitate mutual understanding, but communicative action also can have detrimental effects that play out over time(Hoover 2017). This is the enactment perspective, which describes an ongoing, iterative process through which people both shape and are constrained by their environments. These constraints subsequently influence how people make sense of information. The enactment perspective explicitly recognizes three potential mediators that affect sensemaking processes. Commitment to a particular position can cause the formation of “blind spots” and the “tenacious justification” of that position in the face of contrary evidence; capacity limits enactment through the hom*ogeneity of perspectives among potential sensemakers; and expectations can lead to assumptions that become “self-fulfilling prophecies” (Weick 1988). In the often emotionally charged push-pull of risk communication, delays in information sharing or contradictory messages can lead to additional confusion among stakeholders about what to believe and whom to trust, further exacerbating challenges for collaborative action (Sellnow etal. 2009). EHL researchers and practitioners must recognize that diverse stakeholders often have competing perspectives about contaminants and health. These people might have received conflicting or erroneous information, and they almost certainly have differing baseline levels of technical knowledge and emotional investment in environmental health issues. In other words, EHL cannot be divorced from the broader cultural and sociopolitical landscape. Rather, risk communication’s sensemaking framework recognizes that an individual’s understanding is formulated through dialogue with others. By extension, it is possible that individuals with higher EHL levels can, through dialogue with other stakeholders, positively affect the ability of the whole to collectively understand, diagnose, and solve environmental health problems. As Chinn (2011) notes, such collective action relies on “critical health literacy competencies [that] include knowledge of the local community and organizations, [and] skills in working in groups.” These vital competencies can be supported by leveraging strategies from participatory communication.

Participatory Communication In recent years, risk communication has seen a marked turn from its unidirectional, information-driven beginnings to a partnership development approach (Fischhoff 1995). This evolution has been driven in part by critical pedagogy that recognizes students as co-creators of knowledge (Freire 1996; Colucci-Gray et al. 2006), as well as by advances in community-based participatory research (CBPR) and community-engaged research (CEnR) methods. As these influences have been brought to bear on both risk communication and environmental health, approaches have become more focused on equity and representation.

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For two decades, federal agencies, scientists and others have recognized the need to incorporate communities and communities of practice as partners in the development and conduct of research (Israel etal. 1998; Israel etal. 2001; O’Fallon and Dearry 2002; Winterbauer etal. 2016). These participatory and engaged paradigms have arisen in reaction to the traditional extractive research model in which data is gathered and analyzed solely by outsiders, such as urban university researchers conducting research in rural communities without sharing subsequent findings with that community. In addition to supporting inclusion of local knowledge in studies themselves, participatory strategies also have become vital for the translation of research findings into action. Wallerstein and Duran (2010) in particular have argued that incorporating indigenous knowledge and culture into complex systems-level approaches can help bridge jargon-driven communicative disconnects and promote trust – both of which are common challenges for communicating environmental health research findings. With the development of participatory communication methods, the communication discipline has been a leader in this important area. With its foundations in action research, participatory communication builds on an iterative social scientific approach that includes both researchers and participant-subjects (Lewin 1946), recognizing that stakeholders’ local knowledge has inherent value for solving health- related challenges. Thus, participatory communication focuses on horizontal information exchange and mutual learning that can build dialogue and trust among often disparate stakeholders. Participatory communication endeavors encourage multi-directional communication– deploying visualizations, interviews, and group work to facilitate dialogue and collaborative decision-making among all stakeholders (Anyaegbunam et al. 2010). By involving community partners, participatory communication encourages the development, implementation, and evaluation of culturally-appropriate decisions and policies, assisting participants in developing mutual understandings that can help reduce conflict (Ting-Toomey and Oetzel 2002; Anyaegbunam etal. 2004). Because participatory communication directly addresses the social construction of risk, its approaches can build EHL capacity and support action that is situated within a particular social context. With its unit of analysis often set at the community level, EHL requires such collaborative activities to help communities define, identify, and solve health problems through action (Beeker etal. 1998). In short, the integration of participatory communication into EHL fulfills the field’s promise of promoting culturally appropriate, multidirectional information-sharing that is more likely to move knowledge into action.

Methods As an emerging field that draws its theoretical underpinnings from many disciplines, EHL also integrates both quantitative and qualitative methods from these disciplines. For example, health literacy’s focus on knowledge and skill attainment

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requires the development and validation of surveys and questionnaires to assess competencies (Altin etal. 2014); such instruments also are essential for assessing EHL.In contrast, health communication campaigns strive to change behaviors in target audiences, which requires extensive formative research, including audience segmentation and analysis, identification of optimal communication channels, and development of appropriate message content (Snyder 2007); all of these activities are key for increasing EHL. Building on this health communication groundwork and complementing it with additional approaches from the marketing field, dissemination and implementation science researchers have created frameworks and tools for audience-to-channel matching, as well as evaluative tools to help determine the reach and effectiveness of their efforts (Becker 2015; Neta etal. 2015; Brownson etal. 2018). Risk communication research uses a variety of methodological tools, including case studies examining the social construction of risk, media studies that evaluate the interplay of mass communication and risk perceptions, and mental models that support message development (McComas 2006); because the ways in which people make sense of risk affects their subsequent interpretation of environmental health information, each of these tools has utility for EHL.Finally, participatory communication approaches that privilege context and promote collaborative decisions are vital for achieving EHL’s potential of promoting action that can improve health.

Research/Engagement Examples Many foundational efforts for the emerging EHL field have arisen through efforts to translate environmental health research findings and engage communities to solve problems. At times, these activities have deployed social scientific tools to ensure the cultural relevance of research (Hoover et al. 2015; Ramirez-Andreotta et al. 2014, 2015), thereby encouraging the exchange of both technical and contextual information. For example, efforts to incorporate indigenous knowledge into data collection (Rocketal. 2007) builds participants’ knowledge of technical processes while also raising scientists’ awareness of cultural context. In some cases, researchers have worked to build capacity for understanding and acting on technical information to solve very specific local problems, such as determining acceptable and unacceptable future uses of a hazardous waste site (KRCEE 2011). In other cases, researchers have documented the importance of community trust for the interpretation and actionability of scientific evidence (Scammell etal. 2009). Some studies have even focused on identifying visualizations and other communication tools that can promote understanding of hazards and potential health impacts (Cleary etal. 2017). Whether formally acknowledged as EHL or not, all of these activities have contributed immensely to the field’s development.

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Future Directions As EHL continues to evolve, both research and practice will benefit from its formal recognition as a cohesive, multidisciplinary field. Ongoing efforts to capture and characterize EHL, such as those described in this book, will support future classification of various approaches, consolidation of research findings across sectors and domains, and translation of these findings to communities, practice, and policy. The continuous engagement of new communities, contexts, and investigators with diverse expertise will help elucidate the relationship between EHL and the social determinants of health. Importantly, in helping individuals and communities improve understanding and make informed decisions, EHL must strive to recognize the value of even basic levels of understanding as well as avoid stigmatizing communities and individuals who do not yet have the resources, formal education, or lived experience to interpret and/or act on technical information as readily as others. Further, EHL must ensure that environmental health scientists, practitioners, and other “technical experts” also are seeking and gaining knowledge about the contexts in which lay audiences are interpreting and acting on their messages. Understanding local priorities and values will not only generate better messages delivered through more relevant channels, but also will enable exposure-reducing, health-promoting actions that are feasible, collaborative, sustainable and resonate with affected populations.

Conclusion As an emerging field, EHL will continue to see its definition evolve and become refined in coming years. New evidence about how individuals and communities make sense of the relationship between environmental hazards and human health will contribute vital information for this evolution, as will improved approaches for incorporating community contexts into health protective recommendations and evidence-informed action. Inevitably these new understandings will arise from studies that build on the theoretical and methodological foundations discussed in this chapter. Lessons from health literacy can help EHL researchers create tools to identify and assess critical skills and competencies. Health communication and dissemination science approaches can help guide formative work to develop and target EHL information for key audiences. Risk communication can help EHL practitioners incorporate more holistic understandings of sensemaking into their capacity- building processes. Finally, participatory communication strategies can help minimize further marginalization of vulnerable populations, creating a multidirectional, horizontal EHL framework. In the often chaotic world of competing risk perceptions and values, assessing and improving EHL can unite practitioners, researchers, advocates, industries, and communities to raise understanding and promote actions that minimize exposures and mitigate exposure-related health threats.

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References Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior and Human Decision Processes, 50(2), 179–211. Altin, S.V., Finke, I., Kautz-Freimuth, S., & Stock, S. (2014). The evolution of health literacy assessment tools: A systematic review. BMC Public Health, 14(1), 1207. Anyaegbunam, C., Mefalopulos, P., & Moetsabi, T. (2004). Participatory rural communication appraisal: A handbook for rural development practitioners (2nd ed.). Rome: UN FAO. Anyaegbunam, C., Hoover, A. G., & Schwartz, M. (2010). Use of community-based participatory communication to identify community values at a Superfund site. Providence: American Society of Civil Engineers Annual Meeting. Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review, 84, 191–215. Baur, C. (2010). New directions in research on public health and health literacy. Journal of Health Communication, 15(S2), 42–50. Becker, S.J. (2015). Direct-to-consumer marketing: A complementary approach to traditional dissemination and implementation efforts for mental health and substance abuse interventions. Clinical Psychology: Science and Practice, 22(1), 85–100. Beeker, C., Guenther-Grey, C., & Raj, A. (1998). Community empowerment paradigm drift and the primary prevention of HIV/AIDS. Social Science & Medicine, 46(7), 831–842. Benjamin, R.M. (2010). Improving health by improving health literacy. Public Health Reports, 125(6), 784. Berkman, N.D., Davis, T.C., & McCormack, L. (2010). Health literacy: What is it? Journal of Health Communication, 15(S2), 9–19. Bettinghaus, E. P. (1986). Health promotion and the knowledge-attitude-behavior continuum. Preventive Medicine, 15(5), 475–491. Brownson, R.C., Eyler, A.A., Harris, J.K., Moore, J.B., & Tabak, R.G. (2018). Getting the word out: New approaches for disseminating public health science. Journal of Public Health Management and Practice, 24(2), 102–111. Chinn, D. (2011). Critical health literacy: A review and critical analysis. Social Science & Medicine, 73(1), 60–67. Cleary, E.G., Patton, A.P., Wu, H.C., Xie, A., Stubblefield, J., Mass, W., Grinstein, G., Koch- Weser, S., Brugge, D., & Wong, C. (2017). Making air pollution visible: A tool for promoting environmental health literacy. JMIR Public Health and Surveillance, 3(2), e16. Colucci-Gray, L., Camino, E., Barbiero, G., & Gray, D. (2006). From scientific literacy to sustainability literacy: An ecological framework for education. Science Education, 90(2), 227–252. Covello, V.T., & Allen, F.W. (1994). Seven cardinal rules of risk communication. Washington, D.C: US Environmental Protection Agency. Covello, V., & Sandman, P.M. (2001). Risk communication: Evolution and revolution. In Solutions to an environment in peril (pp.164–178). Finn, S., & O’Fallon, L. (2017). The emergence of environmental health literacy—From its roots to its future potential. Environmental Health Perspectives, 125(4), 495–501. https://doi. org/10.1289/ehp.1409337. Fischhoff, B. (1995). Risk perception and communication unplugged: Twenty years of process. Risk Analysis, 15(2), 137–145. Fishbein, M. (1979). A theory of reasoned action: Some applications and implications. In Nebraska symposium on motivation (Vol. 27, pp.65–116). Freimuth, V.S., & Quinn, S.C. (2004). The contributions of health communication to eliminating health disparities. American Journal of Public Health, 94(12), 2053–2055. Freire, P. (1996). Pedagogy of the oppressed (Rev ed.). NewYork: Continuum. Healthy People 2020 [Internet]. Washington, DC: U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion [cited 17 July

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2017]. Available from: https://www.healthypeople.gov/2020/topics-objectives/topic/ health-communication-and-health-information-technology Heath, R.L., & O’Hair, H.D. (2010). The significance of risk and crisis communication. In R.L. Heath & H. D. O’Hair (Eds.), The handbook of risk and crisis communication. New York: Routledge. Hoover, A.G. (2013). Communication at superfund sites and the reification of division: Toward a convergence-building model of risk communication. University of Kentucky. Hoover, A.G. (2017). Sensemaking, stakeholder discord, and long-term risk communication at a US superfund site. Reviews on Environmental Health, 32(1–2), 165–169. Hoover, E., Renauld, M., Edelstein, M.R., & Brown, P. (2015). Social science collaboration with environmental health. Environmental Health Perspectives, 123(11), 1100–1106. Horlick-Jones, T., & Farre, J.(2010). On the communicative constitution of risk objects in mediated times. Catalan Journal of Communication & Cultural Studies, 2(2), 131–143. Hu, H. (1994). Decision-making in human health impact assessments: A clinician’s perspective. Environmental Impact Assessment Review, 14(5–6), 439–450. Huber, J.T., Shapiro, R.M., & Gillaspy, M.L. (2012). Top down versus bottom up: The social construction of the health literacy movement. The Library Quarterly, 82(4), 429–451. Institute of Medicine. (2004). In D.A. Kindig, A.M. Panzer, & L.Nielsen-Bohlman (Eds.), Health literacy: a prescription to end confusion. Washington, DC: National Academies Press. Israel, B.A., Schulz, A.J., Parker, E.A., & Becker, A.B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19(1), 173–202. Israel, B.A., Schulz, A.J., Parker, E.A., & Becker, A.B. (2001). Community-based participatory research: Policy recommendations for promoting a partnership approach in health research. Education for Health (Abingdon, England), 14(2), 182–197. Kentucky Research Consortium for Energy and the Environment., 2011. Community visions for the Paducah Gaseous Diffusion Plant site (No. UK/KRCEE doc#: 27.1 2011). Kentucky Research Consortium for Energy and Environment, University of Kentucky, Lexington, KY. Lewin, K. (1946). Action research and minority problems. Journal of Social Issues, 2, 34–46. Lurie, N., & Parker, R. (2007). Moving health literacy from the individual to the community. American Journal of Health Behavior, 31(1), S6–S7. McComas, K.A. (2006). Defining moments in risk communication research: 1996–2005. Journal of Health Communication, 11(1), 75–91. National Research Council. (1989). Improving risk communication. Washington, DC: National Academies Press. Neta, G., Glasgow, R.E., Carpenter, C.R., Grimshaw, J.M., Rabin, B.A., Fernandez, M.E., & Brownson, R.C. (2015). A framework for enhancing the value of research for dissemination and implementation. American Journal of Public Health, 105(1), 49–57. Noar, S.M. (2006). A 10-year retrospective of research in health mass media campaigns: Where do we go from here? Journal of Health Communication, 11(1), 21–42. Noar, S.M., Benac, C.N., & Harris, M.S. (2007). Does tailoring matter? Meta-analytic review of tailored print health behavior change interventions. Psychological Bulletin, 133(4), 673–693. Nutbeam, D. (2000). Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15(3), 259–267. Nutbeam, D. (2008). The evolving concept of health literacy. Social Science & Medicine, 67(12), 2072–2078. O’Fallon, L.R., & Dearry, A. (2002). Community-based participatory research as a tool to advance environmental health sciences. Environmental Health Perspectives, 110(Suppl 2), 155–159. Paasche-Orlow, M.K., Parker, R.M., Gazmararian, J.A., Nielsen-Bohlman, L.T., & Rudd, R.R. (2005). The prevalence of limited health literacy. Journal of General Internal Medicine, 20(2), 175–184. Perrow, C. (1984). Normal accidents. NewYork: Basic Books.

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Ramirez-Andreotta, M.D., Brusseau, M.L., Artiola, J.F., Maier, R.M., & Gandolfi, A.J. (2014). Environmental research translation: Enhancing interactions with communities at contaminated sites. Science of the Total Environment, 497, 651–664. Ramirez-Andreotta, M.D., Brusseau, M.L., Artiola, J., Maier, R.M., & Gandolfi, A.J. (2015). Building a co-created citizen science program with gardeners neighboring a superfund site: The Gardenroots case study. International Public Health Journal, 7(1). Ratzan, S.C. and Parker, R.M., (2000). Introduction. In: National library of medicine current bibliographies in medicine: Health literacy. NLM Pub. No. CBM 2000-1. Selden CR, Zorn M, Ratzan SC, Parker RM, Eds. Bethesda, MD: National Institutes of Health/ U.S.Department of Health and Human Services. Reynolds, B. and W.Seeger, M., (2005). Crisis and emergency risk communication as an integrative model. Journal of Health Communication, 10(1), pp.43–55. Rimal, R.N. (2000). Closing the knowledge-behavior gap in health promotion: The mediating role of self-efficacy. Health Communication, 12(3), 219–237. Rock, T., Brugge, D., Slagowski, N., Manning, T., & Lewis, J.(2007). Lessons from the Navajo: Assistance with environmental data collection ensures cultural humility and data relevance. Progress in Community Health Partnerships: Research, Education, and Action, 1(4), 321. Rogers, E.M., & Storey, J.D. (1987). Communication campaigns. In C.R. Berger & S.H. Chaffee (Eds.), Handbook of communication science (pp.817–846). Beverly Hills: Sage. Rosenstock, I. M. (1974). Historical origins of the health belief model. Health Education Monographs, 2, 328–335. Rosenstock, I.M., Strecher, V.J., & Becker, M.H. (1988). Social learning theory and the health belief model. Health Education Quarterly, 15(2), 175–183. Sandman, P.M. (1993). Responding to community outrage: Strategies for effective risk communication. Fairfax: American Industrial Hygiene Association. Scammell, M.K., Senier, L., Darrah-Okike, J., Brown, P., & Santos, S. (2009). Tangible evidence, trust and power: Public perceptions of community environmental health studies. Social Science & Medicine, 68(1), 143–153. Seeger, M.W. (2006). Best practices in crisis communication: An expert panel process. Journal of Applied Communication Research, 34(3), 232–244. Sellnow, T.L., & Sellnow, D. (2010). The instructional dynamic of risk and crisis communication: Distinguishing instructional messages from dialogue. The Review of Communication, 10(2), 112–126. Sellnow, T.L., Ulmer, R.R., Seeger, M.W., & Littlefield, R.S. (2009). Effective risk communication: A message-centered approach. NewYork: Springer Science+Business Media, LLC. Snyder, L.B. (2007). Health communication campaigns and their impact on behavior. Journal of Nutrition Education and Behavior, 39(2), S32–S40. Snyder, L. B., Hamilton, M. A., Mitchell, E. W., Kiwanuka-Tondo, J., Fleming-Milici, F., & Proctor, D. (2004). A meta-analysis of the effect of mediated health communication campaigns on behavior change in the United States. Journal of Health Communication, 9(S1), 71–96. Society of Public Health Education. (2007). National health education planning guide. Washington, DC: SOPHE Available at: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.179.3181 &rep=rep1&type=pdf. Sørensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., & Brand, H. (2012). Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health, 12(1), 80. Theodore, L., & Kiraz, R. G. (2005). A review of nanotechnology. Nanotechnology Law & Business, 305. Ting-Toomey, S., & Oetzel, J. G. (2002). Cross-cultural face concerns and conflict styles. Handbook of International and Intercultural Communication, 2, 143–164. Wallerstein, N., & Duran, B. (2010). Community-based participatory research contributions to intervention research: The intersection of science and practice to improve health equity. American Journal of Public Health, 100(S1), S40–S46.

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Webb, T. L., Joseph, J., Yardley, L., & Michie, S. (2010). Using the internet to promote health behavior change: A systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy. Journal of Medical Internet Research, (1), 12. Weick, K.E. (1988). Enacted sensemaking in crisis situations. Journal of Management Studies, 25(4), 305–317. Winterbauer, N. L., Bekemeier, B., VanRaemdonck, L., & Hoover, A. G. (2016). Applying community-based participatory research partnership principles to public health practice-based research networks. SAGE Open, 6(4). Witte, K. (1992). Putting the fear back into fear appeals: The extended parallel process model. Communications Monographs, 59(4), 329–349. Witte, K., & Allen, M. (2000). A meta-analysis of fear appeals: Implications for effective public health campaigns. Health Education & Behavior, 27(5), 591–561.

Chapter 2

Measuring Environmental Health Literacy KathleenM.Gray andMartiLindsey

Abstract Environmental health literacy (EHL) is an emerging framework that defines the knowledge and skills that prepare people to make health-protective decisions using available environmental data (Finn S, O’Fallon L. Environ Health Perspect 125(4):495–501 (2017)). According to the Society for Public Health Education (Society for Public Health Education. What is environmental health literacy? Retrieved from: http://www.sophe.org/environmentalhealth/key_ehl.asp (2014)), application of knowledge and skills is essential to achieving EHL, as evidenced in its definition of EHL as “the wide range of skills and competencies that people need in order to seek out, comprehend, evaluate, and use environmental health information to make informed choices, reduce health risks, improve quality of life and protect the environment.” Early research on EHL has focused on how people understand connections between environmental exposures and health and, to a more limited extent, on the ways that improving literacy can lead to policies or infrastructure developments that reduce environmental exposures (Gray KM.Int J Environ Res Public Health 15(3):466 (2018)). The perspectives that inform this chapter include adult literacy, sociocultural theory, and the principles of community-based participatory research (CBPR). Understanding the elements of EHL and how they might be measured is bolstered by familiarity with a range of literacies, including science literacy, health / public health literacy, and environmental literacy; and the range or continuum of skills mastery embodied in EHL parallels the widely accepted representation of adult literacy (National Center for Education Statistics. What is NAAL? In: National Assessment of Adult Literacy (NAAL). A nationally representative and continuing assessment of English language literary skills of American Adults. Retrieved from http://nces.ed.gov/naal/ (2003)). Additionally, the lens of sociocultural theory and constructivism, which has been applied nationally and internationally in educational research and practice (Amineh RJ, Asl HD.J Soc Sci, Lit Lang 1(1):9–16

K. M. Gray (*) · M. Lindsey UNC Chapel Hill Institute for the Environment, Chapel Hill, NC, USA e-mail: [emailprotected] © The Author(s) 2019 S. Finn, L. R. O’Fallon (eds.), Environmental Health Literacy, https://doi.org/10.1007/978-3-319-94108-0_2

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(2015); Jacobson SK, McDuff MD, Monroe MC.Conservation education and outreach techniques. Oxford University Press, Oxford (2015); Liu CH, Matthews R.Intl Edu J 6(3):386–399 (2005)), provides a context for understanding the development of EHL. Its emphasis on learning through social interaction with more skilled instructors, who can be peers, and the influence of cultural context in learning, underscores the importance of culturally relevant instruction and materials and non-standard forms of assessment. Further, CBPR promotes active community involvement in the design and conduct of research and educational interventions; and its principles are grounded in commitment to active collaboration and participation from all partners at every stage of research (O’Fallon L, Dearry A. Environ Health Perspect 110:155–159 (2002)). Taken together, these perspectives suggest that EHL goes beyond understanding a specific environmental exposure to a broader understanding of the varied ways that the environment affects human health in community contexts. This chapter begins with a description of five, critical literacies– adult, science, health, public health, and environmental– and approaches to measuring them, all of which inform the conception and measurement of EHL as discussed in this chapter. Research relevant to measuring EHL is described, including a section on culturally relevant measurement. The chapter concludes with implications for EHL measurement approaches going forward. Keywords Environmental health literacy · Measurement · Assessment · Skills · Knowledge · Health literacy · Adult literacy · Environmental literacy · Community-based

Conceptualization andMeasurement ofLiteracy Levels Adult Literacy Literacy is broadly understood to mean that a person can make and communicate meaning from and use a variety of symbols, such as words, letters, and numbers (UNESCO 2002). The literacy movement in the United States arose after World War II, when it became national policy to raise basic literacy in order to increase national security and global competitiveness (Brandt 2004). Yet even 70years later, the problem of low literacy is common in the United States (DeWalt etal. 2004), as shown by the following national literacy assessment efforts: National Adult Literacy Survey (1993), the National Assessment of Adult Literacy (2005), and the Program for the International Assessment of Adult Competencies (2016). Measuring Adult Literacy In 1992, the National Center for Education Statistics (NCES) surveyed a nationally representative sample of nearly 13,600 adults in the United States, age 16 and older, using the National Adult Literacy Survey (NALS) (Kirsch etal. 1993). The NALS established a mechanism for assessing three types of adult literacy: (a) prose literacy – the knowledge and skills needed to search,

2 Measuring Environmental Health Literacy Literacy scale and year Prose

Document

Quantitative

1992

2003

1992

2003

28 29

12*

53*

2003

22*

Below Basic

15 13*

1992

70 60 50 40 30 20 10 0 Percent Below Basic

30 33*

15 13*

13 13

10 20 30 40 50 60 70 80 90 100 Percent Basic and above

Basic

Intermediate

Proficient

Fig. 2.1 Percent of U.S.Adults in Each Literacy Level: 1992 & 2003. Source: NCES, 2003

comprehend, and use continuous texts (such as editorials, news stories, and instructional materials), (b) document literacy– knowledge and skills needed to search, comprehend, and use non-continuous texts (such as job applications, payroll forms, transportation schedules, and drug/food labels), and (c) quantitative literacy – knowledge and skills required to identify and perform computations, either alone or sequentially, using numbers embedded in printed materials (such as balancing a checkbook, figuring out a tip, and completing an order form). In 2003, NCES conducted a second survey, the National Assessment of Adult Literacy, or NAAL, with over 19,000 adults in the United States (National Center for Education Statistics 2003). This analysis led to the use of four skills-based performance levels to represent an individual’s ability to deal with increasing complexity, as follows: • • • •

Below Basic: no more than the most simple and concrete literacy skills Basic: can perform simple and everyday literacy activities Intermediate: can perform moderately challenging literacy activities Proficient: can perform complex and challenging literacy activities

In comparison to 1992, the 2003 NAAL showed little progress towards the national goal of eliminating illiteracy (Fig. 2.1, below). Yet in highlighting the importance of adult literacy for policy and programs, the NAAL represented an early attempt to define and understand the nature and implications of health literacy, specifically low health literacy. This assessment documented that almost 50 percent of Americans (or 89 million adults) experienced difficulty with health information and navigating the health system (Kutner etal. 2006). These findings informed the development of the concept of health literacy, which is discussed later in this chapter.

K. M. Gray and M. Lindsey

In the third large study of adult literacy, the Program for the International Assessment of Adult Competencies (PIAAC)(NCES 2016), adults (ages 16–65) in 35 countries were surveyed between 2012 and 2014. When compared to the international average distribution of literacy skills, a larger percentage of U.S. adults performed at both the top and bottom of the distribution. Thirteen percent of U.S. adults performed at the highest proficiency level (4/5) on the PIAAC, compared to 12 percent of the international participants. Eighteen percent of U.S. adults performed at the lowest level of the PIAAC literacy scale (at or below Level 1), versus the international average of 16 percent. The Organization for Economic Cooperation and Development (OECD) plans to build on these assessments to further define literacy and numeracy, incorporate problem-solving to emphasize skills used in technology-rich environments, and improve understanding of the reading skills of individuals with low levels of literacy.

Science Literacy Following national efforts to measure adult literacy, science literacy became a goal of primary and secondary science education as early as the 1980s (Snow and Dibner 2016). Science for All Americans (AAAS 1990) defined a science-literate person as someone who: …is aware that science, mathematics and technology are interdependent human enterprises with strengths and limitations; understands key concepts and principles of science; is familiar with the natural world and recognizes both its diversity and unity; and uses scientific knowledge and scientific ways of thinking for individual and social purposes. (Introduction, para. 19)

This framework is widely recognized as a first step towards setting national standards in science for all students and a major influence on science education reform efforts. Miller (1998) refined this definition of science literacy to focus on three dimensions: (1) an understanding of key scientific terms and concepts that would enable a reader to make sense of popular press coverage, (2) an understanding of the process or nature of scientific inquiry; and (3) some level of understanding of the impact of science and technology on society. Measuring Science Literacy Despite identifying three dimensions, Miller (1998) asserted that scientific literacy was best conceptualized as a two-dimensional measure, including a vocabulary dimension associated with basic scientific constructs and a process or inquiry dimension. According to Laugksch (2000), there has been continued debate about Miller’s third dimension, which emphasizes a problem- solving approach in science teaching and a focus on science-technology-society issues, particularly because the sociocultural context varies substantially when measured across nations. In the decades since, researchers have used large-scale samples, standardized questions, and survey techniques to describe and compare

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trends associated with gains in science content knowledge, attitudes toward science, and support for science among the public. A majority of this research has focused on science literacy at the individual rather than societal level (Snow and Dibner 2016).

Health Literacy andPublic Health Literacy Health literacy is defined as the “degree to which individuals have the capacity to obtain, process, and understand basic information and services needed to make appropriate decisions regarding their health” (Ratzan and Parker 2000 as cited in IOM 2004, Executive Summary, p. 2). As described above, the National Assessment of Adult Literacy (NAAL) was part of early efforts to define health literacy (NCES 2003; Nutbeam 2000). Specifically, the NAAL identified relationships between health literacy and variables such as educational attainment, age, race/ethnicity, sources of information about health issues, and health insurance coverage. It defined health literacy to include prose, document, and quantitative literacy and suggested that health information should be tailored to the capacities of target audiences. Initially, health literacy focused on strengthening patient–provider relationships, specifically improving communication between the two so that individuals and families could make better health decisions and better adhere to medical regimens (Nutbeam 2008). The Institute of Medicine (IOM) definition focused on individuals, because research had shown that people with low health literacy had difficulty understanding health information, received less preventive care and paid more for care (IOM 2004; Nutbeam 2008). Recent discussions about health literacy have highlighted the importance of moving beyond an individual focus and considering health literacy as an interaction between the skills of individuals (and their families/ caregivers) and the demands of health systems. Public Health Literacy Freedman etal. (2009) asserted that the traditional framing of health literacy, with its focus on individual capacity and competency, resulted in lower literacy levels being associated with individual deficiencies rather than socio-cultural dynamics. Thus, efforts to improve literacy focused on improving interpersonal communication and facilitating information exchange between patients and providers. The limitations of this approach led to the conceptualization of public health literacy (PHL) as “the degree to which individuals and groups can obtain, process, understand, evaluate, and act upon information needed to make public health decisions that benefit the community” (Freedman etal. 2009, p.448). This concept differs from health literacy in several ways. First, PHL emphasizes the ability to evaluate the quality of information and includes action, which assumes that individuals and groups have the power to accomplish public health goals through civic engagement. Further, although individual skills related to accessing, interpreting, and using health information contribute to PHL; they do not ensure

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societal-level outcomes. Finally, PHL recognizes that individuals exist in environmental and social contexts rather than viewing them only as part of a patient- provider dyad. Measuring Health Literacy Low health literacy has been described by the IOM as limited health knowledge, health behaviors, and health outcomes (IOM 2004). Even a person with adequate reading comprehension skills may not be able to understand printed health materials, especially if they lack the preparation to understand the technical information contained in those materials (Baker 2006). In the United States, low health literacy is a pervasive and an under recognized problem (Williams etal. 2002). As noted above, the 2003 NAAL estimated that more than 89 million American adults had limited health literacy skills (Kutner etal. 2006). Specifically, using the performance levels mentioned above, NAAL reported that a majority of adults (53%) had Intermediate health literacy; and roughly one-third had Basic (22%) or Below Basic (14%) health literacy, meaning they were likely to have difficulties with healthrelated documents. Just 11% had a health literacy level of Proficient. Problems with health literacy included trouble with basic reading and numerical skills (Safeer and Keenan 2005). Additionally, Plimpton and Root (1994) identified a gap between the reading level of most adults, approximately eighth grade, and that of most health care materials, most often above the tenth grade. In other words, lower individual literacy levels often correlate with limited health literacy. At least 112 health literacy instruments measuring a range of skills have been developed, but few have been rigorously validated, nor do they cover the full range of dimensions of health literacy (Snow and Dibner 2016). Further, comprehensive, direct measurement of health literacy is impractical in most clinical settings and in scoping most health education projects (Pleasant and McKinney 2011). However, in a research setting, an individual’s general and health reading fluency and vocabulary can be measured using established tools, such as the Newest Vital Sign (NVS), Test of Functional Health Literacy in Adults (TOFHLA), and the Rapid Estimate of Adult Literacy in Medicine (REALM). Each of these has been validated and used in research and clinical settings, and all three are discussed briefly below. Thus, for specific topics, health knowledge can be measured as can the complexity, reading level and difficulty of written materials. In each case, the purpose of the screening tool is to identify patients who might have difficulty reading or understanding health information. The NVS (Weiss etal. 2005) was developed as a quick screening test for limited literacy in primary health care settings. It measures reading comprehension and numeracy skills using a nutrition label accompanied by six questions. Fewer than four correct responses indicate the possibility of limited literacy. This tool has been shown to be effective with research participants and clinical patients (Rowlands etal. 2013), particularly in identifying limited health literacy in younger adult populations and with older Spanish- and English-speaking patients (Ramirez-Zohfeld etal. 2015). The TOFHLA and a shorter version (S-TOFHLA) are timed reading comprehension tests in which words in a passage are omitted and replaced with blank spaces (Parker etal. 1995). Patients must select a word for each blank space from

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four multiple-choice options. These tests have been shown to be valid, reliable indicators of patient ability to read health-related materials, with results indicating that a high proportion of patients cannot perform basic reading tasks (Parker 2000; Baker etal. 1999). Finally, the REALM, which was developed and validated in the early 1990s, continues to be used in health literacy assessment (Haun etal. 2014). It was designed to assist health care professionals in identifying patients with low literacy levels so that simplified medical instructions and patient education materials could be provided to meet patient needs (Murphy etal. 1993). The REALM tests recognition of medical terms, and a shorter form (REALM-SF) enables quicker assessment (Arozullah et al. 2007). With the REALM-SF, patients read the following words aloud to a healthcare provider: behavior, exercise, menopause, rectal, antibiotics, anemia, and jaundice. If the patient does not recognize a word or takes longer than 5 seconds to read it, the word is marked as unread. Scores are accompanied by recommendations for appropriate types of health education materials. Dumenci etal. (2013) have questioned the value of REALM scores, asserting that the ability of a person to read and pronounce health-related terms does not adequately represent health literacy. They suggest that the ability to read and pronounce printed health- related terms should be viewed as a predictor of low health literacy rather than as a being synonymous with health literacy.

Environmental Literacy Whereas public health literacy considers decision-making and broad community contexts, environmental literacy identifies knowledge and skills and presupposes that knowledge leads to action, both individual and collective. Specifically, the North American Association for Environmental Education (NAAEE) defines an environmentally literate person as: …someone who, both individually and together with others, makes informed decisions concerning the environment; is willing to act on these decisions to improve the well-being of other individuals, societies, and the global environment; and participates in civic life. (North American Association for Environmental Education (NAAEE) 2011)

The full definition describes cognitive, affective, and behavioral components of environmental literacy, noting that these components are both interactive and developmental. Further, NAAEE recognizes that environmental literacy develops along a continuum over time. This definition is consistent with ideas first outlined in the Tbilisi Declaration (United Nations Environment Programme 1977), which defined the objectives of environmental education as awareness, knowledge, attitudes, skills and participation. Connecting Environmental Literacy to Environmental Health Education Chepesiuk (2007) highlighted environmental literacy as a useful framework for environmental health education, given its emphasis on critical thinking skills

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Table 2.1 Skills and actions embodied in literacies that inform EHL Health literacy

Public health literacy Environmental literacy

Skills Obtain, process and understand information/services needed to make individual health decisions

Action/application Strengthen patient-provider communication Improve individual health decisions Make public health decisions that Obtain, process and understand benefit the community, as well as information/services needed to make self individual and group health decisions Identify and analyze environmental issues Make informed decisions about the environment Evaluate potential solutions Improve the well-being of other individuals, societies & global environment Propose and justify actions to address the Participate in civic life issues

and developing active citizens who could apply their knowledge to specific issues. He underscored the wide range of skills needed to understand, assess and use environmental health information, especially when behavior change was a goal. Chepesiuk also pointed to a gulf between health literacy and environmental literacy, noting that, at that time, health literacy initiatives typically did not address the environment. Measuring Environmental Literacy Several approaches have been used to measure environmental literacy, often in school settings. Working with 2004 6th and 8th grade students in 48 counties in the United States, McBeth and Volk (2010) developed the Middle School Environmental Literacy Survey (MSELS). They found moderate to high levels of ecological understanding and moderately positive attitudes associated with willingness to take action supporting the environment; however, students did not report actual behaviors to address environmental conditions. Additionally, results showed that most students were lacking critical thinking and decision-making skills that would be useful in resolving environmental problems. The MSELS also was used to compare the environmental literacy of 739 6th and 8th grade students in schools with school-wide environmental education (EE) programs against students in schools without such programs (Stevenson etal. 2013). Results showed improved environmental literacy when published EE curricula were combined with time outdoors. As these examples indicate, although adult literacy and science literacy are foundational for EHL, health/public health literacy and environmental literacy may more directly inform current conceptions of EHL.Table2.1 represents the skills and action-oriented or applied contexts of the latter literacies, which suggest framing for EHL and aspects that could be measured.

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nowledge andSkills That Constitute Environmental Health K Literacy Drawing on some of the approaches described above, Valdez etal. (2014) explored the core competencies needed to be considered environmental health literate. For this research, EHL competency was defined as having the necessary ability, knowledge and skills to use environmental health information successfully for one’s self or one’s community (SOPHE 2014). The purpose of this research was to: (a) describe common themes regarding the skills and knowledge required to identify, understand, and take action regarding environmental exposures, and (b) to refine these themes through a survey distributed to NIEHS grantees nationwide. This effort was viewed as foundational to understanding varied levels of EHL and developing a continuum of knowledge and skills to explore in subsequent research. Valdez et al. used a mixed-methods approach, including 28 semi-structured interviews of environmental health professionals in two states (Arizona and New York) and a quantitative survey of 181 environmental health professionals across the United States. The interviews were analyzed with a grounded theory approach, which then informed development of the survey questions. The survey was disseminated online to professionals in academia, government agencies, K-12 settings, and others who shared environmental health information with various public and school audiences. Participants included environmental health educators (41%), researchers (40.5%), and others (18.5%). Through the interviews, a total of 69 knowledge items and 37 skills were identified. Interestingly, participants were better able to describe and agree on what a person needed to know to be considered environmental health literate than they were able to describe what person needed to be able to do. Twelve of the knowledge items were considered essential by at least 70% of survey respondents, while just six skill items were identified as being essential by more than 50% of survey respondents. Table 2.2 presents the top six knowledge items and skills identified by survey respondents. These results suggest that there is a knowledge base, or a set of knowledge items agreed upon by a majority of respondents, deemed essential for EHL.At the same time, lower agreement on the importance of specific skills may indicate a higher value placed on knowledge over skills by all participants, or it may mean that the participants do not conceive of EHL as always including skills. It may also indicate limitations in approach, such as not eliciting sufficient skill items during the interviews. Results also indicated that while EHL encompassed several pre-defined types of literacy, it also included some items unique to EHL.According to participants, the focus of EHL was largely on foreseeing the probability that certain health outcomes may follow various environmental exposures. EHL went beyond understanding how to navigate the health care system, comprehending the essentials of illnesses, or proper care and treatment of existing health conditions and extended to how environmental or social conditions could be changed to reduce exposures. These preliminary results warrant further study.

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Table 2.2 Essential knowledge and skills for EHL Knowledge Understanding that environmental exposures influence health Understanding that environmental agents can enter the body through three primary routes: ingestion, inhalation and dermal absorption Understanding the harmful impacts of specific environmental agents

Skills Ability to determine whether an information source was reliable Ability to identify well-known or established hazards in one’s environment

Ability to find information about hazards in one’s microenvironment, such as at home or in the workplace Understanding that environmental agents can be Ability to find information about regional/ reduced but not always avoided community environmental hazards/issues Ability to find information about how to Awareness that reliable information about environmental exposures can be provided through reduce environmental health risks in one’s life research Awareness that research on how environmental Ability to convey one’s concerns about exposures influence health takes a long time environmental health risks to others

These findings suggest an opportunity to further explore the skills needed to use environmental health information. A more complete assessment of such skills could inform approaches to evaluating attainment of EHL.Additionally, the identification of essential knowledge and skills sets the stage for development of a continuum of measures of EHL, which also could provide insight into the consequences of low EHL.

Measuring Environmental Health Literacy To date, no protocol exists for measuring EHL, although at least one survey instrument is under development (Ratnapradipa et al. 2015). However, as described below, several studies have represented EHL, by describing individual and community-level outcomes and by reporting the level of environmental health knowledge and awareness of participants. A few studies have even characterized the self-efficacy of participants with respect to certain teaching skills (Butterfield etal. 2011; LePrevost etal. 2014). Gray (2018) reviewed studies that described changes in EHL and found that EHL was measured or represented in the following ways: • As individual understanding of a connection between environmental exposures and health outcomes • As a score on a survey of environmental health knowledge or increased content knowledge using pre/post-tests • As individual choices to change behaviors in response to environmental exposures • As participation in report-back studies • As community changes in response to environmental exposures

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Gray asserted that these examples demonstrate the continuum of EHL that connects understanding of how environmental exposures influence health with individual and community action to reduce exposures. Further, she called for explicit incorporation of elements of self-efficacy and skills that enable health-protective decisions into the conceptualization of EHL.Below we provide examples of these studies, organized by their focus on either individual level EHL, both individual and community-level EHL or community level EHL.

Individual Level EHL Understanding the Connection between Environmental Exposures and Health A starting point for representing EHL is demonstrating that people are making connections between environmental exposures and their health. Chan etal. (2015) investigated 72 college women’s use of personal care products and their views on potential health effects from exposures during the preconception period to endocrine disrupting chemicals in these products. In this study, participants reported lack of awareness of the potential health effects of environmental toxicants in these products. In another study, 894 women were surveyed about their attitudes toward environmental chemicals in food and personal care products (Barrett etal. 2014). Researchers found that college-educated women were more likely to believe that environmental chemicals were dangerous, and these beliefs were associated with subsequent healthy behavior choices. Other studies have represented participant identification of potential health risks from environmental exposures as a form of EHL.For example, White etal. (2014) found that residents of a public housing complex (N=42) defined environmental health risk factors broadly, including risks from pollutants as well as physical safety concerns from crime and law enforcement interactions. Schure etal. (2013) explored perceptions of health with 27 members of the Confederated Tribes of the Umatilla Indian Reservation. In this study, participants identified a range of environmental health concerns, underscoring the importance of local contexts to environmental health literacy. Participant concerns included: poor air quality from industrial sources, smoking and mold; water pollution from hazardous waste sites and cattle ranching; and toxic chemical exposure from a nuclear facility, pesticides and methamphetamine labs. Measuring EHL with Surveys A team of researchers has been developing tools to measure EHL with a goal of using these tools to define an EHL baseline. Ratnapradipa etal. (2015) developed an EHL survey in 2009 and recently tested it with 32 participants in four states. Results indicated that participant perceptions of environmental health were based on misinformation or lack of information, which could lead to poor environmental health decision making. With an earlier version of this instrument, Ratnapradipa etal. (2011a) surveyed 395 undergraduate students in introductory health education courses at a Midwestern university in the United States.

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Results indicated a general lack of knowledge of environmental health concepts, which corresponded to a lack of protective behaviors when faced with environmental risks. In yet another earlier version, Ratnapradipa et al. (2011b) assessed the EHL of 101 pre-service teachers at a Midwestern university and found deficiencies in basic environmental health knowledge and a statistically significant correlation between knowledge scores and environmental health-related behavior scores. Another instrument, the Environmental Health Engagement Profile, was used to assess how 433 people experienced environmental health hazards and their associated risks as well as individual and collective responses to those risks (Dixon etal. 2009). Findings suggested that personal actions were more likely than community- level actions in response to environmental health concerns. Measuring Post-Intervention Gains in Content Knowledge Other studies have focused on documenting gains in environmental health knowledge following specific interventions as a means of demonstrating EHL.Ramos etal. (2012) surveyed residents of 498 households along the Texas-Mexico border about their knowledge of environmental health and disease, following an educational intervention led by community health workers. The authors reported gains in content knowledge related to pesticide exposures, water exposures and smoking-related diseases. These gains included knowledge of behaviors that could reduce exposure to environmental contaminants. In another study, researchers assessed farmworker knowledge of pesticide safety messages following an hour-long lesson conducted by trained educators (LePrevost etal. 2014). Participants (N=20) demonstrated significant increases in knowledge of pesticide safety messages between pre- and post-assessments. Similarly, Gray and Graves (2016) (Fig.2.2) described the results of a 6-hour training focused on identifying and reducing exposure to environmental health hazards in homes, conducted with over 300 public health professionals. Following the training, pre-/posttests showed increased knowledge of environmental health hazards, and a subset of participants reported actively working with clients and patients to implement exposure-reduction strategies modeled in the training, related to asthma triggers, mold and pests. Changing Behavior in Response to Environmental Exposures Several studies illustrate the importance of formal and informal educators as facilitators of behavior changes that could represent EHL.For instance, in a study addressing contaminated well water in Bangladesh, elementary school teachers were trained in an arsenic education curriculum as part of a school-based intervention that encouraged residents to switch to low-arsenic wells (Khan etal. 2015). The intervention included an in-depth training for teachers, weekly 15-minute educational sessions, bimonthly fieldwork, and an annual competition among schools. Parental engagement also was emphasized. In this case-control study, 773 children from 14 schools participated in pre-/ post-surveys about well safety and groundwater knowledge along with well water testing. Findings showed that families of children who received the intervention were five times more likely to switch from high- to low-arsenic wells. In the northeastern United States, Paul etal. (2015) designed an intervention to address barriers to well water testing, and the program boosted well testing rates. In a similar Canadian study

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Fig 2.2 Public health professionals participating in healthy homes training

of well testing behaviors, researchers demonstrated that education alone was not sufficient to ensure that well owners tested their wells annually (Imgrund etal. 2011). The authors reported that improving access to public health departments (which were responsible for testing) was more effective than education alone. Korfmacher and Kuholski (2008) demonstrated the impact of asking study participants to commit to actions, in writing, following an intervention. The authors were part of a community-based effort to address high levels of lead poisoning in their local community. This effort included a physical Healthy Home, in which members of a community-based organization led tours through the house, using low-literacy materials and hands-on displays to show how to reduce environmental health hazards in homes. At the end of the tour, visitors could elect to complete a form describing one or more actions they intended to take to reduce hazards in their own homes. Sixmonth phone and email follow-up (with over 100 respondents) revealed that almost all reported having completed or partially completed the actions they had identified. The Role of Community Health Workers The effectiveness and value of skilled instructors who are based in communities underscores the relevance of sociocultural theory to EHL measurement. Butterfield et al. (2011) assessed the impact of a home-based intervention on reducing exposures to several environmental health hazards in 235 homes in two northwestern states. Public health nurses led the intervention, which included the collection of environmental samples and biological samples from children in the home, followed by in-home education tailored according to each participant’s sample results and presented via an interactive book that highlighted findings in each room of the home. The researchers assessed the impact on parents’ cognitive and behavioral outcomes – specifically, their sense of self- efficacy and their adoption of risk-reducing behaviors. Results showed significant improvements on measures of self-efficacy and precaution adoption among the intervention groups.

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More recently, Mankikar etal. (2016) evaluated the effectiveness of a home- based environmental health intervention conducted in an urban center in a northeastern state. Working with 150 low-income families, researchers analyzed the influence of the intervention on residents’ knowledge of environmental health hazards, medical visits for children with asthma, and the presence of home health hazards. The intervention consisted of two home visits (led by a community health worker) that included a home assessment, environmental education, and distribution of supplies. Results suggested that the home-based intervention increased participants’ knowledge of hazards. Additionally, the presence of home hazards was reduced over the course of the study,and fewer asthma-related medical visits were reported.

Spanning Individual andCommunity-Level EHL Report-back protocols that increasingly are being incorporated into biomonitoring studies, in which biological samples are collected in response to an environmental exposure, also have resulted in improvements in EHL.Such studies have demonstrated how study participants use new knowledge to inform action, both at the individual level and collectively. For instance, Ramirez-Andreotta et al. (2016) interviewed parents of children who had participated in a toxic metals exposure study to determine whether they understood study results and how they applied them in their lives. The authors reported that participants understood their children’s data and used it to ask new questions. Participants also took action to reduce their family’s health risks, using the personal exposure data to inform their choices, which led the authors to assert that the study advanced participants’ EHL. Madrigal et al. (2016) reported increased EHL among youth participants in a 3-year study of young Latinas’ exposure to endocrine disrupting compounds (EDCs) in personal care products. In addition to involving the youth in measuring their own exposure, researchers engaged them in developing educational messages for other youth, publicizing the study findings, and developing advocacy activities. Participants’ EHL, along with leadership skills, career orientation and self-esteem, were assessed using written reflections, end-of-event questionnaires, interviews, and observation. The researchers used Bloom’s Taxonomy to evaluate participants’ progression to higher levels of critical thinking, such as occurs when a person goes from being able to identify EDCs in products to being able to share information about EDCs with peers. At the same time, they echoed questions raised by Finn and O’Fallon (2017) about the limits of Bloom’s framework when behavior change is a goal of education.

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Community-Level EHL Another approach to documenting EHL has been to show evidence of community change in response to knowledge gains. In a community-based participatory research (CBPR) study with members of the Apsaalooke Tribe, researchers tested 97 wells for uranium and other contaminants and conducted household water use surveys (Eggers et al. 2015). Following tests, well owners received personalized results, a spreadsheet comparing their test results with EPA standards, and an in- person follow-up visit. Results were disseminated through varied activities, ranging from community meetings and displays at local health fairs and health departments to newspaper articles and school presentations. In response to reporting high levels of contaminants in well water and requests from study participants, the tribal water and wastewater authority raised funds for and installed an automated dispensing system in the main Reservation town, which enabled rural residents to purchase filtered municipal water at low cost. In another CBPR study focused on well water, residents using community wells for drinking water contacted researchers with concerns about contamination of these wells with perfluorooctanoic acid (PFOA) from a local industry. Researchers tested the levels of PFOA in residents’ blood and found PFOA levels to be ~80 times higher than in the general population (Emmett et al. 2009). Together they explained the results to the broader community and developed response strategies. Outcomes included provision of free bottled water to residents until the local water utility could upgrade its filtrationsystem. Citizen science also is an emerging approach for EHL efforts, as demonstrated by Ramirez-Andreotta et al. (2015) (see Chapter 4). In this study, residents of a southwestern community with arsenic contamination learned the skills needed for them to assess uptake of arsenic in garden vegetables and be able to characterize the potential risk from gardening and consuming vegetables from their home gardens. Researchers evaluated individual learning, programmatic outcomes and community- level outcomes. As with the report-back/biomonitoring studies described above, these motivated citizen scientists sought an understanding of the scientific results and implemented behavioral changes to reduce their arsenic exposure as a result of this understanding. Similar to other citizen science efforts, these participants became more involved in resource-related issues, including addressing contamination in the local public water supply. In summary, biomonitoring and environmental monitoring studies that have incorporated report-back protocols have resulted in increased understanding of environmental exposures among individuals, behavior changes, and community- wide impacts. Many of these studies applied CBPR principles, underscoring connections between EHL and community engagement.

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Addressing Cultural Context inMeasurement ofEHL Cultural competency was emphasized in the design and implementation of several of the educational interventions described above (Eggers etal. 2015; Ramos etal. 2012), suggesting that culturally sensitive programming more effectively positions communities to address health disparities. As early as 2001, researchers identified the importance of cultural context in fostering EHL.Zarcadoolas etal. (2001) presented a case study of a partnership to produce a community guide to brownfields that included literacy experts, environmental scientists and residents of inner-city communities with brownfields. The authors anticipated modern challenges to EHL, as they described how the combination of declining literacy, increasing cultural diversity, and the complexity of the environmental health sciences made environmental health information inaccessible to the public. Focusing on the use of oral and written language and graphical representations, they facilitated understanding of technical information and the subsequent use of such information to protect health. They termed their process “cooperative composing” (p.19) and argued that pairing community-produced knowledge with expert knowledge enabled residents to better engage in policy processes. Like the CBPR studies described above, this study was grounded in: commitment to active collaboration and participation from all partners at every stage of research, fostering co-learning, disseminating results in useful terms, and ensuring the cultural competency of the intervention.

romotion ofEnvironmental Health Literacy inTribal P Communities A similar convergence of cultural diversity, complexity of environmental health issues and low literacy can be found in many American Indian communities in the United States (NCES 2015). As noted above, a range of environmental health issues have been identified as relevant in American Indian communities, including poor air quality, water pollution, and toxic chemical exposures, among others (Schure etal. 2013). At the same time, students in tribal schools are significantly more likely to live in poverty and attend rural schools, and they are less likely to have parents who graduated college or have a computer at home (Sparks 2017). Additionally, only 11 percent of American Indians have earned bachelor’s degrees compared to 27 percent of the total population in the United States (National Education Association 2017). Despite this lower educational attainment, tribal community members often possess intergenerational knowledge about environmental conditions in their communities, which represents a tribal form of EHL. For over a decade, Lindsey (2017a, b) and colleagues have worked in tribal communities in Arizona, engaging adults and youth in understanding how the environment affects human health. To address underlying issues with low literacy, they adopted universal precautions, such as scaffolding educational materials, or

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Fig. 2.3 Community members participating in asthma information walk

p roviding materials at progressively more complex levels, to take lower literacy levels into account (Baker 2006). For instance, the Information Walk (Fig.2.3) incorporates interactive activities for all ages as well as simple evaluation. Distinct Information Walks have been co-created with six tribes in Arizona, working closely with the tribal cultural departments to tailor them with appropriate language and images. An Information Walk is comprised of multiple stations, with displays and one-on-one activities, similar to a mobile museum exhibit. These stations, which typically are staffed by university personnel and community volunteers, promote face-to-face interactions in a nonthreatening environment and prompt individuals to ask questions; in-depth information is available for those who request it. A simple evaluation tool is used to assess participant learning, identifying the top three things the person learned and questions they still have. Recently, Lindsey’s team has used similar tools in concert with science cafés in American Indian communities. Cards and pens are placed on the tables to encourage participants to write down questions if they are reluctant about asking them aloud. For cultural groups where listening is a sign of respect and there are varying degrees of comfort with asking questions, this approach enables more active participation. This work led to the conclusion that assessment of EHL should be done in culturally appropriate ways, including use of verbal rather than written assessment. Other examples of environmental health education projects developed in partnership with tribal communities have resulted in outcomes that could be interpreted as changes to individual and community EHL.For example, DeWeese etal. (2009) developed and assessed the efficacy of an educational intervention designed to increase awareness of fish consumption advisories in tribal communities in three Midwestern states. They relied on formative research (e.g., risk calculations tailored to tribal consumption patterns and focus groups with tribal members) to develop

K. M. Gray and M. Lindsey

maps that enabled decisions about reducing mercury exposure while preserving tribal customs. Pre- and post-intervention survey data from fish harvesters and women of childbearing age showed significant increases in awareness and concern about mercury contamination and changes to harvesting and food preparation behaviors to reduce mercury exposure. The authors concluded that community participation in fish consumption advisory development improved advisory acceptance by incorporating critical cultural attitudes and beliefs. In a similar vein, McOliver et al. (2015) described a tribally-designed maternal biomonitoring program for organohalogens and heavy metals that was implemented alongside sampling of marine fish and sea mammals. When biomonitoring results showed an association between mercury in participants’ blood and coastal residence, an educational intervention was designed to raise awareness among subsistence fishermen that younger, smaller sea mammals had lower levels of contaminants, and land mammals had very low levels. Initial results showed maternal blood levels of contaminants decreasing as awareness of contaminants in food sources increased, suggesting that the intervention was effective. These examples underscore the importance of cultural competency and active community engagement in EHL initiatives.

Implications forFuture Measurement ofEHL Over time, the concept of literacy as applied to scientific disciplines has evolved. Early models focused primarily on whether individuals understood specific concepts and processes and how they might encounter these concepts in daily lives (AAAS 1990). Then the idea of literacy in the scientific realm grew to incorporate skills and abilities and, in some cases, application to decision making and community contexts (Freedman etal. 2009; North American Association for Environmental Education (NAAEE) 2011). The literacy conversation also began to include sociocultural dimensions, recognizing that individuals acting alone may not be able to influence community-scale and policy issues (Snow and Dibner 2016). This shift is evident in the emerging representations of EHL as a continuum of knowledge, skills and practice (Finn and O’Fallon 2017; Gray 2018; Hoover 2014; Marsili 2016). With reference to specific measurement tools, a variety of tools have been developed to assess science, health/public health, and environmental literacy (McBeth and Volk 2010; Pleasant and McKinney 2011; Snow and Dibner 2016). Many of the science and health literacy tools have focused primarily on content knowledge (Snow and Dibner 2016). Yet the results of studies referenced in this chapter have shown that content knowledge does not necessarily correspond with behavior (Ratnapradipa etal. 2011a, b), raising questions about why content knowledge has been deemed a sufficiently robust measure. An additional concern is that achievement on content knowledge measures may reflect prior schooling as much as immediate learning. As Falk (2002) argued, science literacy tests that mimic school-based testing may be misleading, because those who scored well “were likely to be those who had completed the most school courses in science” (p.64). Further, many m easurement tools

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target literacy at the individual level, meaning they may miss community-scale outcomes. Given a definition of EHL that explicitly incorporates community-scale dimensions, content-focused measurement tools alone do not seem sufficient. Initial work on EHL measurement tools has not yet grappled with the potential need to assess content mastery and skills development. For instance, Ratnapradipa etal. (2015) found that such instruments may need to be issue-specific, to be understandable to lay audiences, and simplified, given the number of content areas spanned by the environmental health sciences. At the same time, when environmental health concepts are reduced to a brief set of questions, detail and complexity are lost, which may limit one’s ability to apply that knowledge in meaningful ways and may limit researchers’ ability to measure how such knowledge is applied. Given the need for behavior change, both at individual and community levels, to reduce or eliminate some environmental exposures, tools to measure EHL should include an assessment of skills and actions (or intent to act) associated with content knowledge measures. As Valdez etal. (2014) noted a working knowledge of environmental health sciences is critical for people to be able to generalize from one environmental exposure to others. Further, the ability to accurately interpret science-related knowledge is an important dimension of EHL and should inform an individual’s ability to locate and use new information to understand the impact of additional exposures (Kolstø 2001). The characterization of adult literacy by performance level (i.e., assigning a value from Below Basic to Proficient based on acquisition of certain skills; NAAL, 2003) offers a potential model for assessing skills development associated with EHL.Using the core knowledge and skills identified by Valdez etal. (2014) and presented in Table 2.2, assessments could incorporate content knowledge about environmental health science, broadly defined, and could be implemented in concert with a skills assessment tailored to the essential skills. Additionally, assessment of content knowledge could be tailored for specific exposures, such as toxic metals in well water or fish, and to be responsive to cultural norms. Related to skills mastery, measurement of EHL also may need to include some assessment of self-efficacy for health-protective behaviors, especially where behavior change is an identified outcome. As Bandura (1998) noted in his conception of social cognitive theory, individuals choose a specific behavior when they believe in their ability to perform that behavior (self-efficacy) and expect it to produce desired outcomes (outcome expectancy). Lacking information about these important variables may obscure opportunities to increase EHL that are not related to content knowledge or existing skills. Defining EHL comprehensively provides several entry points to measuring EHL, and we recommend that any definition include the following: (a) knowledge of the health effects of a specific environmental exposure underpinned by broader understanding of environmental health science concepts, (b) the ability to seek out and use information, and (c) positive perceptions of self-efficacy related to health- promoting behaviors. This multi-faceted approach also recognizes that EHL is neither a linear progression nor comprehensive knowledge about environmental factors, but rather depends on the specific exposure, individual and community health, and cultural context, among other factors.

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Future Research Opportunities The research described within this chapter demonstrates a continuum of EHL in which knowledge of environmental exposures and their influences on health is mediated by self-efficacy for health-protective behaviors and skills related to information seeking and processing. Taken together, these elements of EHL can lead to individual and community action to reduce harmful environmental exposures. However, because this scholarship is in an early stage, further research is needed to understand how people move along the EHL continuum. What intrinsic interests or motivation first stimulate awareness and pursuit of environmental health knowledge? How does self-efficacy for specific behaviors promote or inhibit additional learning and action? Many research opportunities lie in the answers to these questions, and they could inform not only the design of educational interventions but also the measurement of their effectiveness and of EHL itself. Given the body of research on self-efficacy and its influence on actions taken in response to information, adaptation of self-efficacy measures used in science education, especially in informal science settings, also could enhance our understanding of EHL. Future research also could provide insights into the baseline environmental health literacy of target populations, in the context of specific environmental exposures, as well as the influence of community engagement efforts or educational interventions on literacy levels. But to establish a baseline or measure the ways in which an intervention fosters EHL, measurement tools and approaches will be needed. Toward that end, development and validation of multi-faceted tools to formally assess baseline EHL and changes against baseline seems likely. Any such instruments should be responsive to the challenges described above. Several existing literacy measures seem well positioned to be adapted for EHL in research settings. A process-focused approach, similar to Newest Vital Sign, could be developed using an artifact that incorporates environmental health information (such as a household cleaner label). Associated questions could then shed light on the ability of a participant to interpret the available information. This approach combines knowledge and skills, making it more robust than a knowledge-only assessment. Similarly, a case study approach could present a scenario in which participants draw conclusions using environmental health knowledge and other skills. Either of these approaches would ensure EHL would not be reduced to a single number or series of quantitative values, thus presenting a fuller picture of where an individual may be on the EHL continuum and providing greater insight into how to move forward. As a starting point, future research could revisit the essential knowledge items and skills identified by Valdez etal. (2014) with a goal of refining and building on those items and identifying the combination of knowledge and skills that would constitute varying literacy levels. Similar to the NAAL (NCES 2003), these measures could be used to represent Below Basic, Basic, Intermediate and Proficient literacy levels. Such characterizations could provide environmental public health practitioners and researchers with a better understanding of the abilities of the people they serve, ideally leading to more effective communication about reducing harmful environmental exposures.

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Finally, application of the environmental health literacy framework to a range of environmental health issues and impacted populations is needed to understand how the dimensions of EHL interact and what factors ultimately influence lower versus higher levels of literacy. Such research could assist in developing educational interventions to improve environmental health literacy. It also could illuminate the individual and societal implications of a range of literacy levels, which may have actionable implications for environmental health education practices and could inform health-protective decisions.

References American Association for the Advancement of Science (AAAS). (1990). Science for all Americans. New York: Oxford University Retrieved from http://www.project2061.org/publications/sfaa/ online/sfaatoc.htm. Amineh, R.J., & Asl, H.D. (2015). Review of constructivism and social constructivism. Journal of Social Sciences, Literature and Languages, 1(1), 9–16. Arozullah, A.M., Yarnold, P.R., & Bennett, C.L. (2007). Development and validation of a short- form, rapid estimate of adult literacy in medicine. Medical Care, 45(11), 1026–1033 PMID: 18049342. Baker, D.W., Williams, M.V., Parker, R.M., Gazmararian, J.A., & Nurss, J.(1999). Development of a brief test to measure functional health literacy. Patient Education and Counseling, 38(1), 33–42. Baker, D.W. (2006). The meaning and the measure of health literacy. Journal of General Internal Medicine, 21(8), 878–883. Bandura, A. (1998). Health promotion from the perspective of social cognitive theory. Psychology and Health, 13, 623–649. Barrett, E. S., Sathyanarayana, S., Janssen, S., Redmon, J. B., Nguyen, R. H., Kobrosly, R., & Swan, S.H. (2014). Environmental health attitudes and behaviors: Findings from a large pregnancy cohort study. European Journal of Obstetrics & Gynecology and Reproductive Biology, 176, 119–125. Brandt, D. (2004). Drafting US literacy. College English, 66(5), 485–502. Butterfield, P.G., Hill, W., Postma, J., Butterfield, P.W., & Odom-Maryon, T. (2011). Effectiveness of a household environmental health intervention delivered by rural public health nurses. American Journal of Public Health, 101(supplement 1), S262–S270. Chan, L.M., Chalupka, S.M., & Barrett, R. (2015). Female college student awareness of exposures to environmental toxins in personal care products and their effect on preconception health. Workplace Health & Safety, 63(2), 64–70. Chepesiuk, R. (2007). Environmental literacy: Knowledge for a healthier public. Environmental Health Perspectives, 115(10), A494–A499. DeWeese, A.D., Kmiecik, N.E., Chiriboga, E.D., & Foran, J.A. (2009). Efficacy of risk-based, culturally sensitive Ogaa (walleye) consumption advice for Anishinaabe tribal members in the great lakes region. Risk Analysis, 29(5), 729–742. DeWalt, D.A., Berkman, N.D., Sheridan, S., Lohr, K.N., & Pignone, M.P. (2004). Literacy and health outcomes. Journal of General Internal Medicine, 19(12), 1228–1239. Dixon, J.K., Hendrickson, K.C., Ercolano, E., Quackenbush, R., & Dickson, J.P. (2009). The environmental health engagement profile: What people think and do about environmental health. Public Health Nursing, 26(5), 460–473.

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Dumenci, L., Matsuyama, R.K., Kuhn, L., Perera, R.A., & Siminoff, L.A. (2013). On the validity of the rapid estimate of adult literacy in medicine (REALM) scale as a measure of health literacy. Communication Methods and Measures, 7(2), 134–143. Eggers, M.J., Moore-Nall, A.L., Doyle, J.T., Lefthand, M.J., Young, S.L., Bends, A.L., etal. (2015). Potential health risks from uranium in home well water: An investigation by the Apsaalooke (Crow) Tribal Research Group. Geosciences, 5(1), 67–94. Emmett, E. A., Zhang, H., Shofer, F. S., Rodway, N., Desai, C., Freeman, D., & Hufford, M. (2009). Development and successful application of a “Community-First” communication model for community-based environmental health research. Journal of Occupational and Environmental Medicine, 5(12), 146–156. Falk, J.H. (2002). The contribution of free-choice learning to public understanding of science. Interciencia, 27(2), 62–65. Finn, S., & O’Fallon, L. (2017). The emergence of environmental health literacy—From its roots to is future potential. Environmental Health Perspectives, 125(4), 495–501. Freedman, D.A., Bess, K.D., Tucker, H.A., Boyd, D.L., Tuchman, A.M., & Wallston, K.A. (2009). Public health literacy defined. American Journal of Preventive Medicine, 36(5), 446–451. Gray, K.M. (2018). From content knowledge to community change: A review of representations of environmental health literacy. International Journal of Environmental Research and Public Health, 15(3), 466. Gray, K., & Graves, N. (Producers). (2016). Leveraging partnerships to advance lead and healthy homes programming in North Carolina [webinar]. Retrieved from https://www.niehs.nih.gov/ research/supported/translational/peph/webinars/healthy_homes/ Haun, J.N., Valerio, M.A., McCormack, L.A., Sørensen, K., & Paasche-Orlow, M.K. (2014). Health literacy measurement: An inventory and descriptive summary of 51 instruments. Journal of Health Communication, 19(sup2), 302–333. Hoover, A.G. (2014). Connecting disciplines to inform and develop the emerging field of environmental health literacy. [Webinar]. Retrieved from: https://www.niehs.nih.gov/research/ supported/assets/docs/a_c/connecting_disciplines_to_inform_and_develop_the_emerging_ field_of_environmental_health_literacy_508.pdf Imgrund, K., Kreutzwiser, R., & de Loe, R. (2011). Influences on the water testing behaviors of private well owners. Journal of Water and Health, 9(2), 241–252. Institute of Medicine. (2004). Health literacy: A prescription to end confusion. Washington, DC: The National Academies. Jacobson, S.K., McDuff, M.D., & Monroe, M.C. (2015). Conservation education and outreach techniques. Oxford: Oxford University Press. Khan, K., Ahmed, E., Factor-Litvak, P., Liu, X., Siddique, A.B., Wasserman, G.A., etal. (2015). Evaluation of an elementary school-based educational intervention for reducing arsenic exposure in Bangladesh. Environmental Health Perspectives, 123(12), 1331–1336. Kirsch, I.S., Jungeblut, A., Jenkins, L., & Kolstad, A. (1993). Adult literacy in America: A first look at the findings of the National Adult Literacy Survey. Washington, DC: US Department of Education, National Center for Education Statistics. Kolstø, S.D. (2001). Scientific literacy for citizenship: Tools for dealing with the science dimension of controversial socioscientific issues. Science Education, 85(3), 291–310. Korfmacher, K.S., & Kuholski, K. (2008). Rochester’s healthy home: A community-based innovation to promote environmental health action. Environmental Practice, 10(1), 94–106. Kutner, M., Greenburg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of America's adults: Results from the 2003 National Assessment of Adult Literacy. NCES 2006–483. Washington, DC: US Department of Education, National Center for Education Statistics. Laugksch, R. C. (2000). Scientific literacy: A conceptual overview. Science Education, 84(1), 71–94. LePrevost, C.E., Storm, J.F., Asuaje, C.R., Arellano, C., & Cope, W.G. (2014). Assessing the effectiveness of the pesticides and farmworker health toolkit: A curriculum for enhancing farmworkers’ understanding of pesticide safety concepts. Journal of Agromedicine, 19(2), 96–102.

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Lindsey, M. (2017a). Activities for the general public: Information walks. Retrieved from http:// swehsc.pharmacy.arizona.edu/outreach/activities-general-public Lindsey, M. (2017b). Partnerships with tribal communities for environmental public health. Retrieved from http://swehsc.pharmacy.arizona.edu/outreach/highlights/american_indian Liu, C. H., & Matthews, R. (2005). Vygotsky’s philosophy: Constructivism and its criticisms examined. International Education Journal, 6(3), 386–399. Madrigal, D.S., Minkler, M., Parra, K.L., Mundo, C., Gonzalez, J.E., Jimenez, R., etal. (2016). Improving Latino youths’ environmental health literacy and leadership skills through participatory research on chemical exposures in cosmetics: The HERMOSA study. International Quarterly of Community Health Education, 36(4), 231–240. Mankikar, D., Campbell, C., & Greenberg, R. (2016). Evaluation of a home-based environmental and educational intervention to improve health in vulnerable households: Southeastern Pennsylvania lead and healthy homes program. International Journal of Environmental Research and Public Health, 13, 900. Marsili, D. (2016). A cross-disciplinary approach to global environmental health: The case of contaminated sites. Annali dell’Instituto Superiore di Sanita, 52(4), 516–523. McBeth, W., & Volk, T. (2010). The national environmental literacy project: A baseline study of middle grade students in the United States. The Journal of Environmental Education, 41(1), 55–67. McOliver, C.A., Camper, A.K., Doyle, J.T., Eggers, M.J., Ford, T.E., Lila, M.A., etal. (2015). Community-based research as a mechanism to reduce environmental health disparities in American Indian and Alaska Native communities. International Journal of Environmental Research and Public Health, 12(4), 4076–4100. Miller, J.D. (1998). The measurement of civic scientific literacy. Public Understanding of Science, 7, 203–223. Murphy, P.W., Davis, T.C., Long, S.W., Jackson, R.H., & Decker, B.C. (1993). Rapid estimate of adult literacy in medicine (REALM): A quick reading test for patients. Journal of Reading, 37(2), 124–130. National Center for Education Statistics. (2003). What is NAAL? In National Assessment of Adult Literacy (NAAL). A nationally representative and continuing assessment of English language literary skills of American Adults. Retrieved from http://nces.ed.gov/naal/ National Center for Education Statistics. (2005). What are the grade levels of NAAL materials? In National Assessment of Adult Literacy (NAAL), A nationally representative and continuing assessment of English language literary skills of American Adults. Retrieved from https://nces. ed.gov/NAAL/faq.asp#faq3 National Center for Education Statistics. (2015) National Indian Education Study 2015. Retrieved from https://nces.ed.gov/nationsreportcard/pdf/studies/2017161.pdf National Center for Education Statistics. (2016). Program for the International Assessment of Adult Competencies (PIAAC). Retrieved from https://nces.ed.gov/surveys/piaac/ National Education Association. (2017). American Indians/Alaska Natives: Education issues. Accessed online 4 Jan 2017 at http://www.nea.org/home/15596.htm North American Association for Environmental Education (NAAEE). (2011). Developing a framework for assessing environmental literacy: Executive summary. Washington, DC: NAAEE Retrieved from: https://naaee.org/sites/default/files/envliteracyexesummary.pdf. Nutbeam, D. (2000). Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15, 259–267. Nutbeam, D. (2008). The evolving concept of health literacy. Social Science and Medicine, 67(12), 2072–2078. O’Fallon, L., & Dearry, A. (2002). Community-based participatory research as a tool to advance environmental health sciences. Environmental Health Perspectives, 110, 155–159. Parker, R.M., Baker, D.W., Williams, M.V., & Nurss, J.R. (1995). The test of functional health literacy in adults. Journal of General Internal Medicine, 10(10), 537–541. Parker, R. (2000). Health literacy: A challenge for American patients and their health care providers. Health Promotion International, 15(4), 277–283.

K. M. Gray and M. Lindsey

Paul, M. P., Rigrod, P., Wingate, S., & Borsuk, M. E. (2015). A community-driven intervention in Tuftonboro, New Hampshire, succeeds in altering water testing behavior. Journal of Environmental Health, 78(5), 30–39. Pleasant, A., & McKinney, J.(2011). Coming to consensus on health literacy measurement: An online discussion and consensus-gauging process. Nursing Outlook, 59(2), 95–106. Plimpton, S., & Root, J.(1994). Materials and strategies that work in low literacy health communication. Public Health Reports, 109(1), 86. Ramirez-Andreotta, M.D., Brody, J.G., Lothrop, N., Loh, W., Beamer, P.I., & Brown, P. (2016). Improving environmental health literacy and justice through environmental exposure results communication. International Journal of Environmental Research and Public Health, 13(7), 690–717. Ramirez-Andreotta, M.D., Brusseau, M.L., Artiola, J., Maier, R.M., & Gandolfi, A.J. (2015). Building a co-created citizen science program with gardeners neighboring a superfund site: The Gardenroots case study. International Public Health Journal, 7(1) Pages 139–153. Ramirez-Zohfeld, V., Rademaker, A.W., Dolan, N.C., Ferreira, M.R., Eder, M.M., Liu, D., etal. (2015). Comparing the performance of the S-TOFHLA and NVS among and between English and Spanish speakers. Journal of Health Communication, 20(12), 1458–1464. Ramos, I.N., He, O., & Ramos, K.S. (2012). Improvements in environmental health literacy along the Texas-Mexico border following community-wide health education. Environmental Justice, 5(1), 32–37. Ratnapradipa, D., Brown, S.L., Middleton, W.K., & Wodika, A.B. (2011a). Measuring environmental health perception among college students. The Health Educator, 43(2), 13–20. Ratnapradipa, D., Rhodes, D.L., & Brown, S.L. (2011b). Evaluating pre-service teacher workforce: Environmental health knowledge, attitude and behavior. Online Journal of Workforce Education and Development, 5(1), 1–18. Ratnapradipa, D., Wodika, A.B., Brown, S.L., & Preihs, K. (2015). What does the public know about environmental health? A qualitative approach to refining an environmental health awareness instrument. Journal of Environmental Health, 77(8), 22–28. Rowlands, G., Khazaezadeh, N., Oteng-Ntim, E., Seed, P., Barr, S., & Weiss, B. D. (2013). Development and validation of a measure of health literacy in the UK: The newest vital sign. BMC Public Health, 13, 116. https://doi.org/10.1186/1471-2458-13-116. Safeer, R. S., & Keenan, J. (2005). Health literacy: The gap between physicians and patients. American Family Physician, 72(3), 463–468. Schure, M.B., Kile, M.L., Harding, A., Harper, B., Harris, S., Uesugi, S., & Goins, R.T. (2013). Perceptions of the environment and health among members of the confederated tribes of the Umatilla Indian reservation. Environmental Justice, 6(3), 115–120. Snow, C. E., & Dibner, K. A. (Eds.). (2016). Science literacy: Concepts, contexts, and consequences. Washington, DC: National Academies Press. Society for Public Health Education. (2014). What is environmental health literacy? Retrieved from: http://www.sophe.org/environmentalhealth/key_ehl.asp Sparks, S.D. (2017). Nation’s report card shows strengths, shortfalls for Native American students. Retrieved from http://blogs.edweek.org/edweek/inside-school-research/2017/03/native_ american_students_naep.html# United Nations Environment Programme. (1977). Tbilisi declaration. Retrieved from: http://www. eenorthcarolina.org/Documents/tbilisi_declaration.pdf Stevenson, K. T., Peterson, M. N., Bondell, H. D., Mertig, A. G., & Moore, S. E. (2013). Environmental, institutional, and demographic predictors of environmental literacy among middle school children. PLoS One, 8(3), 1–11. UNESCO. (2002). Global monitoring report, 2002: Is the world on track? Retrieved October 1, 2010, from http://www.unesco.org/education/efa/monitoring/monitoring_2002.shtml Valdez, M.K., Velez, M., Jenkins, I., Lindsey, M., & Chen, S. (2014). Knowledge and skills associated with environmental health literacy. Presented at the PEPH Environmental Health Literacy Conference.

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Weiss, B.D., Mays, M.Z., Martz, W., Castro, K.M., DeWalt, D.A., Pignone, M.P., etal. (2005). Quick assessment of literacy in primary care: The newest vital sign. Annals of Family Medicine, 3(6), 514–522. https://doi.org/10.1370/afm.405. White, B.M., Hall, E., & Johnson, C. (2014). Environmental health literacy in support of social action: An environmental justice perspective. Journal of Environmental Health, 77(1), 24–29. Williams, M.V., Davis, T., Parker, R.M., & Weiss, B.D. (2002). The role of health literacy in patient-physician communication. Family Medicine-Kansas City, 34(5), 383–389. Zarcadoolas, C., Timm, E., & Bibeault, L. (2001). Brownfields: A case study in partnering with residents to develop an easy-to-read print guide. Journal of Environmental Health, 64(1), 15–20.

Chapter 3

Communication Research intheEnvironmental Health Sciences KamiJ.Silk andDanielTotzkay

Abstract The need to effectively communicate evidence-based environmental health messages to a range of stakeholders is fundamental for informed decision making about environmental risk factors. There are a range of strategies used to help communicate emerging environmental health science, but there are clear perceived drawbacks when relying on many of these approaches. For example, research findings and their environmental health implications are often communicated by scientists who focus on the accuracy and comprehensive explanations of the research rather than sensitivity to factors that will increase the acceptance of the environmental health messages. Communication efforts also are sometimes led by creative professionals who might be perceived as oversimplifying science so much that the true implications of the research are not appropriately reflected. Science journalists, often a primary source of information for lay audiences, are generally reliable interpreters of research; however, their availability and the outlets for which science journalists typically write are unlikely to maintain an ongoing focus on specific environmental health issues unless a crisis or timely news event is unfolding– and soon after their initial report on an issue, their interest wanes. While scientists, creative professionals, and journalists have an important role to play in communicating about environmental health issues, so do communication researchers. In this chapter, a communication science approach is proposed to facilitate the creation of high quality environmental health risk messages that are evidence-based, theory-driven, and tailored to the needs of priority audiences. Key topics addressed in the chapter are the importance of formative research for understanding specific audience’s preferences and beliefs (audience analysis) and the identification of relevant media formats or channels to disseminate information through (channel selection), theory informed message design, implementation strategies, and evaluation approaches to reach a wide range of stakeholders with maximum impact. Finally, the chapter will

K. J. Silk (*) Department of Communication, University of Delaware, Newark, Delaware e-mail: [emailprotected] D. Totzkay Department of Communication, Michigan State University, East Lansing, MI, USA © The Author(s) 2019 S. Finn, L. R. O’Fallon (eds.), Environmental Health Literacy, https://doi.org/10.1007/978-3-319-94108-0_3

K. J. Silk and D. Totzkay

systematically incorporate examples from the Breast Cancer and Environment Research Program (BCERP) to illustrate key topics, processes, and strategies. Keywords Communication · Communication science · Evaluation · Message design · Breast cancer and the environment research program · Extended parallel process model · Heuristic systematic model · Theory of normative social behavior · Diffusion of innovations

Communication Challenges The development of effective environmental health messages is rife with challenges. First, there is the question of readiness to communicate about a particular environmental factor; some groups think the precautionary principle should reign, while others are much more cautious and would rather wait to see more evidence before identifying an environmental factor as a risk. The precautionary principle is invoked when evidence is inconclusive, only derived from animal studies or when there is no consensus about the implications of findings. In those cases, risk messages may take a better safe than sorry approach. In the BCERP, for example, there is a natural tension of when to share emerging scientific findings from studies between advocates and scientists due to their differing, yet complementary roles in research. Advocates have specific stakeholders who rely on them to keep them informed about potential risks and their implications as findings emerge from current studies. In contrast, scientists work on long-term programs of research, which often means they are more tentative in making risk reduction recommendations based on their emerging findings. Whether or not the audience will feel susceptible or perceive a risk as severe enough to warrant their attention is also a challenge, which can undermine any potentially recommended risk reduction activity if perceived susceptibility or severity is low. For example, women with no family history of breast cancer may not feel susceptible to the disease. This perception is problematic because women with no known family history of breast cancer are at risk due to a large range of factors not just family history. Another challenge is the inherent complexity associated with communicating about scientific topics, which may immediately cause individuals to tune out if they perceive the environmental health message as too cognitively complex to process. For example, individuals with limited English proficiency as well as those with low literacy or low scientific literacy may be intimidated by seeing words like perfluorooctanoic acid, endocrine disruptors, and susceptibility in an environmental health message. Finally, there is the production challenge of creating an environmental health message that is engaging, impactful, and effective among diverse audiences. There is indeed a benefit in trying to reach a large audience through media markets due to the potential volume of individuals an environmental health message might reach, but the ability of a more general, less tailored message to meaningfully impact that large audience decreases. In attempting to reach a large audience of different stakeholders, the BCERP currently has online toolkits that provide educational information about breast cancer and the environment. The tool-

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kit includes information for parents and caregivers, health professionals, and outreach organizations, but the effectiveness of the toolkit materials for each of these audiences currently remains unknown. In sum, this range of challenges can be addressed by a focus on message production, processing, and evaluating as fundamental to the development of effective messages.

Theoretical Frameworks Prior to explaining the processes for designing effective messages, it is important to understand the theoretical constructs that communication researchers use to guide their development of messages and to understand audience receptivity. Although there are a wide range of theoretical frameworks used in communication research, four theories/frameworks are prioritized in this next section. Their selection was based on their relevance to environmental health message design, implementation, and evaluation, as well as their potential to contribute to research related to environmental health literacy. Extended Parallel Process Model The Extended Parallel Process Model (EPPM; Witte 1992), evolved from Leventhal’s danger/fear control work and Rogers’ Protection Motivation Theory to explain how individuals process fear appeal messages and how that processing influences danger and fear control processes (Leventhal 1971; Rogers 1995). Fear appeals are persuasive messages designed to scare people by describing through words and/or visuals all of the awful things that will happen if they don’t engage in the recommendations of the message (Witte 1992). The EPPM specifies under what conditions fear appeals will work and when they will not. Specifically, the EPPM suggests people respond to threatening messages in different ways. Individuals who perceive a threat and think they have the ability to reduce or eliminate that threat will engage in danger control (adaptive) processes. Contrarily, individuals who perceive a threat, but do not feel capable of taking preventative action will engage in fear control (maladaptive) processes. Finally, individuals who do not perceive any threat will have no response. There is debate over the use of fear appeals as a persuasive strategy as some would perceive that the use of positive affect is a more ethical approach. However, there has been a large body of research to suggest that individuals need to perceive a threat before they will consider taking any action (Maloney etal. 2011). The EPPM acknowledges that a threat needs to be balanced with a strong efficacy component to the messages so that individuals can act on the threat. In the environmental health context, different environmental exposures have emerged over time as posing threats to human health. For example, once there is enough scientific evidence to deem a chemical as potentially harmful, efforts to communicate about the chemical as a risk factor follow. These efforts often take a fear approach as message designers frame the chemical as a “threat” and then provide the recommendation to avoid the chemical, perhaps providing specific strate-

K. J. Silk and D. Totzkay

gies like reading labels, choosing different products, wearing gloves, or removing products from households. Messages that follow this type of pattern may unknowingly be using the fear approach specified in the EPPM, particularly if the threat uses words and visual cues to intensely characterize the threat as immediate, pervasive, and severe for those who are exposed. If the messages are created with a high enough threat and efficacy level, they have the greatest likelihood of success. In the BCERP, messages about specific risk factors did not engage the EPPM because messages pertained to puberty as a window of susceptibility for young girls and also because the threat of breast cancer is not immediate for this audience. Discussing the negative and potentially severe impacts of breast cancer was deemed inappropriate for messages designed for caregivers to share with their daughters; rather than induce fear in caregivers and young girls, focusing on lifelong risk reduction strategies was a more ethical and positive approach. A key point here is that implementing a single theoretical approach to all environmental health message design will be ineffective. A consideration of a full range of possibilities related to the intended audiences and their information needs is necessary to make informed decisions about theoretical message design approaches. The Heuristic Systematic Model The heuristic systematic model (HSM) of persuasion (Chaiken etal. 1989) outlines conditions under which individuals cognitively process environmental health messages either deliberately, called systematic processing, or using surface-level cues unrelated to the content of the message itself, known as heuristic processing. When a message is processed systematically, its information is scrutinized for its validity and relevance to pre-existing knowledge. This makes messages more easily recalled and inspires thoughts relevant to the message’s topic (Chaiken and Ledgerwood 2011; Zuckerman and Chaiken 1998). On the other hand, when a message is processed heuristically, only a limited amount of cognitive resources is applied through simple decision rules like if the message’s source is expert or if the viewpoint expressed is popular (Eagly and Chaiken 1993). In this case, past experiences aid in making rules that provide fast inference-making to form “good enough” judgements (such as credible sources being believable) (Chaiken etal. 1989). An environmental health message will be systematically processed when a reader believes they are not confident they can make accurate judgments (Chaiken etal. 1989). So, to motivate individuals to more extensively process a message and retain its information, they must perceive they need more information and be presented with a message that clearly indicates it contains that kind of information. However, the level of knowledge that one perceives is needed is reliant on an individual’s motivation and ability. Motivation to process a message generally pertains to the involvement felt in environmental health issues and/or how important environmental health is to oneself (see Cho and Boster 2005). If it is believed the environment plays little role in one’s health or someone thinks it is not worth their time to think about environmental health issues, it is unlikely an environmental health message will be closely attended to. Ability to process information operates similarly and is particularly relevant to environmental health literacy. If an individual

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simply cannot understand an environmental health message, perhaps due to limited time or literacy, they will simply not be able to process the message systematically (Smith etal. 2017). Heuristic cues like the message source’s credibility or attractiveness will drive the evaluation of the environmental health message and information will likely not be retained. So, an audience with limited environmental health literacy may automatically rely on surface-level cues of environmental health messages or may not even be motivated to allocate cognitive resources to scrutinize such messages. It is worth noting that little research on the HSM focuses on the idea of having sufficient information and the explicit role it plays in information processing (Nabi and Moyer-Gusé 2013). According to the original conceptualization of the HSM (Eagly and Chaiken 1993), individuals process environmental health information systematically only until they feel they have enough environmental health information. After “sufficiency” is reached, individuals processing environmental health information would then use less cognitively-taxing processing strategies like relying on expertise and popular viewpoints. Most research bypasses the idea of sufficiency, however, and instead focuses only on the role of motivation and ability on processing strategy. In the future, research on environmental health information processing should refine measurements of information sufficiency and determine more precise relationships between audience or message factors and information processing strategies. The Theory of Normative Social Behavior One way that audience members may make decisions about information processing or in taking cues about how to act is by referencing group norms. The Theory of Normative Social Behavior (TNSB) delineates how perceptions of the thoughts and actions of close, referent others often shape one’s own behavior (Rimal and Real 2005), especially in the context of the environment and health. Leveraging the perception of a behavior’s frequency/ popularity (descriptive norms) and the perceived (dis)approval that comes with enacting a behavior (injunctive norms), social norms research has shown consistent influence of norms on behaviors such as reduction of littering (e.g., Cialdini etal. 1990), eating habits (e.g., Rah etal. 2004), hand washing (e.g., Lapinski etal. 2013), and water conservation (Lapinski etal. 2007). The TNSB predicts that one’s perception of a behavior’s descriptive norm directly influences whether one will intend to also perform that behavior. Descriptive norms provide information about what is socially adaptive in a given context (Reno etal. 1993) and act as a heuristic cue (Cialdini etal. 1990). This is the case, however, only when a favorable injunctive norm is perceived, such that people close to an individual are perceived to approve of doing that behavior. So, an individual will be more likely to perform an environmental risk reduction behavior when important people in their social circle are thought to already do it and when those same close others are thought to approve of also doing that behavior. The TNSB also predicts that an environmental health behavior’s descriptive norm will exert influence on whether an individual will also perform that behavior when it is perceived to provide the benefits one seeks (outcome expectancies) (Bandura 1986), when the individual feels closely tied to

K. J. Silk and D. Totzkay

their social network (group identity) (Wilder 1990), and when the environmental health behavior or issue is closely tied to one’s sense of self (ego involvement) (Johnson and Eagly 1989). Environmental health messages can leverage social norms by first conducting formative research to understand the behavior’s popularity and, then, to communicate social approval information around the behavior (i.e., people who the audience member cares about think it is a good idea for them to adopt the risk reduction behavior). These messages can also explain how the behavior will help an individual achieve what is important to them, and highlight the ways the issue related to that behavior is central to the individual’s sense of self. To date, research has supported the role of outcome expectations on the norm – behavioral intention relationship (e.g., Rimal 2008; Rimal et al. 2011), as has research regarding the role of group identity (e.g., Glynn etal. 2009; Louis etal. 2007). Little research, though, has examined the role of involvement. There is some recent evidence to support the role of the multifaceted construct of involvement (Lapinski etal. 2015), but more research is needed to explicate how norms, characteristics of the behavior, and involvement interact. This is especially the case since involvement is comprised of the centrality of a given issue or behavior to one’s self- concept (value-relevant involvement), the importance of enacting a behavior in order to be accepted socially (impression-relevant involvement), and, the original conception of involvement, i.e., how central an issue or behavior is to one’s own goal-attainment (outcome relevant involvement) (Cho and Boster 2005). The consideration of social norms is especially relevant when considering lay individuals with varied levels of environmental health literacy. Given that social norms, especially descriptive norms, can be used as a simple decision cue (Rimal and Real 2005), they lend themselves well to interventions targeting individuals with a low ability to consider nuanced and complex environmental health information, as noted with the HSM, previously. Environmental health message designers can employ the TNSB by identifying the prevalence of the specific behavior, like reducing exposure to an environmental risk, within a target audience while also gauging relative approval and expectations around that behavior. For example, an environmental health message could state that most women support reducing exposure to perfluorooctanoic acid (PFOA) in household products and you and your family would also benefit from doing so too. Emphasizing a behavior’s popularity and the social approval that comes with it, as well as how the behavior will help achieve one’s goals and be in-line with their sense of self, environmental health message designers can potentially promote environmental health behaviors, regardless of literacy demands. Diffusion of Innovations A final framework that also leverages the influence intrinsic to one’s social network is the diffusion of innovations (Rogers 2003), which outlines a variety of factors to explain how information, behaviors, programs, and products spread or get adopted across social groups. This has been applied to many contexts, including HIV prevention (e.g., Collins etal. 2006; Dearing etal. 2013), public policy (e.g., Boushey 2012), tobacco control (Studlar 1999), and physical activity programs (Dearing etal. 2006). Overall, the success of adopting the diffusion

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approach to environmental health messages and programs is in the segmentation of an audience into different categories of readiness to adopt a new, innovative environmental health behavior. These segments make up a larger social system for the innovation to spread across (Dearing 2008) and choose whether to adopt an innovation for a number of social and individual reasons. Diffusion of innovations also leverages opinion leaders, or certain individuals who assume a role in their social network(s) that comes with increased influence in the spread of a new behavior or product (Dearing 2008). The diffusion paradigm offers environmental health research an efficient framework such that a behavior can be specially targeted to a small subset of potential, influential adopters who will in turn influence a majority within their social system (Dearing 2008), and facilitate wide-spread adoption of the behavior. An audience differs with regards to how innovative they are and can be segmented based on how early in the diffusion process they will adopt an innovation (Dearing 2008). Audiences are generally segmented into those who are the earliest to adopt an innovation based on its novelty and their own perception of limited risk (innovators), those who carefully appraise the innovation along numerous dimensions before choosing of whether to adopt it (early adopters), and a subsequent large majority, who adopt an innovation gradually as early adopters exert social, normative pressure. As noted, interventions leveraging this paradigm target opinion leaders, who are early adopters who tend to be highly influential and can become conduits of specialized, innovation-related knowledge. But, opinion leaders and other early adopters decide to adopt an innovation only when they positively appraise it along a number of attributes. These include the innovation’s complexity, compatibility, observability, and trialability (Wejnert 2002). Complexity refers to how difficult the behavior is to understand or do, such that if a risk reduction behavior involves many steps or is completely novel, it is likely to be seen as overly complex and will not be adopted. But, if it is simple, like purchasing a readily available product or by changing how often pesticides are applied, the innovation will appear simple and adoption is likely. It is this dimension that most readily applies to environmental health literacy, with a focus on reducing the perceived complexity of information and overcoming cognitive barriers to understanding (Finn & O’Fallon, this volume). Another related attribute that is appraised prior to adoption of the innovation is whether it is compatible with one’s lifestyle. If an environmental health risk reduction behavior is atypical or otherwise opposed to an individual’s normal, established pattern of behavior, it is not likely to be adopted. Further, an innovation should be observable such that it can easily be seen prior to the decision to adopt is made. This means that if an individual can physically witness an environmental health risk reduction behavior being modeled by others or can readily observe its positive consequences, then it will more likely be adopted. Finally, an innovation is trialable when it can easily be implemented without full commitment on the part of the adopter. This means that a risk reduction behavior that can easily be given up after a short-term “trial period” is one that will be more likely adopted. By being able to test out a behavior prior to a larger commitment, uncertainty and other barriers that interfere with behavioral adoption can be overcame.

K. J. Silk and D. Totzkay

Once positive appraisal of the environmental health innovation is established among the early adopters, members of the “late majority” will begin to pay attention to it and seek additional information from opinion leaders. This is to reduce the uncertainty created from learning about some unknown innovation and to learn if it is advantageous to how things are currently done (Dearing 2009; Wejnert 2002). Thus, an innovation is diffused through a process of learning about the innovation (awareness), feeling social pressure either directly from an opinion leader’s advocacy or by perceiving a normative pressure to conform to what is popular (persuasion), deciding whether or not to adopt the innovation (decision), actually utilizing the innovation (implementation), and making the innovation a sustainable activity or perception that will be upheld over time (continuation). This means that an environmental health intervention using the diffusion paradigm should provide messaging that will promote the social influence activities of opinion leaders. Opinion leaders will then market the environmental health innovation to be seen as something that inspires curiosity and thus a drive to seek out information on it. Then, the innovation may reach a critical mass within the audience and be adopted via social influence and normative forces. Overall, the environmental health innovation should be easy to understand, should fit into the audience’s current lifestyle, should be readily observable, and should be low-commitment in the short-term. Environmental health innovations that are seen as otherwise will likely not be adopted and thus will not diffuse across an audience. As such, the designers of environmental health messages should consider these attributes in the audience of interest and to what extent they should be represented in messages put forth related to environmental health risks. One key limitation of research on diffusion and a venue for future research lies in the leveraging of opinion leaders. Specifically, diffusion relies on the classic mechanism studied in communication of uncertainty reduction (Dearing 2009), and assumes that the perception of an unfamiliar innovation will inspire uncertainty. Following assumptions outlined in uncertainty reduction approaches to communication (Hogan and Brashers 2009), potential adopters are fundamentally opposed to feeling any type or amount of uncertainty and will seek information to reduce it, particularly from opinion leaders who are seen as being familiar with the innovation. However, prominent communication theories (i.e., Afifi and Weiner 2004; Brashers et al. 2000) suggest that uncertainty is not necessarily maladaptive and that, in certain circ*mstances, individuals may actually desire to be uncertain. For instance, knowing exactly how many dangerous chemicals one is routinely exposed to and extensive details on the negative impact on one’s health that exposure may result in is likely to create discomfort. In fact, one may actually wish to be blissfully ignorant, thus maintaining uncertain about such a topic. In this case, that individual may avoid new information related to those environmental risks or even find disconfirming information to question the certainty of a particular environmental health message. The question remains, then, of how does this impact the diffusion process? More research is needed to determine how these uncertainty management approaches may combine with diffusion and in what cases might they actually undermine the diffusion process.

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Processes forDesigning Effective Messages The aforementioned theories help to increase the likelihood that an environmental health message will be effective by providing predictive empirical relationships between theoretical constructs and a framework for considering the uptake of an innovation. Communication research provides evidence that incorporating relevant theory as well as tailoring messages to audience needs and preferences, and creating messages that are engaging in their content and design will maximize the potential for desired message outcomes. Evaluating the effectiveness of prosocial messages– those messages that aim to improve or benefit others, health outcomes, and/or environmental outcomes – is a crucial component that is rarely assessed. While advertisers and businesses strive to evaluate the effectiveness of their messages through measuring public exposure to messages and product sales, the impact of other types of messages such as environmental health messages remain largely unknown as assessment efforts are minimal to nonexistent. Especially for groups who want to demonstrate the impact of their environmental health messages or campaigns, using a rigorous approach to develop messages will aid their ability to engage in evaluation of effects and effectiveness. Formative research, process evaluation, and summative evaluation techniques are three important components that provide a comprehensive approach to the development and assessment of environmental health messages. Formative Research for Message Design Before creating message concepts, it is imperative for all message designers to engage in formative research so they understand audience characteristics, needs, and preferences. Formative research can take the form of comprehensive literature reviews of relevant research on potential audience segments as well as data collection efforts to better understand barriers, facilitators, and preferences of potential audience segments. Formative research should help to identify preferred channels for audiences as well as credible sources they turn to for information about the topic of interest. The mode of communication selected is important as there is a tendency for groups and organizations to develop websites and then point people to them as a key strategy for communicating about health, environment, and science topics with lay audiences, whether or not the audiences are apt to refer to the websites. This tendency is not ideal because audiences are inundated with information and websites are often static with few updates to maintain their interest in the content. While people do seek environmental health information on websites every day, websites that are not well-managed will not be accessed frequently by users. Identifying credible sources for the information is important because of distrust felt sometimes within communities toward figures of authority, government sources, and other organizations and individuals who are perceived to be less credible. For example, before developing messages for the BCERP, communication researchers and advocates engaged in focus group research to better understand parents’ and caregivers’ knowledge, efficacy, intentions, and communication preferences related to environmental risk factors and breast cancer. Focus groups were conducted by

K. J. Silk and D. Totzkay

community advocates across different regions of the United States so that outreach and engagement personnel could tailor their messages according to local audience needs. Communication preferences asked about information sources, preferred channels for receiving environmental health messages, and other questions about how the information should be visualized. It is also important to note that the questions asked during in the BCERP focus groups were based on theoretical constructs relevant to factors that can make an environmental health message more or less effective. Some of these factors were described earlier in this chapter (see Theoretical Frameworks, pages 47–52) as relevant theoretical frameworks that address how audiences process messages. All of the research activities completed before any message content is written or designed, such as focus groups or other methodologies that capture audience perceptions and communication preferences, is considered pre-production formative research; activities done to create and test messages are considered production research. Production research is where science and researcher creativity begin to work synergistically for maximizing environmental health message effects. The use of theory in the message design processes is fundamental to a communication science approach. At the production stage, environmental health message designers may decide they want to use a fear appeal approach to increase threat perceptions, or an inoculation approach to help prepare audiences for “attacks” on their belief systems, or some other theoretical framework that provides structure for creating impactful messages. As noted in the previous section, there are multiple theories for consideration when designing messages and for understanding how audiences may process those messages. The production stage is when environmental health message concepts are created, tested, refined, and ideally piloted again to garner audience response data. Response data could again be collected via focus groups, but also more generalizable data could be collected from online experimental message exposures or theatre-style research where an audience is exposed to the would-be message. The goal of the production phase is to finalize environmental health messages with this additional input so they are refined and polished for dissemination. Silk etal. (2014) provides results from collaborative formative research that tests breast cancer risk reduction messages on mothers with daughters. Research from the BCERP (which is available at bcerp.org) has resulted in a range of articles that illustrate communication approaches that can improve the effectiveness of reaching audiences with high quality environmental health messages. Process Evaluation During Message Implementation Once audiences have been defined and environmental health messages have been created, tested, and revised, a communication plan should be developed to disseminate messages to audiences. A communication plan specifies measurable objectives and organizes communication efforts by identifying a timeline for the dissemination of messages. It includes details on what messages will go to what audiences through which channels at what time and with what frequency. When creating measurable objectives, environmental health message designers need to define if the goal of the messages are to increase

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awareness, knowledge, efficacy, intentions, or to change specific behaviors. If a campaign has unclear or ambiguous objectives, it is difficult to engage in process and summative evaluation procedures. Unfortunately, although a communication plan is a strategic document that is typically used for larger campaign efforts, it is seldom created and used in small-scale community based efforts that involve few messages and channels. The lack of a communication plan in these instances is a mistake because a communication plan is a document that will explicate communication objectives and specifics that provide a baseline for evaluation of communication efforts. Specifically, process evaluation evaluates how closely actual implementation and dissemination efforts have aligned with the communication plan; thus, without a communication plan with clear, measurable objectives it is impossible to identify whether or not dissemination has gone as planned. Process evaluation is important because it allows for an understanding of why particular communication efforts are effective, and it allows for changes in implementation in the case that efforts are not going as planned– and often, not everything goes as planned. Ultimately, process evaluation is the monitoring of implementation of designated communication activities and it is linked to one’s ability to demonstrate message effects and effectiveness. Summative Evaluation for Effects and Effectiveness At the end of communication efforts or campaigns, it is essential to determine whether exposure to environmental health messages has an impact. Summative evaluation generally refers to the determination of intended and unintended effects as well as the determination of effectiveness. Effects refer to any impacts traced back to communication efforts even if those effects are not illustrative of campaign objectives. For example, in designated driver campaigns, messages were successful in increasing the use of designated drivers, which was an intended outcome that also demonstrated effectiveness based on campaign objectives. However, an unintended effect was that those individuals who were not designated drivers actually drank more than they normally would because they knew they did not need to drive; thus, an unintended effect was an increase in total alcohol consumption among those exposed to the campaign. Methods for capturing effects require research designs that ideally include control conditions, which is sometimes difficult to do. Generally, a pre-test/posttest design where one samples a population before exposure to environmental health messages and then samples the same population after exposure is a minimum approach to be able to attribute any effects to the exposure. Another strategy is to find reliable baseline data prior to the launch of any communication efforts and then compare those data to post-test data collected after the communication efforts. Ideally, a control group in the form of an equivalent community or matched geographic area can be identified as a comparison group. There are more sophisticated research designs to measure effects but these require resources that are usually not designated for the evaluation of environmental health communication efforts.

K. J. Silk and D. Totzkay

Research andOutreach Ample communication research in the realm of environmental health behavior and environmental health literacy has taken place through the BCERP, a transdisciplinary collaboration funded through the National Institutes of Environmental Health Sciences and the National Cancer Institute. In the BCERP, communication scientists use theories and methodologies such as the ones previously outlined to partner with community advocates, biologists, and epidemiologists to understand the role of environmental factors– such as chemicals like bisphenol-A (BPA) and PFOAin breast cancer development with a particular focus on exposure during the “window of susceptibility” of puberty. As the scientific evidence about these risks grow, BCERP communications researchers work to understand the perceptions and information needs of women across the United States related to breast cancer and the environment in order to create more effective environmental health messages. This formative research then informs strategies for message translation and dissemination for the findings gleaned from projects lead by BCERP biologists and epidemiologists to promote knowledge gain and risk reduction of potentially harmful environmental exposures. A primary target population for BCERP activities and research is parents and caregivers of pre-pubertal daughters in order to motivate the avoidance of environmental risk exposures for said daughters, as parents are identified as these young girls’ primary decision-makers. Thus, the issue of environmental health literacy is intrinsic to the research questions examined by BCERP researchers and the challenges associated with the concept have manifested themselves across BCERP studies. The most salient issue concerning environmental health literacy in communicating to this population is the consequences of literacy on response to environmental health messages. While complicated messages with more demanding literacy levels likely prevent individuals of lower environmental health literacy from comprehending the message and subsequently acting on any recommendations, evidence suggests that tailoring such messages to lower literacy levels helps everyone. In two studies by BCERP researchers, it was found that messages written at a lower health literacy level promoted knowledge gain of various chemical exposures and breast cancer risk, regardless of participant literacy level (Smith etal. 2013; Smith etal. 2017). This finding demonstrates that considerations of message literacy demand can lead to greater retention of information, such that messages written at less cognitively-demanding levels can promote more extensive processing of messages, per the HSM (see above; Chaiken etal. 1989). These studies demonstrate that while greater literacy promoted message processing, tailoring messages to those with lower ability to understand breast cancer and breast cancer risks benefited all individuals, regardless of their individual ability. However, while this seems promising for environmental health literacy research and message implications, other BCERP research complicates message recommendations. In another study examining the effect of message literacy level on women of different ability, contrary results were found such that message literacy level may not facilitate knowledge gain as expected.

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Specifically, more accessible messages about a chemical exposure did not increase belief in the chemical being a risk nor attitude toward the chemical (Hitt etal. 2015). This inconsistency in results indicates there is still work needed in the scholarship of environmental health literacy and more care is needed around messaging for even more commonly studied risk exposures. Yet, there are other issues related to environmental health literacy that have been addressed by BCERP researchers that are not directly related to the processing and response to environmental health messages. Specifically, studies have identified complex cognitions around breast cancer and the environment that complicate message processing and risk reduction behavior, in addition to examining the prevalence of breast cancer and environment information in women’s memory and in their greater informational environment. First, evidence from focus groups and surveys suggests that women are, on the whole, uncertain about or confused with information linking environmental exposures to breast cancer (Neuberger et al. 2011; Silk et al. 2006; Volkman and Silk 2008; Yun et al. 2009). This uncertainty and ambivalence regarding the role of the environment in breast cancer risk likely reduces the likelihood of women extensively processing and considering relevant environmental health risk information, per the HSM (Chaiken etal. 1989). A consideration of environmental health literacy therefore must include a consideration of how diminished literacy affects appraisals of uncertainty or ambivalence, as these can, at best, prevent adequate processing of environmental health recommendations or, at worst, undermine them and prevent action. If this uncertainty is overcome, though, the HSM predicts effortful processing of messages involves relating new information in the message back on to one’s knowledge and experiences. One way to assess the information women may refer to in their memory is by analyzing influential messages from one’s past that can guide behavior, if recalled, known as “memorable messages” (Smith and Ellis 2001; see Knapp etal. 1981). BCERP researchers examined some of these accessible messages that related to environmental breast cancer risks in terms of the sources of those messages, whether the focus of said messages are on detection or prevention of risk-related morbidity, and other factors that likely affect and are affected by one’s EHL. These studies found that the proportion of messages that were prevention-focused were significantly less prominent than awareness-, detection-, or treatment-focused messages (Smith etal. 2009a, b), showing that there remains a strong need for greater focus on prevention/risk reduction activities. Further, negative emotions were frequently evoked from both prevention and detection messages (Smith et al. 2010), and messages from healthcare professionals were associated with increased likelihood of enacting detection rather than prevention behaviors (Smith etal. 2009b). Given the nature of messages held in women’s memory regarding breast cancer and the environment, it is not surprising that BCERP studies suggest action like seeking out information connecting breast cancer to the environment or taking action to reduce one’s daughter’s exposure to environmental breast cancer risks is not likely. According to the EPPM (see above; Maloney etal. 2011), action would likely be taken if a mother perceives environmental risks to be serious and to have a

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substantial effect on breast cancer development, as well as to feel like risk reduction is possible and effective. Without a perception of threat, no impetus to even consider action exists, and without appraisals of efficacy, behavioral response will either fail or never happen. BCERP studies suggest that when women consider breast cancer and environment factors, they are pre-occupied with the negative consequences of risk reduction and disease detection behaviors, like the pain involved in mammography (Silk etal. 2006; Silk etal. 2014; Volkman and Silk 2008. Health literacy has been associated with diminished efficacy in the past (i.e., Torres and Marks 2009), so it is reasonable to believe that inaction in the face of environmental risks to breast cancer is in part due to a perceived lack of efficacy for a risk that may occur decades in the future and, in part, as a result of limited environmental health literacy. As a lack of knowledge is perceived in this population (Silk etal. 2006; Volkman and Silk 2008), leveraging environmental health literacy in support of more favorable efficacy appraisals is one way to promote the reduction of exposure to environmental risks. Assuming ample efficacy to take action does indeed exist within this population and women choose to seek additional information on reducing the risk of breast cancer through avoidance of environmental risks, there is evidence to suggest that information available to them is both unsupportive of immediate actions and at odds with their potentially limited environmental health literacy. For instance, current and past research has documented the extent to which news publications and easily accessible webpages contain information related to breast cancer and its link to the environment. Early studies show a large amount of breast cancer-related information is available, but little strategic behavior change motivators are present. Specifically, prevention-based news stories were found to focus narrowly on the use of pharmaceuticals (Atkin et al. 2008), while websites with breast cancer information were void of strategic behavior change motivators like those outlined in the EPPM (ClarkHitt etal. 2010; Whitten etal. 2008). Because of this, these presentations are less likely to prompt action among women or their daughters. Further, another analysis found that breast cancer websites also seldom tailored content based on diversity elements or literacy levels, overly relying on statistics and numeric information that is difficult for low literacy individuals to understand (Whitten et al. 2011). While a wealth of information can be found about breast cancer in news media and on the Internet, more attention to motivational cues is needed in conveying that information. In fact, preliminary evidence suggests that this trend of limited motivational content continues for websites even in the contemporary informational landscape (Totzkay etal. 2017). This demonstrates that modern advances in information access has not led to the provision of comprehensive information regarding the environment and breast cancer, and many factors studied by BCERP biologists and epidemiologists for their contribution to breast cancer morbidity are not found on webpages most likely to be accessed by those seeking breast cancer information via popular Internet search engines. This all has a wide variety of implications for those of varied environmental health literacy levels, as the absence of information, both in general and specifically tailored to lay audiences, likely contributes to further misunderstanding of the importance of the environment to health.

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Lastly, a variety of studies have measured the effect and perceptions of environmental health messages regarding breast cancer. Evidence suggests that mothers, acting somewhat as opinion leaders per the diffusion paradigm (see above; Rogers 2003), are ambivalent regarding the role of the environment in breast cancer development (Neuberger etal. 2011; Yun etal. 2009), despite feeling capable of providing a healthy lifestyle for their daughters. This is concerning from an environmental health literacy perspective since it implies that knowledge of the effects of environmental factors on one’s health is missing, perhaps due to how complex presentations of this information is. It could be that the information either does not exist in one’s informational ecosystem (e.g., Totzkay et al. 2017), or it is just not presented in effective ways (Clark-Hitt etal. 2010; Whitten etal. 2008; Whitten etal. 2011). It could also be that the environmental health information around breast cancer is overly vague or presented in abstract language, as BCERP research has indicated that messages presented like this were less likely to prompt action than recommendations using specific and direct language (i.e., Silk et al. 2014). It appears that mothers are not adopting the innovation of concern for environmental risks to breast cancer development due to an unfavorable appraisal of its innovation characteristic (Dearing 2008; Wejnert 2002). In considering environmental health literacy, the attribute being weighed here is likely complexity, in that thinking about the abstract nature of environmental risk exposure and the ways it can promote breast cancer development later in life is difficult to think about and some risk reduction activities may be difficult to implement. As a result, mothers likely do not favorably appraise the innovation of concern for the environment in breast cancer development and, thus, dismiss it. If favorable appraisals do occur, however, there is some evidence that mothers can view this type of environmental health information as useful and may promote its dissemination to their personal networks. In fact, combining much of the research outlined here into understandable, accurate, and easy-to-use magazine-style ads for breast cancer risk and the role of the environment resulted in perceptions of credibility and relevance, in addition to that intention to spread the information (Silk etal. 2014).

Future Directions Communication science is novel to many in the environmental health sciences. However, there are strong possibilities for the discipline to help further translational activities. Communication scientists are natural partners for facilitating increased public understanding of science, including environmental health issues, because of their audience-centered approach and understanding of theoretically designed messages. For example, communication scientists are well-situated to engage in implementation science and to investigate the effectiveness of different partnership models and their impact on scientific innovation and outcomes. There are also opportunities to investigate social media and social networks to better leverage them for scaling-up of environmental health communication efforts. The computational

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opportunities associated with social media data scraping could provide algorithms for leveraging social media for environmental health issues. Educational gaming and immersive media applications (see Chapter 10) also provide an opportunity to engage individuals about environmental health issues, which could increase their scientific literacy as well as increase their motivation to engage in recommended practices as they deal with environmental risk factors and other challenges. Another area where there is great promise is at the neurocognitive level; specifically, investigating how the brain responds to environmental health messages will provide new insights for message designers. As researchers continue to gather neuro response data, new theories will be built that can inform best practices and approaches to building effective environmental health messages.

Conclusion In recent years, there has been a stronger focus on the need for environmental health scientists to translate and communicate their findings for lay audiences. To meet this need, different partnerships with community partners, advocates, and communication scientists have evolved as demonstrated by large programs of research like the BCERP. While community partners and advocates are outstanding partners with trusted relationships with their stakeholder communities, communication scientists also play a crucial role in addressing communication needs. The value of communication science to environmental health risk message design is that it provides a systematic approach that prioritizes theoretically informed messages, audiences, measurable objectives, and rigorous evaluation of message effects. This chapter emphasizes the EPPM, HSM, TNSB, and DOI as four theoretical frameworks that have particular utility for environmental health messages. The EPPM is a fear appeal theory that employs threat and efficacy as key message components, while the HSM focuses on how people process information. The TNSB emphasizes the role of norms in influencing behavior. All three of these theories provide useful insight by informing environmental health message designers about information and message strategies that might be influential for specifically defined audiences. In other words, these theories provide a roadmap for what to emphasize in environmental health messages. The fourth theory, DOI, also provides insight into how information, behaviors, programs, and products spread or get adopted across social groups. This DOI is helpful in the environmental health context because adoption of a new idea or a risk reduction behavior is a frequent goal of communication efforts, and facilitating the adoption of an innovation is challenging. The theories presented in this chapter are certainly not comprehensive of what is available for environmental health and risk communication efforts, but they do provide a sampling of available theories and some key constructs that are fundamental to message design efforts. Readers interested in a comprehensive review of health and risk communication related theories should refer to The Oxford Encyclopedia of Health and Risk Message Design and Processing series (Parrott 2018).

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This chapter also presents the overall process for developing effective messages using examples from the BCERP. Methods that are important for success are formative research efforts to learn about the audience for message development purposes, process evaluation to assess how the messages have been communicated during campaign or community dissemination efforts, and summative evaluation to assess effects and effectiveness of communication efforts. It is important to emphasize that engaging in formative research and evaluation processes are best practices in communication science, but resources are not always available or designated to engage in these processes. Prioritizing these best practices through budgeting for these processes is a gap that needs to be bridged by environmental health programs because higher quality messages are a more likely outcome when these processes are followed. For example, communication scientists in the BCERP have partnered with other scientists and advocates to engage in focus group research, message testing, and collaborative projects across multiple geographic areas to understand audience needs and preferences so that messages are sensitive to culture and literacy levels. These efforts demonstrate the role that a communication science approach can have in contributing to environmental health literacy efforts.

References Afifi, W. A., & Weiner, J. L. (2004). Toward a theory of motivated information management. Communication Theory, 14(2), 167–190. Atkin, C.K., Smith, S.W., Ferguson, V., & McFeters, C. (2008). A comprehensive analysis of breast cancer news coverage in leading media outlets. Journal of Health Communication, 13, 3–17. Bandura, A. (1986). Social foundations of thought and action: A social cognitive theory. Englewood Cliffs: Prentice Hall. Boushey, G. (2012). Punctuated equilibrium theory and the diffusion of innovations. The Policy Studies Journal, 40(1), 127–146. Brashers, D.E., Neidig, J.L., Haas, S.M., Dobbs, L.K., Cardillo, L.M., & Russell, J.A. (2000). Communication in the management of uncertainty: The case of persons living with HIV or AIDS. Communication Monographs, 67, 63–84. Cialdini, R. B., Reno, R. R., & Kallgren, C. A. (1990). A focus theory of normative conduct: Recycling the concept of norms to reduce littering in public places. Journal of Personality and Social Psychology, 58, 1015–1026. Clark-Hitt, R., Dean, M., Smith, S., Nazione, S., Atkin, C. K., & Whitten, P. (2010). Relative frequency of breast cancer website information topics: Environmental risk, prevention, detection, treatment, awareness, social support, and survivorship. Journal of Health and Mass Communication, 2, 36–55. Collins, C., Harshbarger, C., Sawyer, R., & Hamdallah, M. (2006). The diffusion of effective behavioral interventions project: Development, implementation, and lessons learned. AIDS Education and Prevention, 18(Supplement A), 5–20. Chaiken, S., Liberman, A., & Eagly, A. (1989). Heuristic and systematic information processing within and beyond the persuasion context. In J.S. Uleman & J.A. Bargh (Eds.), Unintended thought (pp.212–252). NewYork: Guilford Press. Chaiken, S., & Ledgerwood, A. (2011). A theory of heuristic and systematic information processing. In P.A. M.Van Lange, A.W. Kruglanski, & E.T. Higgins (Eds.), Handbook of theories of social psychology: Volume one (pp.246–266). Thousand Oaks, CA: SAGE

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Cho, H., & Boster, F.J. (2005). Development and validation of value-, outcome-, and impression- relevant involvement scales. Communication Research, 32, 235–264. https://doi.org/10.1037/ t08081-000 Dearing, J.W. (2008). Evolution of diffusion and dissemination theory. Journal of Public Health Management and Practice, 14(2), 99–108. https://doi.org/10.1097/01.phh.0000311886.98627.b7 Dearing, J. W. (2009). Applying diffusion of innovation theory to intervention development. Research on Social Work Practice, 19(5), 503–518. Dearing, J.W., Maibach, E.W., & Buller, D.B. (2006). A convergent diffusion and social marketing approach for disseminating proven approaches to physical activity promotion. American Journal of Preventive Medicine, 31(4S), S11–S23. Dearing, J.W., Smith, D.K., Larson, R.S., & Estabrooks, C.A. (2013). Designing for diffusion of a biomedical intervention. American Journal of Preventive Medicine, 44(1S2), S70–S76. Eagly, A.H., & Chaiken, S. (1993). The psychology of attitudes. San Diego, CA: Harcourt Brace Glynn, C. J., Huge, M. E., & Lunney, C. A. (2009). The influence of perceived social norms on college students’ intention to vote. Political Communication, 26, 48–64. https://doi. org/10.1080/10584600802622860 Hitt, R., Perrault, E., Smiths, S., Keating, D., Nazione, S., Silk, K., & Russell, J.(2015). Scientific message translation and the heuristic systematic model: Insights for designing educational messages about progesterone and breast cancer risks. Journal Cancer Education, 1–8. Hogan, T.P., & Brashers, D.E. (2009). The theory of communication and uncertainty management: Implication from the wider realm of information behavior. In T.D. Afifi & W.A. Afifi (Eds.), Uncertainty, information management, and disclosure decisions: Theories and applications. NewYork: Routledge. Johnson, B.T., & Eagly, A.H. (1989). The effects of involvement on persuasion: A meta-analysis. Psychological Bulletin, 106, 290–314. Knapp, M. L., Stohl, C., & Reardon, K. K. (1981). “Memorable” messages. Journal of Communication, 31, 27–41. Lapinski, M.K., Rimal, R.N., DeVries, R., & Lee, E.L. (2007). The role of group orientation and descriptive norms on water conservation attitudes and behaviors. Health Communication Theory, 15, 127–147. Lapinski, M.K., Anderson, J., Shugart, A., & Rodd, E. (2013). Social influence in childcare centers: A test of the theory of normative social behavior. Health Communication, 29(3), 219–232. Lapinski, M. K., Zhuang, J., Koh, H., & Shi, J. (2015). Descriptive norms and involvement in health and environmental behaviors. Communication Research, 44(3), 367–387. https://doi. org/10.1177/0093650215605153 Leventhal, H. (1971). Fear appeals and persuasion: the differentiation of a motivational construct. American Journal of Public Health, 61(6), 1208–1224. https://doi.org/10.2105/ajph.61.6.1208 Louis, W., Davies, S., Smith, J., & Terry, D. (2007). Pizza and pop and the student identity: The role of referent group norms in healthy and unhealthy eating. Journal of Social Psychology, 147, 57–74. https://doi.org/10.3200/socp.147.1.57-74 Maloney, E.K., Lapinski, M.K., & Witte, K. (2011). Fear appeals and persuasion: A review and update of the Extended Parallel Process Model. Social & Personality Psychology Compass, 5, 206–219. https://doi.org/10.1111/j.1751-9004.2011.00341. Nabi, R.L., & Moyer-Gusé, E. (2013). The psychology underlying media-based persuasion. In K. E. Dill (Ed.), The Oxford handbook of media psychology. New York: Oxford University Press. Neuberger, L., Silk, K.J., Yun, D., Bowman, N.D., & Anderson, J.(2011). Concern as motivation for protection: Identifying mothers’ concerns about their daughters’ breast cancer risk. Journal of Health Communication, 16, 1055–1071. Parrott, R.L. (2018). The Oxford encyclopedia of health and risk message design and processing (Vol. 1–4). NewYork: Oxford University Press. Rah, J. H., Hasler, C. M., Painter, J. E., & Chapman-Novakofski, K. M. (2004). Applying the theory of planned behavior to women’s behavioral attitudes on and consumption of soy prod-

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ucts. Journal of Nutrition Education and Behavior, 36(5), 238–244. https://doi.org/10.1016/ s1499-4046(06)60386-2 Reno, R.R., Cialdini, R.B., & Kallgren, C.A. (1993). The transsituational influence of social norms. Journal of Personality & Social Psychology, 64, 104–112. Rogers, E.M. (1995). Diffusion of innovations (5th ed.). NewYork: Free Press. Rogers, E.M. (2003). Diffusion of innovations (5th ed.). NewYork, NY: Free Press. Rimal, R.N., & Real, K. (2005). How behaviors are influenced by perceived norms: A test of the theory of normative social behavior. Communication Research, 32(3), 389-414. https://doi. org/10.1177/0093650205275385 Rimal, R.N. (2008). Modeling the relationship between descriptive norms and behaviors: A test and extension of the theory of normative social behavior (TNSB). Health Communication, 23, 103–116.https://doi.org/10.1080/10410230801967791 Rimal, R. N., Lapinski, M. K., Turner, M. M., & Smith, K. S. (2011). The attribute-centered approach for understanding health behaviors: How perceived benefits and similarity moderate the impact of descriptive norms on behaviors. Journal of Health Communication, 10, 433–450. https://doi.org/10.1080/10810730591009880 Silk, K.J., Bigsby, E., Volkman, J., Kingsley, C., Atkin, C.K., Ferrara, M., & Goins, L.A. (2006). Formative research on adolescent and adult risk perceptions for breast cancer. Social Science and Medicine, 63, 3124–3136. Silk, K. J., Perrault, E. K., Neuberger, L., Rogers, A., Atkin, C., Barlow, J., & Duncan, D. M. (2014). Translating and testing breast cancer risk reduction messages for mothers of adolescent girls. Journal of Health Communication, 19, 226–243. Smith, S.W., & Ellis, J.B. (2001). Memorable messages as guides to self-assessment of behavior: An initial investigation. Communication Monographs, 68, 154–168. Smith, S.W., Atkin, C.K., Munday, S., Skubisz, C., & Stohl, C. (2009a). The impact of personal and/or close relationship experience on memorable messages about breast cancer and the perceived speech acts of the sender. Journal of Cancer Education, 24, 129–134. Smith, S.W., Munday, S., LaPlante, C., Kotowski, M.R., Atkin, C.K., Skubisz, C., & Stohl, C. (2009b). Topics and sources of memorable breast cancer messages: Their impact on prevention and detection behaviors. Journal of Health Communication, 14, 293–307. Smith, S.W., Hamel, L.M., Kotowski, M.R., Nazione, S., LaPlante, C., Atkin, C.K., Stohl, C., & Skubisz, C. (2010). Action tendency emotions associated with memorable breast cancer messages and prevention and detection behaviors. Health Communication, 25, 737–746. Smith, S.W., Clark-Hitt, R., Nazione, S., Russell, J., Silk, K., & Atkin, C.K. (2013). The effects of motivation, ability, and heuristic cues on systematic processing of information about breast cancer environmental factors. Journal of Health Communication, 7, 845–865. Smith, S.W., Hitt, R., Russell, J., Nazione, S., Silk, K., Atkin, C.K., & Keating, D. (2017). Risk belief and attitude formation from translated scientific messages about PFOA, an environmental risk associated with breast Cancer. Health Communication, 32(3), 279–287. https://doi.org /10.1080/10410236.2016.1138350. Studlar, D. T. (1999). Diffusion of tobacco control in North America. Annals of the American Academy of Political and Social Science, 566, 68–79. Torres, R.Y., & Marks, R. (2009). Relationships among health literacy, knowledge about hormone therapy, self-efficacy, and decision-making among postmenopausal health. Journal of Health Communication, 14(1), 43–55. https://doi.org/10.1080/10810730802592247. Totzkay, D., Walling, B., Silk, K.J., Smith, S.W., Jackson, M., Jang, Y., & Park, S. (2017). Content analysis of breast cancer websites for information on environmental risks. Poster presented at the 4th Biennial D.C. Health Communication Conference. Volkman, J., & Silk, K.J. (2008). Adolescent females and their mothers: Examining perceptions of the environment and breast cancer. Journal of Health Psychology, 13(8), 1180–1189 (ISI: 3.87). Wejnert, B. (2002). Integrating models of diffusion of innovations: A conceptual framework. Annual Review of Sociology, 28, 297–326.

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Whitten, P., Munday, S., LaPlante, C., & Smith, S.W. (2008). Communication assessment of the most frequented breast cancer websites: Evaluation of design and theoretical criteria. Journal of Computer-Mediated Communication, 13, 880–911. Whitten, P., Nazione, S.A., Smith, S., & LaPlante, C.K. (2011). An examination into audience targeting and the use of storytelling or statistical evidence on breast cancer websites. Patient Education and Counseling, 85, e59–e64. Wilder, D.A. (1990). Some determinants of the persuasive power of in-groups and out-groups: Organization of information and attributions of independence. Journal of Personality and Social Psychology, 59, 1202–1213. Witte, K. (1992). Putting the fear back into fear appeals: The extended parallel process model. Communication Monographs, 59, 239–349. https://doi.org/10.1080/03637759209376276 Yun, D., Silk, K., Bowman, N., Neuberger, L., & Atkin, C. (2009). Mothers’ intentions to teach adolescent daughters about breast cancer risk reduction activities: The influence of self- efficacy, response efficacy, & personal responsibility. Communication Research Reports, 26(2), 134–145. Zuckerman, A., & Chaiken, S. (1998). A heuristic-systematic processing analysis of the effectiveness of product warning labels. Psychology & Marketing (1986–1998), 15(7), 621–642. https:// doi.org/10.1002/(SICI)1520-6793(199810)15:7 3.0.CO;2-H

Part II

Raising EHL in the Research Context among Diverse Audiences

Chapter 4

Engaging withEthnically Diverse CommunityGroups MonicaRamirez-Andreotta

Abstract Research has shown that in order to successfully address environmental health disparities, environmental health literacy (EHL) efforts need to be informed by the ethnically diverse communities they aim to serve. Understanding a community’s perspectives and informational needs is crucial to conducting and improving environmental health research and EHL initiatives. Socioeconomic variables, linguistic isolation, and measures of political engagement are just some of the factors that effect the spatial distribution of environmental hazards. These variables create additional engagement and educational challenges that need that to be addressed. Efforts to engage ethnically diverse community groups should be rooted in environmental justice, ecosocial theory, self-efficacy building, and empowerment education. Methods that can be used to effectively raise EHL among ethnically diverse community groups include: informal science education, community-based participatory research, public participation in scientific research, traditional ecological knowledge, knowledge mediators, tailored and linguistically appropriate messaging, information design, and cultural models of risk communication. At end of this chapter, research examples are provided highlighting the variety of creative and transformative methods that can be applied to increase EHL in culturally diverse community groups. Keywords Environmental justice · Ecosocial theory · Self-efficacy building · Empowerment education · Informal science education · Community-based participatory research · Citizen science · Traditional ecological knowledge · Knowledge mediators · Culturally-tailored messaging

M. Ramirez-Andreotta (*) Department of Soil, Water and Environmental Science, College of Agriculture and Life Sciences, Tucson, AZ, USA e-mail: [emailprotected] © The Author(s) 2019 S. Finn, L. R. O’Fallon (eds.), Environmental Health Literacy, https://doi.org/10.1007/978-3-319-94108-0_4

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Background To date, scholars have defined literacy in terms of science (National Research Council 1996a), health (Institute of Medicine 2004), critical health (Chinn 2011), public health (Gazmararian et al. 2005), and the environment (North American Association for Environmental Education 2015). Recently, efforts have sought to merge existing explanations and define EHL.Building on the definition proposed by the Society for Public Health Education, Finn and O’Fallon (2017) have defined EHL as “raising scientific literacy, environmental literacy, and numeracy among the general public while increasing awareness of specific exposures and their potential health effects”. EHL efforts have spanned the fields of risk communication, education, and health literacy and at its core, is an understanding of the connection between environmental exposures and human health (Finn and O’Fallon 2017). However, health literacy efforts traditionally assess basic literacy skills such as reading, writing, and arithmetic, and are geared toward compliance with recommended clinical care. Though the aforementioned skills are critical, EHL should be viewed as a form of health action (personal, social, environmental) and focus on individual and/or community efforts regarding knowledge integration, informed choices, actions to improve personal and community health, and methods to reduce risk (Ramirez-Andreotta et al., 2016b, c). EHL efforts aim to educate communities and individuals about the connection between environmental exposures and human health. These efforts can range from informational materials explaining a specific contaminant and how it may affect an individual’s health, local water and fish advisories, community mapping, and biomonitoring/exposure assessment data report back. Unfortunately, environmental health disparities exist in our society and there are differences in health outcomes that are closely linked with disproportionate exposure to toxic substances and social, economic and environmental disadvantage (National Institute of Environmental Health Sciences 2015). Environmental factors such as air, water, soil, and food are fundamental determinants of our health and well-being. Just like access to green space and high-quality foods can improve human health, environmental factors can also lead to disease and health disparities when the environments where people live, work, learn and play are toxic, burdened by chemicals, and social inequities. These health inequalities are considered unnecessary, avoidable and unfair/unjust (Commission on Social Determinants of Health, World Health Organization 2008). Research has shown that to address environmental health disparities, EHL efforts need to be informed by the ethnically diverse communities they aim to serve. This research has confirmed that understanding a community’s perspectives and informational needs is crucial to conducting and improving environmental health research and EHL initiatives, especially in the context of contaminated sites. Across America, one in four Americans lives within 3 miles of a hazardous waste site (U.S.General Accounting Office 2013), meaning that one’s zip code can be more important than their genetic code in terms of disease risks (Graham 2016).

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Socioeconomic variables, along with others such as linguistic isolation and measures of political engagement, are additional factors in the spatial distribution of environmental hazards and these variables further exacerbate community engagement and education efforts. In this chapter, the emphasis is on the importance of culture in the context of EHL. As effective research to reduce environmental health disparities have demonstrated, EHL efforts need to be informed by the ethnically diverse communities they aim to serve in order to be sustainable. One cannot attempt to promote or increase EHL without a manifold understanding of: (1) the culture, (2) local socioeconomic context and environmental exposures within the community and (3) individual health factors and susceptibility. Raising EHL in culturally diverse groups requires listening, culturally sensitive strategies and inclusion efforts. Promoting EHL in diverse communities is also an opportunity to increase educational efforts in vulnerable communities and build the self-efficacy of community members. Raising EHL in these diverse communities can increase their knowledge, skills, and evidence to address environmental injustices that lead to the health disparities one sees today (Finn and O’Fallon 2017).

Environmental Justice Understanding the cultural, socioeconomic and environmental factors underlying environmental health disparities led to the birth of environmental justice (EJ), which is defined by the US EPA as: “the fair treatment and meaningful involvement of all people regardless of race, color, national origin, or income with respect to the development, implementation, and enforcement of environmental laws, regulations, and policies” (EPA 2016). With roots in the civil rights movement, the EJ movement emerged from local communities’ struggles with toxic contamination in the U.S.Advocacy and protests in Warren County, North Carolina about local exposures of concern, and in other areas in the 1970s–1980s were pioneering efforts. Shortly after, definitive studies emerged demonstrating the link between minority status, low socioeconomic status, and community proximity to toxic landfills (United Church of Christ 1987). The current literature on EJ comprises a wide range of quantitative studies consistently concluding that environmental risk burdens, known or potential, are distributed inequitably across racial/ethnic minorities and individuals with lower socioeconomic status (Bullard and Johnson 2000; Chakraborty etal. 2014). Lack of privilege, limited political influence, and linguistic isolation also play a role in environmental injustice (Brown 1995). Class differences, health (Grineski 2007) and rural health (Hartley 2004) disparities, as well as information disparities (Emmett and Desai 2010) also need to be considered. To improve understanding of the convergence of contaminant exposures and sociodemographic information, the United States Environmental Protection Agency (U.S. EPA) developed EJSCREEN, “an environmental justice mapping and screening tool that provides EPA with a nationally consistent dataset and approach

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for combining environmental and demographic indicators” (USEPA 2016). The EJSCREEN includes: 11 environmental indicators, six demographic indicators, and 12 EJ indexes. This mapping and screening tool helps individuals, communities, public health officials, health care providers, regulators and policymakers to visualize the environmental and demographic data that can inform their efforts. For example, using the EJSCREEN, a U.S.EPA Community Involvement Coordinator and/or a Project Manager can visualize the demographic characteristics in a community (e.g. percent low-income, minority, linguistic isolation) or map the EJ indexes, which combines the environmental and demographic information to determine whether the community in which they work is struggling to achieve EJ.This mapping and screening tool promotes EHL by visualizing the following environmental indicators, along with demographic data: • • • • • • • •

National-Scale Air Toxics Assessment (NATA) air toxics cancer risk NATA respiratory hazard index NATA diesel PM Particulate matter Ozone Traffic proximity and volume Lead paint indicator Proximity to Risk Management Plan sites (places where there is potential for a chemical accident) • Proximity to Treatment Storage and Disposal Facilities (TSDFs) • Proximity to National Priorities List (Superfund, hazardous waste) sites • Wastewater Dischargers Indicator (Stream Proximity and Toxic Concentration) As illustrated by the EJ SCREEN and the publications cited above, in the United States, people of color, low-income communities, and tribal populations have been, and continue to be, disproportionately exposed to environmental conditions that can harm their health. EJ SCREEN is one way to visualize sources of pollution and who may be impacted. Recalling sources of pollution and then comprehending what environmental factors influence health are just the first steps in addressing these disproportionate exposures and adverse health outcomes. For, becoming more literate about environmental health issues is an evolutionary process (Finn and O’Fallon 2017). To improve the protection and health of these ethnically diverse communities it is important for these communities to evolve in their understanding and to be able to apply and analyze this knowledge to then synthesize, create, and evaluate new forms of EHL knowledge. In order to evaluate and create new forms of knowledge that would be relevant and useful for specific communities, ethnically diverse community members and practitioners need to work together and incorporate local knowledge and cultural understanding of how the environment affects their health. Given the importance of culturally relevant knowledge creation, the theoretical frameworks listed below are critical to EHL.

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Theoretical Frameworks These frameworks were selected because they can increase access and inclusion and build human capacity, which are critical to EHL. This discussion begins at the intrapersonal level, meaning an individual’s sense of self-efficacy as well as knowledge, attitude, and skills of the individual. Motivation and sense of control are at the core of self-efficacy and these factors affect health and environmental health literacy.

A Community’s Ecology andEcosocial Theory Understanding a community’s ecology is essential and the first step when engaging ethnically diverse community groups in EHL efforts. A community’s ecology includes: ethnicity, language, culture, and economics; essentially all factors that influence how health disparities develop and how solutions can be applied (Caron and Serrell 2010; Kreuter etal. 2004). A community’s ecology can be taken further and to include ecosocial theory. As stated by Krieger “Ecosocial theory is an emerging multilevel theory of disease distribution that seeks to integrate social and biologic reasoning, along with a dynamic, historical, and ecological perspective, to address population distributions of disease and social inequalities in health”. First proposed by Krieger in 1994, ecosocial theory asks the question: Who and what drives current and changing patterns of social inequalities in health? To adequately reach diverse populations and increase EHL, and ecosocial theory needs to be considered because if one does not have a firm understanding of the demographics, ecology, or nuances/ idiosyncrasies of the affected community, EHL efforts will miss the mark. EHL efforts can range from developing a factsheet for a community living near a contaminated site, setting up a public meeting, organizing a series of science cafes or seminars on an environmental health topic, teaching families how to use environmental monitoring tools, to developing an 8th grade classroom curriculum. If these methods for raising EHL are not culturally grounded, researchers might present information in the wrong language, set-up community gatherings at times families work, select a venue for a seminar that community members avoid or is too far away from their home. Conversely, researchers may propose a behavioral change that may reduce exposure to a contaminant, but completely dismiss a prominent cultural practice. This has been the case with some fish advisories. For example, members of the Akwesasne Mohawk community were told to reduce their fish consumption because of high levels of contaminants, which in turn had unintended health and cultural consequences (Hoover 2013), which diminished EHL efforts. Another example relates to EHL efforts with agricultural farmworkers who are told to report potential pesticide poisonings and go to the doctor. This is unreasonable advice when 70% of the agricultural-worker population do not have health insurance

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(National Center for Farmworker Health 1999), exposures may be mistaken for flu, and/or because workers may fear losing their jobs if they report work related poisonings. Utilizing this theoretical framework promotes an understanding of “the combined impact of societal determinants of health, both social and physical, at multiple levels and scales, [which] explicitly recognizes that scientific knowledge and hypotheses are socially situated, and that insights and experiences of affected communities along with the ideas of researchers, past and present, are germane to fruitful scientific inquiry and public health practice” (Krieger 2004). The eco-social context needs to be considered to implement effective EHL with long-term effects, especially in environmental health research because learning and becoming literate in EH, or any topic, requires the educator to understand the social context and constructs in which they target audience lives and operates.

Self-Efficacy Self-efficacy is defined as the as the confidence and ability to have control over one’s own life (Janz etal. 2002) or “as an individual’s belief (or confidence) about his or her abilities to mobilize motivation, cognitive resources, and course of action needed to successfully execute a specific task within a given context’ (Bandura 1997). EHL efforts to engage ethnically diverse community groups needs to begin with self-efficacy because if an individual does not feel as though they have control over their life or experiences, they will not be able to take part in an evolutionary learning process such as the measurable stages of learning described in Bloom’s Taxonomy of Educational Objectives (Finn and O’Fallon 2017; Bloom 1956). If an individual is confident and believes that they have control over their lives, they are said to have high self-efficacy. An individual who feels that they have no control over their lives and that their life is subject to chance or external forces is said to have low self-efficacy. If one applies the self-efficacy concept to environmental health literacy efforts, one can expect that in general people will be more likely to understand their risk, adopt healthy behaviors and support efforts to mitigate environmental exposures if they are confident in their ability to do so. Meaning, there is a connection between increased EHL and increased self-efficacy. Valuing health, along with self-control over health, is noted as an indicator of preventative health behaviors (Lau etal. 1986). Establishing efficacy is therefore an important step in determining whether the targeted population will value the public health intervention and increase their EHL.In general, ethnically diverse communities are not “privileged” or granted membership in one or more dominant social identity groups. This lack of privilege, along with the associated class ranking (e.g. lower ranking people have fewer resources and opportunities than those of relatively higher rank), creates a low sense of self-efficacy. Because of this, it is suggested that increases in self-efficacy makes an important contribution to environmental health literacy, particularly among ethnically diverse individuals. Later in this chapter,

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methods in which to increase self-efficacy will be presented, such as peer-education and participatory approaches. While a sense of control and confidence is important, one must also consider the factors that motivate individuals to engage in acts of environmental public health prevention and interventions. As stated above, valuing health can be a predictor of preventative health behaviors. If there is a general sense of value, then an individual may be more motivated to take on, or incorporate environmental health interventions and prevention strategies. This motivation and level of engagement is relevant to EHL efforts because they indicate recognition, comprehension, and application of EH principles. In general, residents of environmentally compromised communities typically want additional information regarding their environmental health. When working with communities neighboring hazardous waste sites or living in environmentally compromised spaces, individuals are intrinsically motivated to understand their environment and how it may affect their health, hence an increased literacy. For example, these communities want more information about how contaminants are transported through water, soil and air, how to assess the amounts of toxics they are exposed to, and what is the relation between their exposure and their risk of disease (Ramirez-Andreotta etal. 2016a, b). Concerned community members often learn about health-related topics via informal settings and engage in free choice learning (Dickerson et al. 2004). Importantly, such learning is personal, contextualized, correlated with individual interests and motivation (Falk etal. 2007; NRC 2009) and takes time (Rennie and Johnston 2004). Through this inquiry, they advance their EHL, by (1) seeking out, comprehending, and evaluating environmental health information; (2) using environmental health information to make informed choices and reduce health risks; and (3) improving quality of life and protecting the environment (Finn and O’Fallon 2017). For example, interviews conducted with parents living near an abandoned mining site who had participated in the University of Arizona’s Metals Exposure Study in Homes (a children’s biomonitoring study) revealed that families used the data to cope with their challenging circ*mstances, the majority of participants described changing their families’ household behaviors, and participants reported specific interventions to reduce family exposures (Ramirez-Andreotta etal. 2016a, b). The strength of this study is that it provided insight into what people learn and gain from such results communication efforts, what participants want to know, and what type of additional information participants need to advance their environmental health literacy. Participants also reported actions and interventions to reduce their child’s exposure, suggested news ways in which to communicate results to participants, and asked new research questions– demonstrating their learning is evolving.

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Popular or Empowerment Education Popular education is the empowerment of citizens through direct dialogue, knowledge acquirement, and engaged participation to resolve a problem. This approach captures the spirit of Paulo Freire. Freirian theory and practice recognizes that individuals are the subjects of their own learning and not just “empty vessels” to be filled with knowledge generated by experts. Popular education can serve as a powerful vehicle for increasing EHL efforts because this theoretical framework calls for action beyond knowledge recognition and comprehension and strongly encourages participation in the solution-generating dialogue, which can propel learners to the analysis, synthesis, and evaluation stages of learning. Freire stressed that individuals should not only be involved in the efforts to identify their problems, using a listening–dialogue–action approach, but also be “… engaged in the conscientization to analyze the societal context for these problems” (Minkler and Wallerstein 2008). In order to stimulate change and sustain literacy efforts, the targeted individuals and groups must be part of the problem-solving dialogue. Recently, in a citizen science program coupled with a peer education model, researchers observed significant increases in self-efficacy for doing science and for environmental actions related to environmental resiliency and climate adaptation among minorities (Sandhaus et al. 2018), see below under Methods).

Methods Rooted in the aforementioned theoretical frameworks, the methods below can be used to raise EHL among ethnically diverse community groups. This section will highlight an approach/method, followed by a research/outreach example (Fig.4.1).

Free-Choice Learning andInformal Science Education Free-choice learning is about deciding what, where and how one wants to learn over the course of a lifetime. It’s self-motivated learning that takes place all the time, outside of a classroom setting. Informal science education (ISE) are science learning opportunities that people experience across their lifespan outside of school (Bonney et al. 2009; NRC 2009). Concerned community members often engage in free choice learning and informal education to learn about health-related topics (i.e., Dickerson et al. 2004). These learning approaches are personal, contextualized, correlated with individual interests and motivation (Falk etal. 2007; NRC 2009) and take time (Rennie and Johnston 2004). Free-choice learning and ISE are vital to EHL because, as noted earlier, people have a greater motivation to engage and learn

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Fig. 4.1 Engaging ethnically diverse community groups in environmental health literacy efforts (Israel etal. 1998; Pandya 2012; Brody etal. 2014; Ramirez- Andreotta etal. 2015). Atthe core, is a solid understanding of a community ecology environ-socio-cultural contexts and efforts to build individual’s self-efficacy)

when the subject matter is directly related to their lives, and if the learning process is interactive (Falk etal. 2007). In the context of communities impacted by hazardous waste, environmental health literacy efforts are of great value (1) if they help communities make informed choices to reduce hazardous exposures and (2) if these efforts draw upon local knowledge (Corburn 2005). It has been established that individuals living near contamination are motivated to engage in environmental health research and work with outside partners, such as public health officials and researchers (e.g., Brown 1995). However, what is missing from the traditional community involvement programs are efforts to cultivate ISE learning opportunities via public participation in environmental research and risk assessment projects (Ramirez-Andreotta etal. 2014).

Community-Based Participatory Research Community-based participatory research (CBPR) principles ensure that knowledge generation is combined with taking action. CBPR projects share many of the core principles and characteristics of participatory action research and popular education, are community driven, and foster co-learning experiences for researchers and community members [Minkler and Wallerstein 2008]. CBPR is an approach to research that shares power with community partners in all aspects of the scientific process to inform public health interventions, improve decision making, and/or

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stimulate action and policy changes [Minkler and Wallerstein 2008], intentionally crossing research and advocacy boundaries to successfully address complex environmental health challenges [Brown 2013]. Scientific data can be a boundary object; information that may be used in different ways, but is durable enough to maintain its identity even when it intersects various social worlds [Star and Griesemer 1989]. The data itself can be used by a scientist to support a hypothesis and also be used by communities to inform environmental policy reform and intervention [Brown 2013]. In this sense, science can be responsive to community needs, practical, and applied while following the robust principles of the scientific method. Although in practice it might be challenging to include community partners in all stages of the research, it is fundamental that community members are given the opportunity to help shape the research questions and interpret the findings [Green and Mercer 2001]. Ideally, CBPR allows for all partners in the research process to be equally involved, and the unique strengths that each partner brings to the project are recognized and appreciated (e.g. Minkler and Wallerstein 2008; O'Fallon and Dearry 2002; Israel etal. 1998). In recent years, community academic partnerships using a CBPR approach have played an increasingly important role in the area of environmental justice (e.g. Brown etal. 2012; Cohen etal. 2012).

Public Participation inScientific Research Public participation in scientific research (PPSR), which includes citizen science, is a form of ISE, and is broadly defined as “…intentional collaborations in which members of the public engage in the process of research to generate new science- based knowledge” (Bonney et al. 2009). PPSR or citizen science projects are primarily being organized as a means to collect field data, to monitor a variety of environmental conditions and to increase a participant’s scientific literacy (Bonney et al. 2009), to (Sibertown 2009). Public participation in scientific research lies along a spectrum that ranges from scientist-driven (conventional) research projects with moderate community engagement to ‘crowd-sourcing’ initiatives that depend on wide networks of CS members to collect data (e.g. GLOBE at Night, BudBurst, The Cornell Lab of Ornithology’s NestWatch, FeederWatch, and Backyard Bird Count), to ‘co-created’ projects that are community-driven and formulated to support capacity that directly addresses their own research needs (e.g. Gardenroots, Public Lab). CS projects can be divided into five categories that differ by level of public participation: contractual, contributory, collaborative, co-created, and collegial. PPSR and CS efforts provide excellent and exciting opportunities to engage ethnically diverse community groups because these approaches to research democratize the research method. PPSR and CS can broaden and deepen engagement of underrepresented communities in science and increase EHL among these populations because it present opportunities for community members to partner and work together throughout the scientific method and solution generating processes.

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Experience and scientific research dedicated to environmental justice and action has shown that the questions asked, partnership type, and research approach used are important elements in research in ethnically diverse community groups. Asking questions that fail to address community concerns and using methods that dismiss public participation can perpetuate the environmental health literacy knowledge gap and separation between professional scientists and members of the public, especially those who are disenfranchised (Soleri et al. 2016; Pandya 2012; Ottinger 2010). For environmental health efforts to be successful in underserved minority populations, they need to address community identified priorities, align with community values, and build trust (i.e. a targeted community needs to have confidence in the institution that is conducting the study). Approaches to environmental health literacy efforts need to move beyond a narrow scientific focus, and adopt a systemsthinking approach (Seiffert and Loch 2005). When a systems-thinking approach is applied, the work can successful integrate social and ethical considerations with EHL efforts (Levine etal. 2009).

Traditional Ecological Knowledge TEK is an important form of research and knowledge generation and can be defined “as subset of traditional knowledge maintained by Indigenous nations about the relationships between people and the natural environment…preserved though oral tradition and through cultural expressions such as arts, crafts, and ceremonies and the cultivation, collection, and preparation of traditional foods (Finn etal. 2017). Others have further described TEK as resembling adaptive management practices of ecological resources (Berkes et al. 2000). When comparing western scientific approaches to TEK, there are similarities in that they both aim to understand the world around them, evolve as new information is available, and are dynamic processes (Finn et al. 2017). While a western scientific approach utilizes a reductionist approach and seeks to build a collection of knowledge that tends to be discipline-specific, TEK uses an approach that resembles system-thinking (Seiffert and Loch 2005) and embraces the interconnectedness among humans and the environment. When working with indigenous communities one needs to acknowledge, value, and honor TEK and other forms of knowledge generation because one cannot separate, or exclude the additional components of of environmental health, as understood in these communities, such as social dimensions. For, similar to CBPR and PPSR, TEK is an approach to research that can help foster community-professional partnerships and ensure community identified research needs guide research and EHL efforts. Researchers and government agencies have already recognized how TEK can improve resource management and conservation efforts at site-specific locations (Alcorn 1989). TEK can be viewed as a Tribal form of citizen science, a vehicle for capturing environmental exposure and health, with the exception that the conduct of research is not solely to generate new knowledge and literacy, it is about valuing the data and

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equally acknowledging local ecological knowledge in environmental health research decision-making (Finn et al. 2017). In this instance, working with Tribal and indigenous communities benefit from aTribal form of citizen science, respect for TEK, and a CBPR approach to research (see this section above under “Methods”).

Knowledge Mediators Knowledgeable mediators are individuals who serve as the broker, interpreter and/ or translator of information between individuals in the targeted population and the persons and organizations outside of the targeted community (May et al. 2003). Individuals serving in the role of a knowledge mediator not only utilize knowledge provided by the community and translate it with service providers; they utilize the knowledge of the service providers and translate it with community residents. These individuals have dual competency, which includes a capacity for understanding as well as communicating inlocally appropriate ways (May etal. 2002)! They share similar social backgrounds or life experiences and are socially accepted by the targeted community. Because they are indigenous to the targeted community, they can effectively reach, teach and/or sharing information with their peers. These individuals can be considered gatekeepers for hard to reach populations and are critical for EHL efforts because the community will listen to them! Knowledge mediators go by different terms. To name a few, they include: promotoras, community health workers, and health educators. In Hispanic communities, the term promotora is used and traditionally refers to a female, Hispanic community member who has leadership qualities that allow her to effectively promote a particular issue in her indigenous community. May et al. (2003) identified five general domains of practice of promotoras: information and referral, education, emotional support, community and capacity building, and advocacy. The community health worker model has been implemented for decades to address public health disparities in communities (Hunter etal. 2004) and has been leveraged to address pollution prevention efforts. In the Body and Soul project, Boston Safe Shop Model and the Arizona-Sonora Border Pollution Prevention program (see Section “Knowledge Mediators – Demographic: Urban, Mexican/ Mexican American” below), culturally and linguistically appropriate technical assistance informed hard-to-reach small businesses to improve their practices to reduce occupational and community exposures (Moreno Ramirez et al. 2015; Roelofs etal. 2010). In general, knowledge mediators bridge communities in two ways: horizontally, by facilitating social networks within the community, and vertically, by connecting targeted residents with researchers or critical services from outside the community (May etal. 2003). These “bridging acts” are critical for EHL because they connect ethnically diverse community groups with environmental health information to then make informed choices and reduce health risks, improve quality of life, and take steps to protect the environment.

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Tailored and Linguistically Appropriate Messaging Effective communication is vital to EHL efforts. In order to achieve effective communication, it is critical to assess community needs and tailor messages to correspond with a specific audience in an appropriate context (Tushman and Scanlan 1981). Tailored messaging means the communicator recognizes and understands their target audience and then selects the appropriate information transfer mechanism (NRC 2008). Linguistically a ppropriate messaging is knowing the predominant language spoken, the unique dialects spoken in the targeted community and what type of information is desired. For example, a regulatory agency might appreciate an executive summary of the scientific evidence. Conversely, a member of the affected community may prefer information specific to the chemical of concern, the risks they pose, and possible methods to reduce exposure. To select which information-transfer mechanism to use for a targeted community, it is crucial to learn the community’s ecology and the social context in which the environmental contamination and human health risks are embedded (Green etal. 2002; Caron and Serrell 2010). To accomplish this, information transfer from the targeted community to the practitioner (e.g. academic, government agency, community-based organization) should also be occurring in order for the values, knowledge, and opinion of the targeted community to be heard and considered. As described above in section 2.1, by understanding the community’s ecology, one is able to establish and ensure a two-way dialogue with affected communities. Altman etal. (2008) observed that personal and collective environmental history influenced how one interpreted and responded to personal exposure results. This highlights the fact that personal responses to exposure information will vary depending on social and eco-historical experiences of the population.

Data Visualization and Information Design Data visualization is any effort to help people understand the significance of data by placing it in a visual context. Information design is about presenting information in a way that fosters efficient and effective understanding of it. Regardless of audience type, it is important that the information communication mechanism use visual aids and provides sound, unbiased scientific information to inform and build human capacity. People can interpret visuals much faster than words (Covello 2015). This makes data visualizations and information design essential for EHL.Information visuals need to be clear, impactful, meaningful, and demonstrative to various endusers and decision-makers. Design can also affect an individual’s interpretation, uptake of information, and how they see their choices affecting their environment and future (Nicholson-Cole 2005). Since imagery can elicit different responses from people depending on background, previous knowledge, motivations, and personal beliefs, it is critical to engage and learn about one’s targeted audience. It is

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Fig. 4.2 An example of factsheet that balances text and graphicsprepared by Ramirez-Andreotta and Kaufmann (2016). Available at: https://superfund.arizona.edu/ University of Arizona Superfund Research Program. (2018)

also imperative for a science communicator/information designer to ask questions about what kind of images portray the appropriate level of scientific information, how to create an appropriate visual representation of the information, and audience perception (Nicholson-Cole 2005) (Fig.4.2). For example, an infographic, or information graphic, is a self-contained, pictorial representation of information, knowledge, or data.33 Formally defined as “a visualization of data or ideas that tries to convey complex information to an audience

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Fig. 4.3 An example of a fish advisory sign developed by the Washington State Department of Health (n.d). The text is written in nine different languages. Available at: https://www. doh.wa.gov/Portals/1/ Documents/Pubs/334-330. pdf

in a manner that can be quickly consumed and easily understood,” an effective infographic combines data with design to improve comprehension via visual learning (Cox and Pezzullo 2016). Infographics have been especially useful in public health promotion efforts related to topics as distinct as Ebola awareness and fish advisories. Infographics frequently employ color to convey a sense of risk with red indicating highest risk and green indicating safer levels of exposure (see Fig.4.3).

Technical vs. Cultural Models ofRisk Communication Traditionally, a technical model of risk communication has been employed. This traditional method is solely the translation of technical data (Andrews 2006). It aims to inform, change behavior, and assure populations that the scientifically determined risk is acceptable through a one-way communication (expert →laypeople) (Cox and Pezzullo 2016). Though the goal is to educate a target audience, this one-way communication process has led to clashes between residents and public officials at

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contaminated sites. Such models assume that any failure of technical risk communication is due to public fear, irrationality, and other emotional factors (Cox 2016), completely dismissing the fact that the targeted community did not get to inform or participant in the risk assessment process. Given the limitations of the technical, uni-directional risk communication approach, a cultural model of risk communication should be adopted. A cultural model of risk communication can be defined as a two-way conversation where scientists involve the affected public in assessing their risk (Cox and Pezzullo 2016). Citizen participation in risk communication puts risk into context, makes comparisons with other risks, encourages a dialogue, and involves the affected group in the judgment of acceptable and unacceptable risks (NRC 1996a, b). When working with diverse community groups who are living in environmentally compromised areas or near hazardous waste sites (i.e. National Priorities Listed/ Superfund sites), a cultural model of communication is critical to advance environmental health literacy efforts. For example, community members should be given the opportunity to contribute to the risk analysis, be part of the risk assessment process by learning the meaning and source of each variable, modifying the exposure assessment to fit their site-specific parameters (e.g. exposure duration, exposure frequency, intake rate), and learning how their behavior or a remediation strategy can change their exposure (i.e. “If I drink less water from this source or if the concentration of the contaminant decreases then my daily dose decreases”) (Ramirez-Andreotta etal. 2015, 2016c). When done correctly, a cultural model of risk communication effort can dramatically improve EHL efforts because the community will have applied the environmental health information to understand how their behavior changes or a clean-up strategy reduces their exposure and associated health risks. To implement a cultural model of risk communication collaboration among citizens, experts, and agencies is necessary. Data to inform the risk assessment model is more complete when it stems from and is informed by the targeted communities’ experiences. This approach recognizes the relevant experience of the local community and makes use of this local knowledge in risk studies (Cox and Pezzullo 2016; Corburn 2005; Dewey 1954).

Research Examples Below are examples demonstrating the application of the methods presented above. Each example in this section describes activities designed to raise EHL in a specific culturally diverse community group. These examples showcase a myriad of creative methods and activities that can be applied to increase EHL in culturally diverse community groups. Each example provides practical details on how the environmental health education goal was attained with a targeted culturally diverse community and the researcher’s success in raising EHL.

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isk Communication andBreast Cancer– Demographic: R African American Women This case study highlights the importance of a cultural model of risk communication that provides information that is culturally relevant, appropriate, and accurate. African American women are disproportionately affected by breast cancer and suffer a higher burden of basal-like breast cancers, an aggressive subtype that has no targeted therapy (Allico*ck etal. 2013). Through focus groups, Allico*ck etal. (2013) investigated women’s knowledge, beliefs, and attitudes about breast cancer to learn about risk perceptions. It was observed that “race was a strong thread that influenced how risk was perceived; knowledge, beliefs, and attitudes about breast cancer were shaped by women’s core knowledge about the disease, age perceptions, understanding of cancer causes, and connotations of the disease” (Allico*ck etal. 2013). Participants reported that breast cancer is typically depicted as a white woman disease and that perhaps the lack of visual representation of African Americans in breast cancer information transfer translated to a lowered perceived relevance of the disease, and subsequently risk. Researchers recognized that there may not be one best method to effectively communicate breast cancer risk to African Americans, rather it was critical that the information was targeted to them and came from culturally relevant sources, consistent across sources, and convenient for women to access (Allico*ck etal. 2013). The data collected from this focus group highlights how risk perception can impact one’s understanding of disease and distribution of burden.

Knowledge Mediators– Demographic: Urban, Mexican/ Mexican American This case study highlights the integral role of promotoras in pollution prevention efforts with small and home-based businesses in a predominately Hispanic area of Tucson, Arizona. Using handheld GPS units, promotoras walk neighborhoods to identify high-risk areas based on environmental hazards. The maps indicated a large number of small and home-based businesses in and around the predominately Hispanic neighborhoods. If pollution prevention practices are not applied at these small and home-based businesses, occupational and community exposures to volatile organic compounds (VOCs) can occur. To increase the targeted communities access to pollution prevention (P2) practices, a partnership between promotoras from a non-profit organization, Sonora Environmental Research Institute, Inc. (SERI) and researchers from the University of Arizona (UA) worked together to reach these small and home-based businesses. From 2008 to 2011, a promotora-led P2 program reached a total of 640 small and home-based businesses. P2 Activities included: technical trainings for promotoras and businesses, generation of culturally and linguistically appropriate educational materials, and face-to-face peer

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education via multiple on-site visits. Pre- and post- surveys were administered to measure P2 best practices implemented by businesses and perceptions towards pollution prevention. Two hundred and eight-eight (45%) of the total businesses reported modifying their behavior ranging from recycling to substitution of products; these behavior modifications varied from business to business (Moreno Ramirez etal. 2015). For example, a total of 84 of the 124 nail salons reported they would try acetone-free nail polish remover, which is equivalent to 16,308 kilograms of VOC emissions reduced per year when acetone is replaced with non-acetone nail polish remover. For automotive repair and paint and body shops, 203 businesses reported they began covering solvent degreaser containers when not in use. Covering a cold solvent degreaser and associated drainage facility reduces emissions between 13% and 38%. Using the conservative estimate of 13%, it was calculated that emissions were reduced by 45 kg/year. This gives a reduction in VOC emissions of 763kg/year. One of the 17 shops reported that they switched entirely to an aqueous degreaser reducing a total of 10,886kg of VOC emissions per year at this business (Moreno Ramirez etal. 2015). The outcomes of this project demonstrate the vital role the knowledge mediator played in engaging traditionally hard to reach businesses and how culturally and linguistically appropriate technical assistance reduced occupational and community exposures.

nowledge Mediators– Demographic: Urban, Mixed K Minority Groups Similar to the Tucson Promotora case study described above, the Boston Public Health Commission Safe Shops Project also worked with knowledge mediators to incentivize hard-to-reach small businesses to improve their environmental practices and to become good neighbors in neighborhoods that include a mix of residences and businesses in close proximity. The Safe Shop program also used knowledge mediators who provided culturally and linguistically appropriate technical assistance to raise the level of EHL among small businesses owners. The Safe Shops field staff conducted walk-through assessments, provide training business-specific training sessions that included best practices and technology for worker protection and pollution prevention, and held one-on-one meetings with business owners to develop improvement plans (Roelofs etal. 2010). In addition, they also assessed worker and owner needs for health care, business loan assistance, and child care resources. After a pre- and post-survey with all participating businesses, results revealed that compliance with lab waste area containers increased from 45% of shops to 85%; and that properly labeling waste oil, antifreeze, paints, and solvents increased from 30% to 85% (Roelofs et al. 2010). This project also worked with nail salons technicians; Roelofs et al. (Roelofs et al. 2010) describes noteworthy outcomes while working with these nail technicians, which can be challenging. They examined the products being used in Boston nail salons and then distributed material safety

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datasheets (N=45), trained 30 community health care providers how to recognize work-related health issues for nail technicians, and made 5 salon referrals to a community partner who could provide child care and business development resources (Roelofs etal. 2010). During these efforts, it was observed that the nail technicians believed infection control masks were suitable and effective in reducing their exposure to the chemicals and dust produced during treatments, specifically acrylic nails. The Safe Shops Project educated nail technicians that they should instead be using National Institute of Occupational Safety and Health–approved N95 dust masks with impregnated carbon for low-level solvent control. Nail technicians expressed that they would not use the mask based on appearance. Based on this feedback, the Safe Shops Project identified a seamstress to prepare attractive covers for the N95 masks. The outcomes of this project demonstrate the vital role the knowledge mediator played in improving occupational health by reducing exposures to solvents, facilitating social networks within the community, and by connecting targeted residents with critical services from outside the community like child care and business development resources.

ody andSoul Project (Knowledge Mediators)– B Demographic: Urban, African American This case study highlights the importance of knowledge mediators who attend or work at local churches. Body & Soul is a church-based fruit and vegetable (FV) intake program implemented at churches with predominantly African American membership. Based upon the community’s ecology, the Body & Soul program has four critical components: pastoral involvement, educational activities, church environmental changes, and peer counseling (Allico*ck etal. 2012). Body & Soul is a collaborative effort among the National Cancer Institute, the American Cancer Society (ACS), and two university research groups. In recent studies, the intervention was delivered by volunteer members of African-American churches with less training, monitoring, and support (i.e. real-world conditions) to test whether these local knowledge mediators could be successful in reaching the targeted group as shown in previous studies ran by a trained professional staff (Resnicow etal. 2004). Results of this case-control study revealed that the intervention group consumed significantly more FV at follow-up than the control group, suggesting that the volunteer members of African-American churches can better reach their constituents (Resnicow et al. 2004). The results suggest that research-based interventions, delivered collaboratively by community volunteers and a health-related voluntary agency, can be effectively implemented under real-world conditions. Though this case study is specific to nutritional health, it provides an evidenced-based framework that can be implemented to raise literacy and address environmental health challenges in predominately African-American communities.

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Image 4.1 The abandoned Humboldt smelter nestled in the community of Dewey-Humboldt, Arizona

Citizen Science– Demographic: Rural, Predominately White1 This case study highlights how to implement a co-created citizen science project with a community neighboring a contaminated site. Dewey-Humboldt, Arizona, is a rural community adjacent to the Iron King Mine and Humboldt Smelter Superfund (IKMHSS) site. In August 2008, community members expressed concerns about the site’s impact on their soil at a public meeting. Specifically, they wanted to know if it was safe to consume vegetables from their home gardens, and if so, how much they could eat. In response, a community-academic partnership was formed and together they investigated the uptake of arsenic in commonly-grown vegetables, and evaluated arsenic exposure and potential risk to local vegetable gardeners Ramirez- Andreotta etal. 2013). Because the research question came from community members who then worked alongside the academic investigator throughout most stages of the study, Gardenroots was a co-created citizen science project (Image 4.1). Recruitment for the Gardenroots project was primarily achieved through an announcement in the Dewey-Humboldt town newsletter, through personal interactions at local events, and by community “champions” who initially posed the research question. More than 40 community members signed up to attend a 1.5- hour training session on how to properly collect soil, water, and vegetable samples from their home gardens for laboratory analysis. Participants received a home instructional manual and collection toolkit, and were asked to deliver their samples to the local UA Cooperative Extension office. A series of informal science education experiences were organized throughout the program to maintain participant motivation. The presentation and delivery of study findings at a final report-back gathering was instrumental to ensuring that participants understood the data and could use the information to make decisions. Each participant received a personalized booklet containing their household sampling results, including a chart that illustrated how many cups of vegetables per week an individual could safely eat from their garden (part of text below pulled from https://www.niehs.nih.gov/research/supported/ translational/community/gardenroots/index.cfm (Kerry Mandernach from MDB, Inc. Contractor to NIEHS took lead, Ramirez-Andreotta help write/edit).

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based on different levels of estimated risk. Ramírez-Andreotta led presentations on how to interpret the results, and provided handouts outlining recommended safe gardening practices to help reduce an individual’s arsenic exposure. Outcomes for such citizen science efforts can be analyzed at the programmatic, individual and community level. Below are some noteworthy outcomes: • Programmatic – The Gardenroots project has improved understanding of (1) the uptake of arsenic in common homegrown vegetables grown in soils near a mining site; (2) the amount of arsenic introduced to an individual through ingestion of homegrown vegetables, incidental ingestion of soil, and water, and the potential risks posed by those exposure routes; and (3) how to implement a co-created citizen science project with a community neighboring a hazardous waste site. • Individual – Surveys indicated that most of the participants understood the scientific findings and would continue to eat homegrown vegetables while modifying their gardening practices to reduce their arsenic exposure from water and soil. During the report-back gathering, some participants recalculated their potential exposure and risk by changing the exposure assessment variables, such as the amount or number of days eating a vegetable, to better suit their behavior and way of living. Participants also demonstrated an increased understanding of soil contamination, food quality, and the scientific process by posing additional research questions. For example, they inquired about the quality of chicken eggs, and whether raised-bed building materials like cinder blocks could contribute arsenic to their garden soils. • Community-level – Gardenroots participants increased their community networking in natural resource-related issues such as soil and water quality, and subsequently participated in other natural resource-related projects. They also leveraged the study results to encourage government officials to take action about the contaminated soil and water. The Gardenroots project revealed that water from the local public water system exceeded the U.S. Environmental Protection Agency (EPA) arsenic drinking water standard, prompting participants to work together to notify other households that were connected to the public water supply. They also reported their test results to federal and state environmental agencies, and as a result the municipal water supplier received a notice of violation for exceeding the EPA arsenic drinking water standard. This example highlights how to implement a citizen science project in an underserved community neighboring contaminated sites as well as the various and diverse outcomes that grew out of a participatory approach to research.

Promotora Science (Citizen Science and Knowledge Mediators)– Demographic: Urban, Mexican/Mexican American This example highlights how to combine frameworks and methods, specifically community ecology, knowledge mediators, and citizen science efforts, to increase selfefficacy for environmental action and conducting science in a Mexican/Mexican

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American community. South Tucson metropolitan area is considered an environmental justice community. When compared to the U.S., over 90% of the target area is low income, minority, linguistically isolated, and disproportionately located in proximity to hazardous waste sites, chemical treatment, storage facilities, and high traffic areas. This area also lacks tree canopy, has high surface temperatures, and high heat vulnerability (Pope 2013). Further, the Arizona Department of Health Services has designated the area as medically underserved, nearly 60% of the residents are members of sensitive populations, including both children and the elderly, and according to the U.S.Census Bureau (2010), over 40% of adults lack a high school education, compared to just 15.8% for the entire Tucson area. A partnership between promotoras from the non-profit organization, SERI and researchers from the University of Arizona was formed and in March 2016, a Climate Change Adaptation and Resiliency training was held. This program encompassed all aspects of sustainability and climate change and was informed by the targeted population’s ecological and social context. Promotoras signed up for this program and received a comprehensive training in environmental quality, climate change, and sample collection that was 40h long (5h a day for 2weeks; Monday to Friday). In addition to the topics covered, major highlights of the training include: (1) a five-hour session on how to build a passive rainwater harvesting system and (2) two five-hour sessions on environmental quality and field sampling and laboratory methodologies. During the training, promotoras collected harvested rainwater and soil samples from residents living in southern metropolitan Tucson. Once the samples were collected, the promotoras promptly arrived at the University of Arizona’s Integrated Environmental Science and Health Risk Laboratory to prepare the samples for analysis. In the lab, the promotoras entered their sample identifications (chain of custody) and field notes into a spreadsheet, placed the water samples in the refrigerator, and sieved, weighed out, and dried soil samples. After the training and sample collection, promotoras went out in pairs and conducted home visits (N = 32) to share sustainability and climate change information with families in the targeted area (Image 4.2). Through a mixed-method evaluation approach, data indicated that the designed environmental sustainability and climate change adaptation training was successful in increasing the EHL of the participating promotoras, and that the promotoras themselves were able to go into their communities and effectively educate others on these environmental sustainability practices (Sandhaus et al. 2018). Researchers furthered observed that self-efficacy for environmental action increased across both the promotoras and the home visit participants, while the promotoras gained efficacy in doing science, indicating that a citizen science approach can be an effective tool in science literacy (Sandhaus et al. 2018). This example highlights how the aforementioned frameworks can be combined to create a program that increases EHL across various types of community members (i.e. knowledge mediator and families). Designing a training that was tailored and had linguistically appropriate messaging and combining knowledge mediators with citizen science led to significant increases in self-efficacy for doing science and for environmental actions related to environmental monitoring and climate adaptation among minorities (Sandhaus etal. 2018). As stated in section 2.2, increasing self-efficacy is critical

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Image 4.2 Promotoras prepping soil samples for analysis, March 2016

for EHL because a sense of self-control is noted as an indicator of preventative health behaviors (Lau etal. 1986) (Image 4.3).

PSR/Tribal Citizen Science– Demographic: Rural, Mohawk P Community This example highlights how researchers and members of the Mohawk community worked together using a CBPR and PPSR approach to address polychlorinated biphenyls (PCBs) exposures via local seafood consumption. Akwesasne is a Mohawk community of about 15,000 people. In 1954, the St. Lawrence Seaway was built, which brought development and industry to the area. Years later in 1981, two dormant sludge pits filled with polychlorinated biphenyls (PCBs) were discovered behind a GM plant, adjacent to the Akwesasne community. This site was then placed

M. Ramirez-Andreotta

Image 4.3 Promotoras using weighing out soil subsamples, March 2016

on the US EPA’s National Priorities List in 1984 (US EPA n.d.). In parallel, a local Mohawk midwife, Katsi Cook, invited a Wildlife Epidemiologist to test fish and wildlife in the area; these studies revealed elevated levels of PCBs in duck, s turgeon, and turtle (Hoover 2016). Based on the data and her role in her community as a midwife, Katsi Cook began to set the stage for scientific studies to determine whether the PCB contamination found in their food source was impacting the health of mothers and their infants. Cook ultimately proved to be one of the “champions” who emerged to initiate this participatory approach to research, which she termed “barefoot epidemiology” (Hoover 2016). Using CBPR and PPSR approach, Cook partnered with researchers, under the condition that the researchers would hire and train local residents for the project. Cook ensured that the mothers were co-investigators in the study and she started the “First Environment Research Project” (FERP) as a means of organizing Mohawk women fieldworkers and coordinating the data for the health studies. FERP employees collected blood and breast milk samples, and for some studies conducted cognitive assessments, body measurements, and nutritional surveys (Hoover 2016). Through this community- academic partnership, it was revealed that there as was a connection between the levels of PCBs in participants’ breast milk and blood to fish consumption (Fitzgerald et al. 1998). Though there were reported challenges, the community-academic partnership used CBPR principles to ensure transparency and the sharing of responsibility, decision-making, and data sharing. The CBPR approach and, in particular, the training for local residents increased EHL among the Akwesasne and set the stage for further collaboration to reduce health disparities in the region.

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uture Directions forEngaging Ethnically Diverse F Community Groups In conclusion, for EHL efforts to be successful and sustainable, projects need to consider the community’s ecology, build self-efficacy among and within the culturally diverse community groups, and embrace popular education practices. As this chapter describes, communities, especially those living in close proximity to pollution sources, are intrinsically motivated to learn about and address environmental health issues. Methodologically, this chapter presented a series of approaches to reach and increase EHL among culturally diverse community groups. They include the: • Effectiveness of free-choice learning • Collaborative approaches and shared decision making inherent to projects based on CBPR and PPSR principles • Cultural appropriateness and sensitivity that knowledge mediators bring to projects • Importance of tailored messaging for specific subpopulations • Use of cultural models of risk communication that more readily convey risk in culturally meaningful terms • Advantages that data visualizations and information design entail particularly for low literacy or non-English speaking subpopulations. All of these approaches call for inclusiveness and the democratization of science and all have proven effective for engaging with communities and raising EHL. The field of EHL is emerging and due to the current state of health disparities, reaching culturally diverse community groups is timely and fertile ground. It is therefore appropriate to mention in this chapter that racial minorities comprise about 38% of the US population and this group makes up only 16% of staff and board members of major US environmental NGOs, foundations, and government agencies (Taylor 2014). Those involved in EHL and decision-making ideally need to reflect the diversity of the general and/or affected population; until this occurs, however, the use of knowledge mediators and cultural models of risk communication should be preferred methodologies for addressing health disparities in diverse community groups. In addition, given the disproportionate level of exposures and resulting health disparities among ethnic and racial subpopulations, it is imperative that scientists raise EHL across all populations by working alongside culturally diverse community groups. As illustrated in the examples highlighted above, there are many opportunities for EHL in environmental health public health research and programs. EHL efforts can create substantial change and if done well, can be transformative. Additionally, literacy efforts in environmental public health can potentially help to achieve global health justice. EHL programs are shifting the way scientists and the public think about reducing health disparities. It is time to change the paradigm and the way scientists and culturally diverse communities look at environmental health solutions.

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References Alcorn, J.B. (1989). Process as resource: The traditional agricultural ideology of Bora and Huastec resource management and its implications for research. Advances in Economic Botany, 7, 63–77. Allico*ck, M., Campbell, M. K., Valle, C. G., Carr, C., Resnicow, K., & Gizlice, Z. (2012). Evaluating the dissemination of Body & Soul, an evidence-based fruit and vegetable intake intervention: challenges for dissemination and implementation research. Journal of Nutrition Education and Behavior, 44(6), 530–538. https://doi.org/10.1016/j.jneb.2011.09.002. Allico*ck, M., Graves, N., Gray, K., & Troester, M.A. (2013). African American Women’s perspectives on breast Cancer: Implications for communicating risk of basal-like breast Cancer. Journal of Health Care for the Poor and Underserved, 24(2), 753–767. https://doi.org/10.1353/ hpu.2013.0082. Altman, R. G., Morello-Frosch, R., Brody, J. G., Rudel, R., Brown, P., & Averick, M. (2008). Pollution comes home and gets personal: Women’s experience of household chemical exposure. Journal of Health and Social Behavior, 49(4), 417–435. Andrews, R.N. L. (2006). Managing the environment, managing ourselves: a history of American environmental policy. New Haven: Yale University Press. Bandura, A. (1997). Self-efficacy: The exercise of control. NewYork: Freeman. Berkes, F., Colding, J., & Folke, C. (2000). Rediscovery of traditional ecological knowledge as adaptive management. Ecological Applications, 10(5), 1251–1262. https://doi. org/10.2307/2641280. Bloom, B.S. (1956). Taxonomy of educational objectives: The classification of educational goals (1st ed.). NewYork: Longmans, Green. Bonney, R., Ballard, H., Jordan, R., McCallie, E., Phillips, T., Shirk, J., etal. (2009). Public participation in scientific research: Defining the field and assessing its potential for informal science education. Washington, DC: Center for Advancement of Informal Science Education. Brody, J.G., Dunagan, S.C., Morello-Frosch, R., Brown, P., Patton, S., & Rudel, R.A. (2014). Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies. Environmental Health, 13(1). Brown, P. (1995). Race, class, and environmental health: A review and systematization of the literature. Environmental Research, 69, 15–30. Brown, P. (2013). Integrating medical and environmental sociology with environmental health: Crossing boundaries and building connections through advocacy. Journal of Health and Social Behavior, 54, 144–163. Brown, P., Brody, J. G., Morello-Frosch, R., Tovar, J., Zota, A. R., & Rudel, R. A. (2012). Measuring the success of community science: The Northern California household exposure study. Environmental Health Perspectives, 120, 326–331. Bullard, R., & Johnson, S. (2000). Environmental justice: Grassroots activism and its impact on public policy decision making. Journal of Social Issues, 56, 555–578. Caron, R.M., & Serrell, N. (2010). Community ecology and capacity: Keys to progressing the environmental communication of wicked problems. Applied Environmental Education and Communication, 8, 195–203. Chakraborty, J., Collins, T. W., Grineski, S. E., Montgomery, M. C., & Hernandez, M. (2014). Comparing disproportionate exposure to acute and chronic pollution risks: A case study in Houston, Texas. Risk Analysis, 34, 2005–2020. Chinn, D. (2011). Critical health literacy: A review and critical analysis. Social Science & Medicine, 73(1), 60–67. Cohen, A., Lopez, A., Malloy, N., & Morello-Frosch, R. (2012). Our environment, our health: A community-based participatory environmental health survey in Richmond, California. Health Education & Behavior, 39, 198–209.

4 Engaging withEthnically Diverse Community Groups

Commission on Social Determinants of Health, World Health Organization. (2008). Available at: http://www.who.int/social_determinants/thecommission/finalreport/en/. Accessed on 13 Oct 2017. Corburn, J. (2005). Street science: Community Knowledge and environmental health justice. Cambridge: MIT Press. Covello, V. T. (2015, August). Summary of neuroscience research: 7 implications for effective risk, crisis, and organizational change communications. US Environmental Protection Agency Community Involvement Conference, Atlanta, GA. Cox, R. (2016). Environmental communication and the public sphere. California: Sage Publications. Cox, R., & Pezzullo, P.C. (2016). Environmental communication and the public sphere. Thousand Oaks: SAGE. Dewey, J. (1954). The public and its problems. Chicago: Gateway Books. Dickerson, S., Reinhart, A.M., Feeley, T.H., Bidani, R., Rich, E., Garg, V.K., & Hershey, C.O. (2004). Patient internet use for health information at three urban primary care clinics. Journal of the American Medical Informatics Association, 11(6), 499–504. Emmett, E.A., & Desai, C. (2010). Community first communication: Reversing information disparities to achieve environmental justice. Environmental Justice, 3(3), 79–84. Falk, J.H., Storksdieck, M., & Dierking, L.D. (2007). Investigating public science interest and understanding: Evidence for the importance of free-choice learning. Public Understanding of Science, 16, 455–469. Finn, S., & O’Fallon, L. (2017). The emergence of environmental health literacy—From its roots to its future potential. Environmental Health Perspectives, 125(4), 495–501. https://doi. org/10.1289/ehp.1409337. Finn, S., Herne, M., & Castille, D. (2017). The value of traditional ecological knowledge for the environmental health sciences and biomedical research. Environmental Health Perspectives, 125(8). https://doi.org/10.1289/EHP858. Fish Consumption Advisories. Washington State Department of Health. Available at: https://www. doh.wa.gov/CommunityandEnvironment/Food/Fish/Advisories. Accessed on 17 Oct 2017. Fitzgerald, E.F., Hwang, S.-A., Bush, B., Cook, K., & Worswick, P. (1998). Fish consumption and breast milk PCB concentrations among Mohawk women at Akwesasne. American Journal of Epidemiology, 148(2), 164–172. Gazmararian, J. A., Curran, J. W., Parker, R. M., Bernhardt, J. M., & DeBuono, B. A. (2005). Public health literacy in America. American Journal of Preventive Medicine, 28(3), 317–322. Graham, G. N. (2016). Why your ZIP code matters more than your genetic code: Promoting healthy outcomes from mother to child. Breastfeeding Medicine, 11, 396–397. https://doi. org/10.1089/bfm.2016.0113. Green, L.W., & Mercer, S.L. (2001). Can public health researchers and agencies reconcile the push from funding bodies and the pull from communities? American Journal of Public Health, 91, 1926–1929. Green, L., Fullilove, M., Evans, D., & Shepard, P. (2002). “Hey, mom, thanks!”: Use of focus groups in the development of place-specific materials for a community environmental action campaign. Environmental Health Perspectives, 110(s2), 265–269. Grineski, S. E. (2007). Incorporating health outcomes into environmental justice research: The case of children’s asthma and air pollution in Phoenix, Arizona. Environmental Hazards, 7, 360–371. Hartley, D. (2004). Rural health disparities, population health, and rural culture. American Journal of Public Health, 94, 1675–1678. Hoover, E. (2013). Cultural and health implications of fish advisories in a Native American community. Ecological Processes, 2(1), 4. Hoover, E. (2016). “We’re not going to be Guinea pigs;” Citizen science and environmental health in a native American community. Journal of Science Communication, 15(01), A05. Hunter, J.B., de Zapien, J.G., Papenfuss, M., Fernandez, M.L., Meister, J., & Giuliano, A.R. (2004). The impact of a Promotora on increasing routine chronic disease prevention among

M. Ramirez-Andreotta

women aged 40 and older at the U.S.-Mexico border. Health Education & Behavior, 31, 18S–28S. Institute of Medicine. (2004). Health literacy: A prescription to end confusion. Washington, DC: National Academies Press. Israel, B.A., Schulz, A.J., Parker, E.A., & Becker, A.B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173–202. Janz, N.K., Champoin, V.L., & Strecher, V.J. (2002). The health belief model. In K.Glanz, B.K. Rimer, & F.M. Lewis (Eds.), Health behavior and health education: Theory, research, and practice (3rd ed.). San Francisco: Jossey-Bass. Kreuter, M.W., de Rosa, C., Howze, E.H., & Baldwin, G.T. (2004). Understanding wicked problems: A key to advancing environmental health promotion. Health Education & Behavior, 31, 441–454. Krieger, N. (1994). Epidemiology and the web of causation: Has anyone seen the spider? Social Science and Medicine, 39, 887–903. Krieger, N. (2004). Ecosocial theory. In N.B. Anderson (Ed.), Encyclopedia of health and behavior (pp.293–294). Thousand Oaks: SAGE Publications. https://doi.org/10.4135/9781412952576. n87. Lau, R.R., Hartman, K.A., & Ware, J.E., Jr. (1986). Health as a value: Methodological and theoretical considerations. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 5(1), 25–43. https://doi.org/10.1037/0278-6133.5.1.25. Levine, R., González, R., & Martínez-Sussmann, C. (2009). Learner diversity in earth system science. Paper prepared for the committee for the review of the NOAA education program. Washington, DC: National Research Council. www7.nationalacademies.org/bose/NOAA%20 Diversity.pdf. Viewed 12 Dec 2011. May, M.L., Contreras, R., Callejas, L., Ledezma, E., & Porter, C. (2002). Final report: Mujer y Corazon: Community health workers and their organizations on the U.S.-Mexico border—An exploratory study. College Station: Texas A&M University School of Rural Public Health. May, M.L., Bowman, G.J., Ramos, K.S., etal. (2003). Embracing the local: Enriching scientific research, education, and outreach on the Texas-Mexico border through a participatory action research partnership. Environmental Health Perspectives., 111(13), 1571–1576. Minkler, M., & Wallerstein, N. (2008). Community-based participatory research for health from process to outcomes (2nd ed.). San Francisco: Jossey-Bass. Moreno Ramirez, D., Ramirez-Andreotta, M.D., Estrella-Sánchez, R., Wolf, A.M., Kilungo, A., Spitz, A.H., & Betterton, E.A. (2015). Pollution prevention through peer education: A community health worker and small and home-based business initiative on the Arizona-Sonora border. International Journal of Environmental Research and Public Health, 12, 11209–11226. https://doi.org/10.3390/ijerph120911209. National Center for Farmworker Health. (1999). Available at: www.ncfh.org National Institute of Environmental Health Sciences. (2015). Advancing environmental justice. https://www.niehs.nih.gov/research/supported/assets/docs/a_c/advancing_environmental_justice_508.pdf. Accessed on 10 Apr 2018. National Research Council. (1996a). National science education standards. Washington, DC: National Academy Press. National Research Council. (1996b). Understanding risk: Informed decisions in a democratic society. Washington, DC: National Academy Press. National Research Council. (2008). Public participation in environmental assessment and decision making. Washington, DC: National Academy Press. National Research Council. (2009). Learning science in informal environments: People, places, and pursuits. Committee on Learning Science in Informal Environments. In P.Bell, B.Lewenstein, A. W. Shouse, & M. A. Feder (Eds.), Board on Science Education, Center for Education. Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.

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Nicholson-Cole, S.A. (2005). Representing climate change futures: a critique on the use of images for visual communication. Computers, Environment and Urban Systems, 29(3), 255–273. O'Fallon, L.R., & Dearry, A. (2002). Community-based participatory research as a tool to advance environmental health sciences. Environmental Health Perspectives, 110(Suppl. 2), 155–159. Ottinger, G. (2010). Buckets of resistance: Standards and the effectiveness of citizen science. Science, Technology & Human Values, 35, 244–270, https://doi.org/10.1177/0162243909337121. Pandya, R.E. (2012). A framework for engaging diverse communities in citizen science in the US. Frontiers in Ecology and the Environment, 10, 314–317. https://doi.org/10.1890/120007. Pope, J. (2013). Pima Association of Governments. Green infrastructure prioritization tool. Retrieved from http://www.pagnet.org/documents/committees/epac/2013/EPAC-2013-11-01Presentation-Green-Infrastructure-Tool.pdf Ramirez-Andreotta MD and Kaufmann D. 2016. Understanding Environmental Health Risk Assessment. Available at: https://superfund.arizona.edu/sites/superfund.arizona.edu/files/ 8.5x14v9final.pdf Ramirez-Andreotta, M.D., Brusseau, M.L., Artiola, J.F., & Maier, R.M. (2013). A greenhouse and field-based study to determine the accumulation of arsenic in common homegrown vegetables. Science of the Total Environment, 443, 299–306. Ramirez-Andreotta, M.D., Brusseau, M.L., Artiola, J.F., Maier, R.M., & Gandolfi, A.J. (2014). Environmental research translation: Enhancing interactions with communities at contaminated sites. Science of the Total Environment, 497, 651–664. Ramirez-Andreotta, M.D., Brusseau, M.L., Artiola, J.F., Maier, R.M., & Gandolfi, A.J. (2015). Building a co-created citizen science program with gardeners neighboring a Superfund site: The Gardenroots case study. International Public Health Journal, 7(1), 139–153. Ramirez-Andreotta, M. D., Brody, J., Lothrop, N., Loh, M., Beamer, P., & Brown, P. (2016a). Reporting back environmental exposure data and free-choice learning. Environmental Health, 2(15). PMID: 26748908. Ramirez-Andreotta, M.D., Brody, J.G., Lothrop, N., Loh, M., Beamer, P.I., & Brown, P. (2016b, July 8). Improving environmental health literacy and justice through environmental exposure results communication. International Journal of Environmental Research and Public Health, 13(7), 690–717. PMID: 27399755. Ramirez-Andreotta MD, Lothrop N, Wilkinson ST, Root R, Artiola JF, Klimecki W, Loh MM. (2016c). Analyzing patterns of community interest at a legacy mining waste site to assess and inform environmental health literacy efforts. Journal of Environmental Studies and Sciences, 6(3), 543–55. Rennie, L., & Johnston, D. J. (2004). The nature of learning and its implications for research on learning from museums. Science Education, 88(S1), S4–S16. https://doi.org/10.1002/ sce.20017. Resnicow, K., et al. (2004). Body and soul a dietary intervention conducted through African- American churches. American Journal of Preventive Medicine, 27(2), 97–105. Roelofs, C., Shoemaker, P., Skogstrom, T., Acevedo, P., Kendrick, J., & Nguyen, N. (2010). The Boston safe shops model: An integrated approach to community environmental and occupational health. American Journal of Public Health, 11, 52–55. Sandhaus S, Ramirez-Andreotta MD, Kilungo A, Wolf AM, Sandoval F, Henriquez P. (2018). Combating climate injustices: An informal science and popular education approach to addressing environmental health disparities. pedagogy in health promotion: The Scholarship of Teaching and Learning, https://doi.org/10.1177/2373379917751476. Seiffert, M.E. B., & Loch, C. (2005). Systemic thinking in environmental management: support for sustainable development. Journal of Cleaner Production, 13(12), 1197–1202. Sibertown, J. (2009). A new dawn for citizen science. Trends in Ecology & Evolution, 24, 467–471. Soleri, D., Long, J.W., Ramirez-Andreotta, M.D., Eitemiller, R., & Pandya, R. (2016). Finding pathways to more equitable and productive public-scientist partnerships. Citizen Science: Theory and Practice, 1(1):9, 1–11, DOI: https://doi.org/10.5334/cstp.46

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Star, S., & Griesemer, J.(1989). Institutional ecology, translations and boundary objects: Amateurs and professionals in Berkeley’s Museum of Vertebrate Zoology 1907–39. Social Studies of Science, 19, 387–420. Taylor, D.E. (2014). The state of diversity in environmental organizations. Ann Arbor: Green 2.0. Tushman, M.L., & Scanlan, T.J. (1981). Boundary spanning individuals: Their role in information transfer and their antecedents. Academy of Management Journal, 24(2), 289–305. U.S.Census Bureau. (2010). Current population survey. U.S.EPA. (2016). Environmental justice. Available at: https://www.epa.gov/environmentaljustice. Accessed on 30 Sept 2017. U.S.EPA. (n.d.). Superfund site: General motors (Central foundry division). Massena, NY.Available at: https://cumulis.epa.gov/supercpad/SiteProfiles/index.cfm?fuseaction=second.Cleanup&id =0201644#bkground. Accessed on 18 Oct 2017. U.S.General Accounting Office. (1983). Siting of hazardous waste landfills and their correlation with racial and economic status of surrounding communities. Washington, DC: United States General Accounting Office. United Church of Christ. (1987). Toxic wastes and race in the United States: A national report on the racial and socio-economic characteristics of communities surrounding hazardous waste sites. NewYork: United Church of Christ, Commission for Racial Justice. University of Arizona Superfund Research Program. (2018). Understanding environmental health risk assessment. Available at: https://superfund.arizona.edu/sites/superfund.arizona.edu/ files/8.5x14v9final.pdf Washington State Department of Health. (n.d.). Lower Duwamish river advisory. Available at: https://www.doh.wa.gov/Portals/1/Documents/Pubs/334-330.pdf

Chapter 5

Advancing Environmental Health Literacy Through Community-Engaged Research andPopular Education CatalinaGarzón-Galvis, MichelleWong, DanielMadrigal, LuisOlmedo, MelissaBrown, andPaulEnglish Abstract This chapter describes the process of increasing and sustaining environmental health literacy (EHL) within communities impacted by environmental hazards and associated health conditions through the comprehensive engagement of community members in environmental health research and education projects. The chapter discusses the use of popular education approaches to facilitate more effective collaboration and optimize mutual co-learning among community members and their project partners. It also explores how, by using this approach, community members can contribute their own knowledge and awareness of environmental and health conditions to advance the research and education process, thereby increasing the EHL of their academically-credentialed partners. Examples from several community-engaged research and education projects are shared to illustrate the versatility of these approaches as a means of raising EHL in a variety of contexts, including researcher-initiated scientific studies, community- initiated trainings, and co-initiated research projects. The case studies demonstrate how popular education and community-engaged research approaches can contribute to building and sustaining more equitable partnerships between impacted communities and their partners (who may be based in varied institutional settings such as academia, government agencies, and nonprofit organizations), with an emphasis on mutual co-learning and knowledge co-creation among community and academically- credentialed partners as key drivers of increased EHL.

C. Garzón-Galvis (*) · M. Wong · D. Madrigal · P. English California Environmental Health Tracking Program, Richmond, CA, USA e-mail: [emailprotected] L. Olmedo Comite Civico del Valle, Brawley, CA, USA M. Brown University of California, Berkeley, CA, USA © The Author(s) 2019 S. Finn, L. R. O’Fallon (eds.), Environmental Health Literacy, https://doi.org/10.1007/978-3-319-94108-0_5

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Keywords Community-based participatory research · Community-engaged research · Community engagement · Community participation · Knowledge co-creation · Mutual co-learning · Popular education

Introduction Environmental Health Literacy has been described as a process for expanding an understanding of the connection between environmental exposures and health outcomes (Finn and O’Fallon 2017). The process of raising EHL can occur at both an individual and community level, resulting in a greater capability to take personal and collective action to reduce exposures and to “address environmental injustices that lead to health disparities” (Finn and O’Fallon 2017: 496). Individuals and communities may be drawn towards this process as a way of critically reflecting on their own socioeconomic circ*mstances, rather than simply incorporating specialized knowledge about environmental factors derived from external sources (Nutbeam 2000; Nutbeam 2008; Finn and O’Fallon 2017). Community-engaged research is a promising, empowerment-oriented approach for raising EHL in which members of communities directly impacted by environmental health disparities are involved in the collection, analysis, and dissemination of data related to these disparities (English etal. 2017). By actively participating in environmental health research, both individuals and communities can develop an increased understanding of the social and environmental determinants of health, as well as the range of actions that can be taken to address them. Moreover, the process of community-engaged research can better position participants to more effectively implement interventions and other actions that can improve local environmental and health conditions. This chapter focuses on how community-engaged research can combine knowledge derived from academic or professional experience with knowledge about local environmental and health conditions that is gained through lived experiences, thereby raising the EHL of community and academically-credentialed partners alike. The term popular education is used in this chapter to refer to a group-based approach to learning that acknowledges and incorporates lived experiences as a valuable source of knowledge (Wallerstein and Duran 2008). By recognizing that all individuals are experts about their own lives and communities of identity, a popular education approach compels one to challenge prevailing power dynamics and hierarchies that value the expertise of academically-credentialed researchers over that of communities directly impacted by environmental health disparities. This chapter is based on the concept that health literacy is an asset that impacted communities also bring, rather than a deficit to be filled or addressed by outsiders (Nutbeam 2008). In this asset-based definition, health literacy is a way to build the confidence, knowledge, and ability of individuals and communities to gain greater control over their health as well as the environmental and social factors that impact it. Increased health literacy resulting from community-engaged research and popular education processes can support a longer-term outcome of greater empowerment

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in decision-making to improve health and quality of life at a personal and community level (Nutbeam 2008; Wiggins 2011).

Background HL andCommunities Impacted byEnvironmental Health E Disparities In an environmental health context, an impacted community can be defined based on geographic proximity to a particular environmental hazard or pathway of exposure. Impacted communities can also be defined based on shared identity, such as a neighborhood where health disparities are concentrated or a group of individuals grappling with similar health outcomes. Low-income communities, communities of color, and other historically disadvantaged communities are more likely to be impacted by environmental hazards and adverse health outcomes (Brown 1995). Institutionalized racism and other structural inequalities contribute to disproportionate environmental exposures and elevated rates of associated health conditions in these communities (Paradies etal. 2015). The prevailing framework for understanding and addressing health conditions primarily emphasizes the role of genetics and individual behaviors as factors contributing to adverse health outcomes. This can contribute to a lack of awareness at an individual and institutional level about the impacts that social and environmental determinants, such as poverty or proximity to pollution sources, have on health outcomes. As a result, residents of impacted communities can have negative experiences with government agencies or perceive that these agencies– such as environmental regulatory agencies, health service providers, or medical institutions– are dismissive about their concerns or even complicit in perpetuating the conditions that they are facing (Chavez etal. 2008). Communities overburdened by environmental hazards often also face other pressing social and economic challenges like high rates of poverty, unemployment, crime, and housing and food insecurity. Given this context, some communities may have limited awareness of or interest in the environmental health issues impacting them. Lack of access to adequate health care and educational opportunities in these communities can also impede access to information about environmental factors that affect health and about interventions that can help reduce environmental exposures. Language barriers and limited access to information and communications technologies such as computers, mobile phones, or the internet can further affect the amount and quality of environmental health information that residents of these communities obtain (Finn and O’Fallon 2017). At the same time, residents of these communities may be more aware of how structural or systemic inequities impact them than the academically-credentialed agency staff, health professionals, and researchers they interact with, who often

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come from more privileged socio-economic backgrounds and communities (Muhammad etal. 2017). These disparate levels of awareness and concern about the impacts of structural inequities on community environmental and health conditions can undermine trust and relationship-building between community and academically- credentialed partners. Explicitly integrating an analysis of how structural inequities shape community environmental and health conditions into community-engaged projects can create an opportunity for establishing authentic dialogue and building trust among all partners (Minkler 2004).

ived Experiences withEnvironmental Hazards andExposures L asaSource ofKnowledge The lived experiences of residents with environmental exposures and related health conditions are a key starting point to increasing EHL in communities contending with environmental health disparities. Personal experiences with managing chronic health conditions like asthma or caring for relatives who are sick can contribute to a heightened awareness of and interest in better understanding how environmental conditions can impact health. Lived experiences with environmental hazards and exposures can also contribute to a greater motivation to learn more about the connections between health and environmental conditions. Those directly impacted by these conditions are also more likely to apply their improved understanding of the relationship between health and environment to engage in behavior change, community activism, or otherwise take personal and collective action to address these conditions (Brown etal. 2011). The lived experiences of residents of impacted communities are also a key source of knowledge that community-engaged research often aims to document or leverage. Community-engaged research affirms that community partners have valuable knowledge to contribute to the research process and that academically-credentialed partners can benefit from learning from their community partners. It also affirms that academically-credentialed partners may have lived experiences besides their professional or educational experiences that they can share and that community partners can benefit from. Mutual co-learning occurs when community and academically-credentialed partners value, share, learn from, and incorporate each other’s lived experiences and knowledge into the research process (Israel et al. 2008). Using approaches that engage community members in the processes of knowledge co-creation and dissemination can increase the EHL of all partners, as well as make the focus and outcomes of research more relevant to community priorities (Wright etal. 2011). Knowledge co-creation, or knowledge mobilization, is the process of engaging diverse stakeholders in generating knowledge together based on mutual learning through meaningful dialogue and collaboration (Abma etal. 2017).

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In contrast to the more conventional concepts of “knowledge transfer” or “knowledge translation,” knowledge co-creation challenges the premise that knowledge is generated by and transmitted via a one-way flow of information from academically-credentialed experts to community members, practitioners, and others.

Theoretical Frameworks Political Economy ofHealth Traditional clinical and public health frameworks tend to focus on individual responsibility in changing behaviors and attitudes in order to improve health. In contrast, a political economy of health framework emphasizes that an individual’s ability to change behaviors and improve health is shaped by the local environment, community setting, and historical context. This historic view reveals how resource allocation and shifts in government policies and power dynamics have shaped health in communities. Demographic factors such as gender, class, and race impact life expectancy in the political economy of health framework. To design and implement effective community-engaged research projects and other programs intended to improve health outcomes, it is essential to have a clear understanding of barriers that undermine health. A political economy of health framework can be useful for describing how social, economic, and environmental factors impact the health of individuals. This framework emphasizes the importance of exploring the ways that structural inequities influence health and examines how history has contributed to health conditions (Minkler etal. 1994). The political economy framework is useful for health care providers, health educators, health promoters, local government officials, researchers, and others working with communities facing health disparities. This framework can support authentic dialogue about how structural inequities impact local environmental and health conditions. This framework can also help to create more effective community- focused solutions that address these inequities.

Community-Engaged Research Principles andPractices In an environmental health context, community-engaged research can be broadly defined as an approach to research that involves those directly impacted by environmental and health disparities in determining what is researched and how the research is carried out (Israel etal. 2008). This approach to research engages members of the impacted community as partners in making key decisions throughout the research process, from defining the research question and devising research methods to

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1. Establish partnership & structure 2. Design study

6. Share results & take action Meaningful Community Participation

3. Recruit participants

5. Interpret results 4.Collect & analyze data

Fig. 5.1 Community-engaged research process. (Adapted from Smith 2011)

interpreting results and disseminating findings. Community-engaged research practitioners contend that the research process is improved and more impactful when communities play a significant role in its design, implementation, and use. The rigor, relevance, validity, and reach of research results can be improved by involving those directly impacted by the research topic in decisions about the research process (Balazs and Morello-Frosch 2013). Figure5.1 shows the stages in a community- engaged research process. According to Arnstein (1969), levels of community participation in decision- making can vary from nonparticipation to tokenism to citizen power, the latter of which includes partnership, delegated power, and citizen control (see Fig.5.2). In theory, community-engaged research aims to involve community partners at the highest rungs of this ladder of participation by giving them the opportunity to be involved in decisions at each stage of the research process. In reality, community partners are not always involved in making key decisions at each stage of the process or may only be involved at certain stages of the process, as determined by or as decided in discussions with research partners (Banks et al. 2013). English et al. 2017 describe three levels of community participation in the research process, ranging from crowdsourcing or involvement in data collection to extreme citizen science that also engages community members in research design as well as interpretation and dissemination of findings.

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Fig. 5.2 A Ladder of Comm unity Participation. (Source: Arnstein 1969)

The “Decide, Announce, Defend” approach to decision-making historically used by government agencies and research institutions has often limited participation of community members to, at best, tokenistic levels of participation in this process (informing, placation, and/or consultation as described by Arnstein). Environmental justice activists and other residents of impacted communities have been instrumental in developing more meaningful structures for community participation in governmental and research decision-making. For example, the strategy of filing administrative complaints with environmental regulatory agencies based on civil rights legislation has resulted in more transparent and inclusive decision-making processes in the creation, implementation, and enforcement of environmental laws and policies (Cole and Foster 2001). Similarly, human subjects’ protocols and informed consent procedures at universities and other research institutions have been expanded and refined based on grievances advanced by individuals and communities whose rights were exploited or violated during the research process. Given this historical context, the expansion of community-engaged and participatory research approaches in the environmental and public health fields has called for developing and applying tools to optimize meaningful community participation at various stages of the research process. These participation tools have ranged from

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integrating community organizing tactics and group facilitation techniques into research processes, to the use of social media and cell phone applications to support broader community participation in data collection efforts. Technological innovations, such as the development of more accessible and affordable environmental sensors, have also enabled more widespread initiation and participation of community members in collecting and analyzing data (English etal. 2017). One outcome of this participation has been the increase in the EHL of those involved in the research.

Popular Education Principles andPractices Popular education is a key approach to optimizing the meaningful participation of impacted community members that has been applied within community-engaged research and education processes. A popular education approach affirms that each person is an expert in their own lives and communities of identity, and it is consistent with a more expansive definition of the environment advanced by the environmental justice movement as places where we live, work, play, pray, and go to school. As an approach to increasing EHL among all partners, popular education involves challenging a conventional linear or “banking” approach to health education in which the teacher or academically-credentialed “expert” deposits information or knowledge into the mind of the student or community member (Wallerstein and Duran 2008). Due to its emphasis on visual, experiential, and kinetic or activity- based forms of learning, popular education is an especially effective approach in working with children and youth, those with limited formal education, those with learning disabilities and other non-traditional learners, those with limited literacy or fluency in a predominant language, and other historically disadvantaged populations (see Chaps. 11 and 12– Sullivan and Vandiver). Championed by Brazilian educator Paulo Freire, popular education is grounded in a more cyclical and iterative understanding of how learning takes place, in which taking collective action based on a shared understanding of patterns across the lived experiences of community members is the ultimate goal (Freire 1970). As shown in Fig. 5.3, Freire’s approach to empowerment education is based in fostering dialogue, questioning the root causes of one’s lived experiences (i.e., developing a critical consciousness), and taking collective action to address these root causes and improve one’s lived reality (Wallerstein and Bernstein 1988). Consistent with a political economy of health framework, this approach also involves developing a shared analysis of power relations and dynamics between the community and institutions like government agencies and corporations that can play a role in changing local conditions. A prevailing use of popular education with impacted communities in the environmental health field is in peer-based health education or promotores de salud

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Fig. 5.3 A popular education spiral of learning. (Source: Freire 1970)

models that engage individuals impacted by a specific environmental hazard or health condition in developing and disseminating health education materials. Promotores are typically members of a community who speak the same language and share similar lived experiences as those they are reaching out to and actively draw on these experiences in sharing information with other community members. These models often employ a train-the-trainers approach to build the capacity of lay health educators from impacted communities who in turn educate and engage other community members in interventions to protect and promote health. For example, Liebman etal. 2007 discuss how the Migrant Clinicians Network used a popular education approach to train promotores in rural New Mexico to share ways to reduce pesticide exposures at home and at work with other farmworkers and their families, with an emphasis on protecting children’s health. Results of pre- and p ost-assessments before and after the promotores’ educational interventions indicate that these activities led to increased knowledge among participants about actions that they could take to reduce exposure and improved behaviors to minimize incidences of accidental pesticide poisonings in the home.

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pplications andExamples ofPopular Education A WithinCommunity-Engaged Research Popular education can be used to build the capacity of residents to engage in research as well as to document community knowledge and integrate community-generated data into the research process. For example, Minkler etal. (2010) discuss how the Environmental Health Coalition involved promotores in southwest San Diego, CA, in mapping industrial land uses, conducting a community survey to identify health concerns, and identifying land use changes based on this research that could be integrated into local planning efforts. The promotores first completed a popular education training that built their research skills and their understanding of the connections between land use, air quality and health. They then applied their increased EHL and skills to engage a broader range of community residents by carrying out research activities, who in turn educate decision-makers about community concerns and advocate for land use changes to protect health as identified by residents. A popular education approach can also create opportunities to explicitly discuss and address unequal power relations in research, as well as to determine how to apply research results to actions that address the environmental and health conditions being studied. Sadd etal. (2014) describe how the Los Angeles Environmental Health and Justice Collaborative analyzed data on the locations of air emissions sources and sensitive land uses collected by government and regulatory agencies. Academically-credentialed partners first determined that “analyzing the government’s own data to assess racial and other disparities would be a powerful way to draw regulatory attention to environmental justice issues” (Sadd etal. 2014: 2015). Community members then undertook a ground-truthing process to validate government data, which deepened their understanding of agency data collection procedures and strengthened their ability to critically engage with regulatory agencies to articulate the limitations of this data. The results were used to support a policy campaign to get the City of Los Angeles to designate impacted neighborhoods as “green zones” offering incentives for greening the operations of local businesses and better enforcing regulations to address the cumulative impacts of environmental hazards.

ow Community-Engaged Research Using Popular Education H Can Increase EHL As applied within a community-engaged research process, a popular education approach can be used to engage members of impacted communities throughout the research process from study design to dissemination of results to action. When used in community-engaged research, a popular education approach affirms the lived experiences of impacted community members as a valued source of knowledge, which the research process can help to document. A popular education approach to

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community-engaged research also demystifies the decisions that researchers make throughout the research process, which is necessary for community members to be meaningfully involved in these decisions. Within a community-engaged research process, this approach can help to maximize the integration of knowledge based on lived experiences with academically-derived knowledge. It is through this integration that mutual co-learning and knowledge co-creation between community and academically-credentialed partners occurs, with increased EHL among all partners as a key outcome. Using popular education as a tool to engage communities in the research process can deepen a shared understanding of the social and environmental determinants of health. This can also support the involvement of residents in identifying and taking public health actions to address environmental health disparities, which can further contribute to increasing EHL in impacted communities. Within a c ommunity-engaged research process, popular education provides greater opportunities to increase EHL by exploring, considering, learning, and sharing both community-based and academically-derived knowledge about how the environment and social factors impact health. Popular education creates avenues for different levels of engagement, with opportunities and support of community and academically-credentialed partners to move toward deeper engagement as EHL increases through mutual co-learning. Community-engaged research provides a structure for community and academically-credentialed partners to apply their increased EHL in a tangible and practical manner by enabling the sharing and co-creation of knowledge.

Methods Community-engaged research and popular education deploy a variety of tools and techniques to demystify technical information and more meaningfully engage impacted residents in the process of learning and documenting shared knowledge. Popular education techniques include question-posing, group dialogue, power mapping, role-playing, action planning, and collaborative problem-solving (see DDD and PI 2010). Critically analyzing and practicing taking action to change power dynamics is integral to many of these techniques (see Freire 1970). Wallerstein and Bernstein 1988 describe how posing a series of questions during facilitated dialogues can be applied in health education and promotion settings through the use of the SHOWeD framework. Each question in this framework, shown in Fig.5.4, corresponds to a step in the popular education spiral of learning and culminates in planning to take action. This series of questions has been widely adapted and integrated into community-engaged research methods such as photovoice, in which residents take pictures to document their lived experiences with an issue and then use these pictures to discuss and share community solutions to address the issue (Hergenrather etal. 2009). Question-posing within facilitated group dialogue can be particularly useful in eliciting, sharing, and documenting community knowledge on an issue as well as in identifying key community concerns or issues to focus research on.

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“What do we See here?”

Defining the Problem

“What’s really Happening here?”

Sharing Experiences

“How does this relate to Our lives?”

Questioning Root Causes

“Why is this happening?”

Exploring Solutions

“How can we become Empowered with our new understanding?

Taking Action

“What can we Do about this?”

Fig. 5.4 The SHOWeD Framework. (Source: Wallerstein and Bernstein 1988)

Role-playing as a popular education technique is often used to provide opportunities for participants to practice using new skills or knowledge as well as to apply and articulate their existing knowledge in new contexts. For example, participatory theater and Theater of the Oppressed approaches (see Chap. 9) engage participants in acting out scenarios based on their lived experiences in which they confront those in positions of power to change the outcome of a disempowering or traumatic situation (Sullivan and Lloyd 2006). Power mapping involves participants in identifying those individuals or entities with the power or authority to make decisions on a particular issue, and in developing strategies to persuade those in power to change their decisions or actions. Action planning often includes elements of power mapping and engages participants in identifying what they themselves can do to advance change on a particular issue. Lastly, collaborative problem-solving often includes elements of both role-playing and power mapping by having participants practice carrying out their actions or strategies to advance change in a scenario based on a real-world context in which they will engage those in power, such as a meeting with decision-makers (see Gonzalez 2014). Co-created knowledge is more likely to result in social impact such as policy and systems changes that can improve health and quality of life, since it is often generated in a context in which it will be directly used or applied (Abma etal. 2017). To set the stage for mutual co-learning and to achieve the goal of increasing EHL among all partners, community knowledge and expertise must be valued on

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Table 5.1 Outcomes of popular education projects. (Source: Wiggins 2011) Health-related outcomes Changes in health-promoting behavior Gains in health knowledge Increased health literacy Improvements in physical markers of health risk factors (e.g., exposure reduction) Actual physical changes in health Improved food security

Empowerment-related outcomes Increases in self-esteem and self-confidence Increases in multiple components of psychological empowerment Development of critical consciousness Increases in sense of community Increased participation Increases in personal and collective control Actions of solidarity to improve the community Increased motivation to bring about change through advocacy

par with knowledge and expertise derived from formal educational systems (Minkler 2004). The goal of increasing the EHL of all partners must be shared among all involved, including academically-credentialed partners, and requires that all partners approach their collaboration with cultural humility and a willingness to learn from their experiences in working together throughout the research process. Cultural humility is an underlying principle of communityengaged research that recognizes that no one else can master or speak for another’s culture or community of identity and, as such, challenges prevailing notions of expertise (Israel etal. 2008) Table5.1.

ase Study: Imperial County Community Air Monitoring C Project This case study outlines the Imperial County Community Air Monitoring Project (Imperial Air Project), a multi-year, federally-funded, community-engaged project conducted in Imperial County, California (English etal. 2017). Located at the U.S.Mexico border, this mainly desert and agricultural county is impacted by a range of environmental health concerns, particularly air pollution and asthma. In this community-initiated project, residents played a key role in establishing a network of 40 particulate matter (PM) air monitors to better understand community-level air quality. The case study describes how community members were engaged in this project, highlighting how popular education methods were interwoven into the project to facilitate engagement. It also demonstrates how the integration of scientific and community knowledge improved the project and led to increased EHL among all partners.

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Background Outdoor air pollution is a serious public health issue, leading to the premature deaths of over 3 million people worldwide annually (WHO 2014). One type, PM pollution, consists of materials such as dust, dirt, soot, smoke, acids, and metals. Major sources of PM include motor vehicles, industrial operations, fires (such as from fireplaces, wildfires, brush or trash burning), and dust (such as from construction, agriculture, and landfills or windblown from open lands). Exposure to PM is known to be harmful to human health. It is related to increased risk of mortality and excess hospitalization, even at levels below regulatory limits (Vaduganathan et al. 2016; Di et al. 2017). PM exposure is also associated with increased respiratory disease, decreased lung function, and asthma attacks in susceptible individuals (Anderson etal. 2012). Information about local PM levels is essential for community members who wish to reduce personal exposures or advocate for emissions reductions. It is also helpful for conducting analyses to examine geographic and temporal patterns and to model the spatial distribution or dispersion of pollutants. In the U.S., government agencies use stationary air monitors to measure ambient PM levels and ensure they remain within regulatory limits. While this information is made available to community residents with varying degrees of accessibility, it is often incomplete. PM levels can vary within small geographic areas, yet regulatory monitors are too costly to install at a density that captures this variation. With the advent of portable, low-cost, next-generation air monitoring technology, it is now feasible to deploy a network of monitors to collect air quality data at a finer geographic resolution. To maximize the utility of this data for residents, community input must be integrated into project activities, including decisions about where the monitors are installed, how the data are analyzed, and how information is presented and disseminated.

Population Affected Because air is ubiquitous and essential to human life, air pollution impacts everyone. However, children, the elderly, individuals with chronic diseases, and outdoor workers are particularly susceptible to PM exposures and related health impacts. In Imperial County– home to a primarily Latino population (82%) and some of the highest rates of unemployment and poverty in the nation (U.S.Census 2010)– residents endure a disproportionate burden of PM-related diseases. For example, the county surpasses all other California counties as having the highest rates of emergency visits and hospitalizations for asthma among school-age children (CEHTP 2017). PM pollution itself is a well-known environmental issue in the county, which has exceeded the California standard for PM10 (particles 10μm or smaller) for several decades, with periods lasting over six months (CARB 2012).

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The Imperial Air Project, which utilized a tiered community engagement process (described below), involved residents from cities and towns throughout Imperial County. These individuals included local activists, parents, high school students, senior citizens, school staff, and teachers. While not a condition for involvement in the study, all participants were concerned about air pollution and either had asthma themselves or knew someone with asthma.

Origin ofProject andProject Goals Although PM pollution is a serious problem in Imperial County, there are only 5 regulatory PM monitors for an area greater than 4000 square miles. Many towns are located miles from the nearest air monitor, prompting concerns that regulatory monitoring data are not representative of local conditions and therefore are not useful in real-time for deciding when to take action to reduce exposure (such as limiting outdoor physical activity or staying indoors). At a meeting about air pollution convened by a local community-based environmental justice organization called Comite Civico del Valle (CCV), residents cited the need for monitors in their own communities. This community input eventually became the inspiration for the Imperial Air Project, which was collaboratively initiated and designed by the project’s three main partners: CCV, the California Environmental Health Tracking Program (CEHTP),1 and University of Washington (UW). The goal of the project was to develop a community air monitoring network that would provide air quality data that (1) could be used in real-time so that residents could be better informed about when to take action to reduce exposure, and (2) would support scientific analyses to identify air pollution trends, patterns, and hotspots to inform policy and other decision-making. Funding for the project was provided by a “Research to Action” grant from the National Institute of Environmental Health Sciences (NIEHS), which required projects to include community engagement and use research results to support actions to improve health.

History ofCollaboration/Partner Roles The ability to pursue a funding opportunity through NIEHS to implement this community vision was enabled by a positive relationship between CCV and CEHTP, which was developed while working together on previous projects, as well as CCV’s membership on CEHTP’s advisory group. The addition of UW as a partner came through CEHTP’s knowledge of their air monitoring expertise and previous community-based work. 1 CEHTP is a collaboration of the Public Health Institute, a non-profit organization, and the California Department of Public Health

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A key aspect of the Imperial Air Project is the strong collaborative partnership among the main project partner organizations. Each partner encompassed a unique, complementary role in the project. CEHTP, as the main recipient of the project funding, provided overall project management and coordination, as well as expertise in community-based participatory research, health education, data visualization and other communications, and environmental health sciences. CCV provided local knowledge about environmental health concerns, strong relationships and networks within and outside of the county, and expertise in outreach, organizing, advocacy, and policymaking. UW provided expertise in air pollution measurement, analysis and spatial modeling, and low-cost sensor technology. Air monitoring and public health researchers from the University of California Los Angeles (UCLA) and George Washington University (GWU) also provided consultation to the project.

Structures forCommunity Engagement The project’s tiered community participation structure was designed to ensure that activities were conducted with meaningful community engagement. CCV’s co- investigator role and active participation in the initiation, design, implementation, and evaluation of project activities ensured strong community engagement throughout. Next, the project’s Community Steering Committee (CSC) – consisting of about 20 community members that included local advocates and concerned residents – contributed additional guidance, participation, and decision-making at key stages. Finally, a broader group of community participants representing towns throughout the county had more limited engagement, participating in several activities, including a process to decide where to put the monitors.

pplication ofaPopular Education Approach inProject A Activities When examining the overall project with an EHL lens, the fundamental knowledge desired by both the community and the academically-credentialed partners was a deeper understanding of community-level air quality in Imperial County. The project aimed to enhance literacy in that area through the collection, analysis, interpretation, and dissemination of this data. A critical part of this was to ensure community input to the network design; if the monitors were placed inlocations that were not meaningful to residents, the resulting data would have limited utility and impact for decision-making. Key aspects of this community engagement process, enhanced by using a popular education approach, are summarized below. These steps follow the popular education spiral of learning as displayed in Fig.5.3 (Freire 1970).

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Step 1: Sharing Lived Experiences and Step 2: Identifying Patterns To select locations for the monitors, the CSC and the broader group of community participants shared their lived experiences with each other and the project team, which enabled them to identify patterns related to air quality issues. Building upon this, they also used their knowledge of who in their community were most vulnerable to air pollution and where they spent time in the community to help identify, assess, and select priority locations for air monitors. This process was conducted over a two-day period and also used a popular education approach. After sharing their knowledge and identifying commonalities, participants learned new information about air monitoring concepts, visited candidate monitoring sites to collect data on site characteristics, assessed the results, and strategized together to make recommendations to the project team on where to place monitors. Step 3: Add New Information To establish the monitoring network, monitors were then deployed at community-selected sites, adding new information by collecting air quality data. As part of this process, CCV staff used their community knowledge and existing relationships to obtain permission from owners of the sites to install the monitors, which greatly facilitated the approval process for monitor siting. CCV staff was trained on how to assemble, install, operate, and maintain the monitors, and were able to assume responsibility for all of these tasks by the end of the process. Step 4: Develop a Shared Analysis The project team set up ongoing calculations of the new monitoring data in order to produce metrics that would inform the community about real-time air quality levels. These metrics were selected based on input by the CSC about what would be most useful and understandable to the community. A spatial analysis of initial data also helped identify patterns of air pollution in the county, which informed the placement of a second round of air monitors. Finally, the monitoring data were used to conduct more complex analyses to assess the quality of the monitors and characterize community-level air quality throughout the county. CCV and the CSC provided feedback on the analyses and contributed to the interpretation of the results, providing insights on potential factors contributing to those patterns and discussing implications and uses of the findings. Step 5: Practice Skills, Strategize CCV and the CSC engaged in several strategizing sessions with the rest of the project team to identify plans for displaying and disseminating the data and conducting other community actions. As part of this, the CSC participated in focus groups and user testing, which informed the data display plan by identifying data visualization methods that would be understandable and appropriate for the community. To disseminate the data, CCV recommended that the air monitoring data be made available on the community-based environmental reporting website that CCV operated (ivanair.org), thus both leveraging and enhancing an existing community resource. Finally, as part of a community action strategy, CCV and the CSC identified strategies for using project data and results to inform environmental and health-related behaviors, programs, and policies and to generate support for sustaining the monitoring network.

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Step 6: Take Action A range of actions was taken by CCV, the CSC, and other community members in response to the new information generated by the monitoring network and other knowledge gained through participation in the project around air quality, health, and air monitoring. CCV conducted targeted outreach about the monitoring network at schools, resulting in increased awareness and use of the data. For example, the monitoring data were used for the “flag programs” at the 14 schools where a monitor was installed. For this program, the school displays a color-coded flag corresponding to the current air quality level–thereby informing the broader community of the air quality status–and keeps students indoors when pollution levels are high. CSC members also engaged in individual actions. For example, one member established a flag program at his senior center, while another founded an environmental leadership program at the high school she was attending. Motivated by her participation in the project and her personal experience as a parent of an asthmatic child, another CSC member applied for and received a postdoctoral fellowship to examine the relationship between air quality (using project data and regulatory monitoring data), asthma outcomes, and agricultural burning. As a mechanical engineer, this represented a new field of study for her. Finally, using what was learned in the project, CCV and the rest of the project team have initiated and supported air monitoring efforts in other communities in California and have provided technical assistance to regulatory agencies tasked with implementing community-level air monitoring. To this point, the project’s community-engaged approach and successful results were a key influence on the introduction and passage of California Assembly Bill 617, which requires local air districts to deploy community air monitoring systems in their jurisdictions (AB 617, Chapter 136, Statutes of 2017). The Imperial Air Project is an example of a larger scale, multi-component project where–due to the tiered participation structure and a complex research design–there were often multiple levels of community engagement occurring at the same time. Although this broad project overview excluded a number of project activities for the sake of clarity, in some cases, the activities occurred in parallel and corresponded to different steps of the popular education spiral, while some activities (such as the site selection process) required their own popular education approach (a spiral within a spiral). This case study highlights the versatility of popular education techniques and the ways in which these, in combination with community engagement strategies, can be integrated into a project to raise the EHL of participants.

I mpacts onEnvironmental Health Literacy andCommunity Empowerment Community engagement in the project resulted in new knowledge about air quality in Imperial, increasing the EHL of the community and academically-credentialed project partners, the broader group of community participants, and other members

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of the community. This information was co-created through the collaborative establishment of the community air monitoring network. Community engagement in this project also resulted in empowerment of community partners and members, as evidenced by evolving roles in the project. For example, several community participants joined the CSC after participating in the site selection process, one CSC member became CCV staff, and CCV staff began taking on roles originally assigned to the academically-credentialed partners (such as monitor deployment and maintenance). Beyond project activities, empowerment of CCV was demonstrated by their increased leadership role in government advisory boards, the increased number of requests for CCV staff to attend and present project findings at regional, statewide, and national scientific meetings (including NIEHS and US EPA), and their new role as mentors for other community-based organizations and regulatory agencies interested in conducting or supporting community air monitoring. Evaluation results also indicate that community partners and members felt that their EHL related to environmental health and air monitoring had increased due to their participation and that they felt more empowered to take action.

Challenges andLimitations The project team encountered multiple obstacles that challenged the team’s ability to effectively establish mechanisms of engagement or threatened the community’s interest or ability to participate in the project. These challenges included the length of the project, the long-distance partnerships (aside from CCV the other main project partners are more than 500miles away from Imperial County), the complex and numerous project activities requiring planning around who, how, when, and what kind of input or engagement should occur for each activity, and the limited staffing among all partners. CCV’s strong engagement in the project helped to mitigate some of these challenges. As a project partner, they had meaningful participation at all team meetings and decision-making processes. Thus, CCV served both as the primary community contributor in the project and as a bridge between the broader community and the project. Furthermore, to enable CCV to sustain such a high level of participation and contribution to the project, it was imperative that they receive equitable financial compensation alongside their academically-credentialed partners, and this understanding was reflected early on in the budget for the grant proposal. Despite the challenges noted above, the level of community engagement and empowerment achieved in this project went well beyond what any of the partners had expected or planned for at the beginning of the project. Therefore, some unexpected challenges arose when the academically-credentialed partners were not expecting or immediately prepared to meet CCV’s requests for additional knowledge sharing (related to monitor assembly and software installation, database configuration, data validation and conversion calculations, QA/QC scripts, and other technical activities).

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Facilitated by the effective communication methods and trust developed amongst the partners, this challenge was resolved by co-developing and implementing specific plans to address these requests. Through this process, CCV was able to gain the additional knowledge and capacities they had identified, aside from some highly technical capacities that could not be fully developed during the project due to the time required to gain them. This example demonstrates the success of the community engagement process, resulting in increased EHL and empowerment within CCV and open communication among project partners that enabled them to reassess and challenge the traditional roles and hierarchies in the research process.

Case Study: HERMOSA Study This case study discusses an opportunity to investigate an emerging environmental health topic by a previously established community-engaged research partnership with youth from a farmworker community. In the Health and Environmental Research on Make-up of Salinas Adolescents (HERMOSA) study, youth researchers from Salinas, CA, a majority Mexican-American farmworker town, and academically-credentialed researchers from UC Berkeley and Clinica de Salud del Valle de Salinas investigated exposure to endocrine disrupting chemicals in adolescent girls (Harley etal. 2016). This case study describes the approach to a project that was initiated by academically-credentialed partners but was then conducted in partnership with youth researchers.

Background Endocrine disrupting chemicals (EDCs) in personal care products have been a growing source of concern because of their ubiquity and their potential health risks. Studies in animals and humans provide evidence that these chemicals may interfere with the human endocrine system. Of particular concern is how they disrupt estrogen and thyroid hormones that regulate development processes. National surveys have found detectable levels of EDCs such as phthalates, parabens, BP-3 and triclosan in 96%, 90%, 97%, and 75% of the population, respectively (CDC 2015). Public awareness of EDCs and concern about their effects is also growing, which is demonstrated by the expanding selection of personal care products that explicitly exclude these as ingredients. Despite these concerns, there are few protections and regulations for personal care products in the United States. To further explore this issue, a new project was proposed with a previously formed community-based participatory research program for youth. The proposed project was a collaboration between youth research partners and academically- credentialed researchers to learn more about how adolescent girls are exposed to

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EDCs in their make-up and personal care products and to evaluate ways to reduce exposure to EDCs.

Population Affected Although all people are vulnerable to the effects of endocrine disrupting chemicals in personal care products, there is special concern for windows of susceptibility that may have an outsized influence on disease development. Puberty is one of the windows, and there is concern for the impact that endocrine disruptors may have on the development of breast cancer. Since the community partner, the CHAMACOS Youth Community Council, is located in a majority Latino community, this project focused on Latino adolescents. The youth researchers included males and females; the participants in the research study were female.

History ofCollaboration/Partner Roles The CHAMACOS Youth Community Council was an element of the community- engagement program of a longitudinal birth cohort study in an agricultural region of California (the CHAMACOS Study). The CHAMACOS Study enrolled 600 pregnant women from 1999–2000 and will continue to follow them and their children until 2024 to better understand the connection between environmental exposure and health outcomes with a focus on neurodevelopmental outcomes of the children (Eskenazi etal. 2003). Study participants were recruited from prenatal care clinics serving the farmworker population and the resulting cohort consists mostly of Mexican-American mothers from low-income farmworker families. More than 150 publications have come from the CHAMACOS study, finding associations of pesticides and other environmental exposures with birth outcomes, neurodevelopment, behavior, asthma and respiratory outcomes, timing of puberty, and obesity. From the beginning, the CHAMACOS study included activities to engage community members in the research ranging from presentations to more interactive participatory research projects (O’Fallon and Dearry 2001). In 2010, investigators involved in the CHAMACOS Study launched the Youth Community Council (YCC) to engage high school adolescents from the community in environmental health, justice, and literacy issues. The first activity of the YCC was a PhotoVoice project in which students took pictures of local environmental risk factors and assets and described their lived experiences to identify what impacts health in their community. The PhotoVoice methodology allowed youth to identify important issues from their perspective, and used the SHOWeD framework described in the Methods section of this chapter to dig into the root causes of why those issues exist and persist. From this activity, youth identified a wide array of issues, many of

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which focused on the built environment of their city (Madrigal etal. 2014). Based on this assessment, they participated in a community effort to provide more opportunities for healthy activities in safe spaces. Following up on this activity, youth researchers worked with the local health department to conduct an assessment on walkability to further investigate issues that impacted health. Through their involvement in this program, the youth researchers were able to work on issues of common concern to members of their community thereby raising their EHL while learning new methods of gathering and producing information. During this time, the relationship between youth researchers and the academically-credentialed researchers also developed as methods of research practice and priorities were shared and discussed.

Origin ofProject andProject Goals Two years after the establishment of the YCC, a grant announcement was issued by the University of California’s Breast Cancer Research Program for projects related to breast cancer that used participatory research methods. The academically- credentialed researchers– aware of the EDCs and knowledgeable about the abilities of the youth researchers– proposed a research project to the entire group: Conduct an intervention study with high school students with the goal of lowering EDC levels through use of personal care products with lower-EDC ingredients. One critical component of this project was the funding source, which required both a research principal investigator and a community principal investigator. The community principal investigator was a staff member of Clinica de Salud del Valle de Salinas who had a strong leadership role in the CHAMACOS study and was a member of the community. This joint leadership codified the collaborative approach taken by the project for all involved.

Structures forCommunity Engagement The project proposal was originally conceived by the academically-credentialed researchers, and then shared with the youth partners to gauge their interest. Once the project was shared, the youth researchers expressed enthusiasm and the final grant proposal was written by academically-credentialed researchers as well as community partner staff. After the project was selected for funding, the methodology was jointly developed between academically-credentialed researchers and youth researchers at bi-monthly meetings held during the school year. Youth researchers helped academically-credentialed researchersto better understand purchasing patterns of personal care products and the relevant behaviors of their adolescent peers. Academically-credentialed researchers proposed a methodology to conduct the study, described the purpose of each element of the study, and discussed with the

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youth the various options for carrying out the study. Through this process youth researchers became better acquainted with the culture and customs of the academic research process.

pplications ofaPopular Education Approach inProject A Activities With emerging environmental concerns that are largely hidden from view, such as endocrine disrupting chemicals, an adapted popular education approach is necessary to incorporate the knowledge and lived experiences of community members. Awareness of endocrine disrupting chemicals in consumer products is relatively new and the impact of EDCs on human health is still being clarified, although public awareness is increasing. The idea for this project was proposed to the youth researchers in a meeting with academically-credentialed researchers; for that reason, when considering the popular education spiral, this project started with “Step 3: adding new information.” From there the youth participants were able to explore their lived experiences as these related to personal care products and identify patterns before entering the shared analysis, practice, and action steps. Step 3: Add New Information The concept of endocrine disrupting chemicals was presented to youth researchers with activities that helped youth learn about common EDCs present in products they use. Using mobile applications that scan bar codes of personal care products used by youth in their homes, they were able to see how many of these products contain phthalates, parabens, BP-3, and triclosan. After the activity, the academically-credentialed researchers described the outline of the project. Adolescent girls would complete surveys about their personal care product use, use low-EDC products for a three-day intervention period, and provide urine samples before and after the intervention to see if levels of EDCs decreased. The youth researchers helped with the design and implementation of the research project. While the topic of EDCs was not familiar, the youth recognized that use of make-up and personal care products is an important issue for adolescents and that exposure during this time period of rapid reproductive development could have long-term health consequences. This recognition represents an early stage of EHL.The study provided the opportunity to work on a health research project that would provide new knowledge and new experiences, and members of the YCC were eager to participate in the venture. Step 1: Share Lived Experiences In the first session with youth researchers, youth were asked to write down all personal care products they use on a weekly basis. Step 2: Identify Patterns Once lists of often-used products had been established, academically-credentialed researchers facilitated a discussion with youth regarding the options available to their families, who made decisions on which products to purchase, and what factors influenced these decisions.

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Step 3: Add New Information (On-going) After the initial project proposal, academically-credentialed researchers continued to provide experiences and activities that would bring new information to youth researchers to help them better understand the context and relevance of EDCs in cosmetics at bi-monthly meetings. Speakers from the Campaign for Safe Cosmetics and from the California Department of Public Health spoke to the YCC about EDCs. From these talks, youth researchers learned about the relatively weak safety regulations imposed on personal care products and strategized to minimize use of personal care products with high levels of EDCs. Step 4: Develop a Shared Analysis After obtaining this new information, examining the lived experiences of youth researchers, and identifying patterns in their personal care product use, the group (youth and academically-credentialed researchers) developed protocols for the intervention study. The basic outlines of the study and the necessary scientific methodologies were provided by the academically- credentialed researchers, but the details and implementation of the project were conducted in deep collaboration with youth partners. Through this process, academically-credentialed researchers learned about the youth’s lived experiences and knowledge, and youth researchers learned about research methodology and practices (Harley et al. 2016). The following list of activities provides selected examples of how this collaboration looked in practice. Selecting a Name for the Project In one of the first sessions, youth and researchers spent 2 h in a brainstorming and discussion process to decide on a name for the program. Priority characteristics identified were to select a name that resonated with the local community, that it be descriptive of the project, and that it be memorable. After hours of debating between several acronyms the group settled on the HERMOSA Study as an acronym (HERMOSA is Spanish for “beautiful”). Allowing the youth to determine the name and design the logo increased their feelings of ownership over the project. Recruiting Participants Youth researchers recruited their peers into the program because they were both well-informed about the project and had trust as members of the community. If potential research participants had questions, they were able to discuss them with the youth researchers. Developing the Intervention Protocol As the protocol was developed, academically-credentialed researchers presented major elements of the study and youth researchers gave feedback. Discussions between the youth and academic researchers helped the group identify priorities from academic researchers on rigor and sound methodology, and the youth were able to assess which elements of the proposed protocol would be acceptable to their peers. With this information, a study design was developed that both gathered

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necessary data and provided useful information for the study participants. The protocol was pilot tested with girls from the YCC who were effectively the first study participants. Testing allowed youth researchers to experience the entire study from the point of view of participants and to provide feedback to assure that the goals of the study were being met. Having academically-credentialed researchers explain the purpose of each element of the study and having youth researchers absorb the information, ask questions, and make recommendations ensured a process that optimized priorities for both the youth and academically-credentialed researchers involved. Carrying out Intervention Protocol During the summer of 2013, the YCC carried out the entire study protocol with 100 adolescent girls from the Salinas area. This included a home visit and two office visits for each student. Due to careful consideration of the methodology, there was a 100% retention rate of participants throughout the three phases of the study. Working on the study gave youth researchers the opportunity to present information to their peers many times throughout the summer, allowing them to gain a deeper understanding of the relationship that study participants had to their personal care products. Step 5: Practice Skills, Strategize After the intervention component of the study was carried out, the youth and academic researchers pivoted to education and action. In addition to conducting the study to learn more about a possible way to lower levels of EDCs in adolescent girls, a critical element of the project was to raise the EHL of the local community and take action to lower EDC levels at a larger scale. To reach these goals, youth researchers developed a series of presentations, trainings, health education materials, and social media communications to raise awareness about EDCs in the community. These health education materials were enhanced with data that came from an analysis included in the study and were reviewed by academically-credentialed researchers. Step 6: Take Action The action goal at the state and national level was another critical element of the campaign. The youth researchers chose to create a petition for local major retailers to encourage them to display low-EDC products more prominently in their stores. They also developed educational materials, including a wallet- sized shopping guide for choosing products with lower levels of chemicals, and participated in health fairs and other events to demonstrate do-it-yourself (DIY) natural beauty product recipes that could be made at home. To share this information the youth spoke with radio, print and TV journalists, an experience that increased the visibility of the study with community members and family members. Finally, youth researchers presented the study findings to policymakers at the California Safer Consumer Products Commission in Sacramento who are responsible for regulations on chemical ingredients in personal care products throughout the state.

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I mpacts onEnvironmental Health Literacy andCommunity Empowerment Through their participation in the design and execution of the study, youth researchers gained a deeper understanding of environmental health and about the topic of endocrine disrupting chemicals in personal care products (Madrigal etal. 2016). As a result, EHL was raised for these youth through the process of their full community engagement in the study. During this process, youth participants used their own experiences and knowledge to help create a successful research investigation. Youth researchers became educators for their community to share information on a topic that is not well understood, namely, exposure to endocrine disrupting chemicals in personal care products. They also became advocates by contacting local companies to provide a greater number of lowerEDC product alternatives, thereby joining larger efforts to prevent exposure to EDCs. The leadership of the youth brought many more community members into the conversation on the topic. The academically-credentialed researchers also gained a deeper understanding of exposure to endocrine disrupting products from the youth researchers by having constant dialogue about this issue throughout the project. By hearing from the youth researchers about their family’s personal care product purchasing habits and perceptions about related health issues, they were able to better understand the context in which the study was taking place. In addition to resulting in an improved study design, having community members actively engaged in the research made the knowledge generated by the study more likely to be distributed and acted upon.

Challenges andLimitations Similar to many emerging environmental health concerns, EDCs were not identified as an urgent priority by youth researchers at the beginning of the project. The project was seen as an opportunity to learn to explore a health topic that was of interest, but was not initially a priority concern for community partners. Balancing the benefits of working together on the project and other concerns for youth in the community was always a consideration. Throughout the project, time was taken during project meetings to discuss other issues salient to the lives of the youth partners. Coordinating the project with academically-credentialed partners was also challenging because this required a more deliberate process to explain the purpose of each element of the study methodology. This additional time can be difficult to schedule when tending to many competing research priorities.

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Cast Study: Ditching Dirty Diesel Collaborative This case study on the work of the Ditching Dirty Diesel Collaborative (DDD) discusses how a robust popular education approach can be used to strengthen community-engaged research and collaborative problem-solving among community groups, agency staff, and academically-credentialed researchers. DDD’s work to reduce the impacts of freight transport illustrates how popular education can support efforts to improve compliance with existing regulations and to engage impacted communities in advancing actions to improve health. This case study demonstrates how popular education activities can be used to disseminate and deepen an understanding of environmental health information within and across community organizations and public health agencies. Lastly, DDD’s work also shows how popular education can be used by community leaders and advocates as a tool to educate decision-makers and others with the power to institute policy and systems change about community concerns and solutions.

Background Freight transport, or goods movement, is the movement of raw materials and products from where they are made to where they are sold. Freight trucks, trains, ships and cargo handling equipment are largely powered by diesel fuel, whose combustion releases toxic air emissions such as diesel particulate matter (DPM 2.5 and 10). Over 70% of airborne cancer risk in California is attributable to exposure to diesel emissions (ARB 1998). Other health impacts of exposure to diesel exhaust include reduced lung function in children, cardiovascular disease, and respiratory illness such as asthma (ARB 2006). Community impacts of living near ports, freeways, railyards, distribution centers, and other freight transport infrastructure include noise and vibrations, disrupted sleep and concentration, and pedestrian safety hazards (DDD and PI 2006).

Populations Affected In California, low-income people, people of color, children, the elderly, and those with preexisting medical conditions are disproportionately affected by the health impacts of freight transport (DDD and PI 2006). In the San Francisco Bay Area, freight traffic is concentrated along major rail lines, freeways, and warehousing areas such as the I-880 corridor servicing the Port of Oakland, the nation’s fifth busiest containerized port (DDD and PI 2011). In Oakland, freight trucks are prohibited on the I-580 freeway, concentrating freight pollution and impacts in flatlands neighborhoods like West and East Oakland which are predominantly low-income and people of color communities. Other freight-impacted communities

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in the region include North Richmond, San Leandro, and Bayview-Hunters Point in San Francisco.

History ofCollaboration andPartner Roles Founded in 2004, the Ditching Dirty Diesel Collaborative (DDD) is a regional coalition of community-based organizations, environmental health advocates, and public health departments working to reduce exposure to diesel pollution in the San Francisco Bay Area. The strategic direction of DDD has historically been set by a Steering Committee comprised of individuals and organizations from freight- impacted communities. DDD members also include environmental health nonprofit organizations, local public health departments, and environmental regulatory agencies like US EPA Region IX’s Air Division. DDD’s core activities are carried out by issue-based committees, which include community leaders, agency staff, and advocates so as to foster collaborative problem-solving to address freight impacts.

Origin ofProject andProject Goals At DDD’s founding gathering in October 2004, over 100 people participated in a participatory mapping exercise to identify freight traffic “hot spots” and issues of concern throughout the San Francisco Bay Area. This mapping exercise helped identify patterns in the impacts that different communities were experiencing, which then led to identifying common solutions to address shared concerns (DDD 2017). Building on the outcomes of this gathering, DDD established two issue- based committees to lead its core campaigns and activities, an Anti-Idling Committee and a Freight Transport Committee. DDD’s core activities include community and decision-maker education, capacity-building, community-engaged research, and policy advocacy to reduce diesel truck idling and other impacts of freight transport operations in nearby communities. Grounded in its community-driven coalition structure, DDD has applied a popular education and leadership development approach to engage freight-impacted communities in regional planning and decision-making on air quality, land use and transportation issues.

Structures forCommunity Engagement Members of DDD’s Anti-Idling Committee developed an educational campaign with and for truck drivers to provide them with information about the health impacts of idling. This campaign also aimed to increase awareness of and compliance with state anti-idling regulations that imposed limits on idling near schools and

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residential areas (ARB 2005). To develop educational materials on the health impacts of idling, DDD members held meetings and focus groups with truck drivers and businesses that identified saving money on fuel and maintenance costs as a key message to emphasize along with protecting health (DDD 2017) Fig.5.5. During Anti-Idling Days of Action in 2005 and 2008, DDD members distributed bumper stickers and placed door hangers on truck cabs in freight-impacted communities around the region to educate truck drivers about the state’s anti-idling laws and how idling could affect health. DDD also developed an educational flyer on California’s anti-idling law for the California DMV’s Commercial Driver’s Handbook in 2008 which was widely distributed in English and Spanish to commercial drivers throughout the state. This information seemed new and of interest to many of the truck drivers that DDD members spoke to, particularly that diesel fumes get more concentrated in truck cabins while they are driving thereby exposing them and their passengers including children and pets (see EBASE and PI 2009). DDD also developed an anti-idling toolkit for schools to educate and mobilize students, teachers, parents, school bus and delivery vehicle drivers, and diesel vehicle drivers to reduce idling at and around schools (DDD 2014). DDD members then distributed the toolkit to schools as well as environmental and public health organizations working with youth and their families.

Fig. 5.5 Educational materials in DDD’s anti-idling education campaign. Source: http:www. ditchingdirtydiesel.org

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Participation in the coalition’s anti-idling education activities built the capacity of DDD members to carry out related community-engaged research and organizing efforts. Communities for a Better Environment (CBE) led a diesel truck count study and particulate matter monitoring project with academically-credentialed researchers that supported an organizing campaign to reduce idling and reroute trucks away from schools and other sensitive land uses in East Oakland (CBE 2010a, b). Building on the prior success of a truck route campaign led by the West Oakland Environmental Indicators Project (WOEIP) (Gonzalez etal. 2011), CBE’s campaign involved local residents, truckers, regulatory agencies, elected officials and Port of Oakland staff in changing the truck route ordinance in East Oakland to reduce diesel exposure and other freight impacts. DDD members also issued a research report estimating the costs to health of freight transport in California that was used to support statewide advocacy efforts to inform California’s Goods Movement Action Plan process (DDD and PI 2006).

Application ofaPopular Education Approach Within theProject Members of DDD’s Freight Transport Committee developed and piloted popular education activities on the health impacts of freight transport in a curriculum guide available in English and Spanish (DDD and PI 2010). The guide includes six chapters that draw on the lived experiences of participants with freight traffic and decision-making. Each of these chapters, described in Fig.5.6, corresponds to a step in the popular education spiral of learning.

1. What Is Freight Transport? Start with our lived experiences and knowledge about freight traffic in our community; learn more about and locate our community within the global freight transport system 2. How Does Freight Transport Affect Us? Identify patterns in lived experiences with freight traffic by mapping “hot spots” and “magnets” for diesel trucks and trains; connect these patterns to health impacts 3. Why Are Trucks and Trains in my Neighborhood? Add new information about how freight-related land uses attract freight traffic into communities; link this to patterns in what we know about freight impacts 4. Who Are the Decision-Makers? Develop a shared analysis of what’s causing and contributing to these patterns, based on learning more about how land use and transportation planning decisions are made 5. What Solutions Can Work for Our Community? Practice skills and strategize using power mapping and action planning, based on a shared analysis of land use and transportation decisions as a root cause 6. How Can We Get Decision-Makers to Support Our Solutions? Practice taking action based on what we’ve learned, using role-playing and group problem-solving to build skills for advocating for our solutions

Fig. 5.6 DDD’s “Gearing Up for Action” Curriculum. (Source: http://www.ditchingdirtydiesel.org/publications)

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Step 1: Share Lived Experiences The activities in the curriculum guide were initially carried out by DDD members as part of several community-engaged research and planning projects to document diesel truck traffic, related emissions, and proposed land use changes in West Oakland and North Richmond (see WOEIP and PI 2003; NHNR and PI 2005). DDD members developed these activities to deepen residents’ understanding of freight transport decision-making and to demystify the technical language of transportation engineers and planners. These activities aim to affirm what community members already know about this issue and to hone their skills in sharing their lived experiences and concerns about the impacts of freight traffic with planners and decision-makers. Step 2: Identify Patterns After the guide was released, DDD members developed and piloted an accompanying training-of-trainers to build the capacity of community organizations and health educators to apply and use the activities in their work. In June 2013, DDD members organized and led a training-of-trainers in Oakland CA attended by over two dozen community organizers, advocates, health educators, and outreach workers (De Leña 2013). The training-of-trainers helped DDD members to identify patterns in the organizing work and resource needs of local community organizations to help inform the coalition’s capacity-building efforts. DDD members worked with interested training participants to develop and deliver tailored community workshops to incorporate freight-related health impacts into their ongoing work. Step 3: Add New Information Planning the trainings-of-trainers and community workshops based on the guide provided an opportunity for mutual co-learning among DDD members by adding new information about varied public health actions that can reduce exposure to diesel exhaust. In 2014 DDD members partnered with CBE and the Alameda County Healthy Homes Department (ACHHD) to develop a Spanish-language workshop for recipients of ACHHD’s services in East Oakland. The workshop – attended by over 20 Latino residents, most of them mothers of asthmatic children– incorporated DDD’s materials on outdoor air pollutants and community- level actions to reduce exposures, ACHHD’s materials on indoor asthma triggers and personal actions to reduce exposures, and CBE’s materials on community organizing efforts underway to improve air quality in East Oakland (Garzón 2014). Step 4: Develop a Shared Analysis DDD members also distributed the guide to state and national coalitions focusing on freight transport issues, thereby supporting mutual co-learning in broader coalition-building efforts. At a 2010 gathering of the Moving Forward Network (MFN), DDD members facilitated a training-of-trainers based on the guide attended by over 30 participants from organizations across the country (Garzón 2010). The training helped coalition members to make connections across freight transport issues faced by diverse communities around the country, while building their capacity to carry out these activities in their own communities (see for example CACWNY 2012).

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The activities in the guide were also integrated into the leadership development work of DDD member organizations, including several youth academies and projects led by WOEIP and the Rose Foundation’s New Voices Are Rising Program. The activities helped West Oakland youth participating in WOEIP’s summer academy to develop a shared analysis that connected freight transport with local business operations, air quality, and public health. The New Voices program also adapted activities from the guide for its Summer Advocacy Training Institute with East Bay high school students to build their capacity to engage inlocal and regional climate, air quality, transportation, and land use planning and decision-making. Step 5: Practice Skills, Strategize DDD also adapted activities in the guide to support community and stakeholder engagement in developing a Health Impact Assessment (HIA) of the Alameda County Goods Movement Plan (the Plan). DDD members partnered with the Alameda County Public Health Department to conduct the HIA, which assessed the potential impacts to health of proposed changes in the county’s freight transport system (e.g., strategies) to be included in the Plan. In 2014 and 2015, DDD held a series of workshops using modified activities from the guide to engage youth, community members, and other stakeholders in informing key decisions in the development of this HIA and to share preliminary results to inform upcoming research activities (DDD 2016). Workshop participants practiced skills by identifying potential health impacts of selected strategies to be included in the Plan, learned more about the decision-making process that would be used to develop and approve the Plan, and then strategized to develop recommendations to address these impacts that could be included in the HIA. Step 6: Take Action To build community capacity to engage with decision-makers, whenever possible DDD held its HIA workshops prior to the workshops that consultants for the Alameda County Transportation Commission (ACTC) conducted as part of the agency’s formal stakeholder engagement process for the county’s Plan. DDD members also met with ACTC staff and consultants and attended ACTC meetings to provide them with feedback on their proposed stakeholder engagement process and research activities for the Plan. Lastly, DDD members submitted written public comments to ACTC on the draft Plan based on the HIA results and recommendations informed by the HIA workshops.

I mpacts onEnvironmental Health Literacy andCommunity Empowerment Through the work of its issue-based committees, DDD leveraged a popular education approach to build community capacity to engage with decision-makers and to strengthen meaningful community engagement in freight transport planning. These activities have ranged from leading educational and organizing campaigns to improve truck routes and compliance with existing anti-idling regulations near

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schools and residential areas, to integrating popular education into community- engaged research and planning efforts to impact local and regional freight transport decision-making (see Garzón et al. 2014). Enabled by its collaborative structure, DDD’s engagement of community-based organizations, environmental health advocates, and local health departments in developing and delivering these activities in a variety of contexts has created opportunities to deepen and sustain Environmental Health Literacy among local agency staff, academically-credentialed researchers, and community leaders. The mutual co-learning and knowledge co-creation that has occurred among DDD members is evidenced by the integration of both lived experience and technical knowledge in the research and educational materials that DDD has developed. This work has also contributed to an increased capacity of community-based DDD member organizations and training participants to deliver and build on this content through their own community workshops, youth leadership development programs, community-engaged research, and organizing campaigns. DDD has also started providing technical assistance to other communities that are early on in their formation and organizing campaigns on freight transport issues. Finally, this work has supported coalition-building at multiple scales (local, regional, state and national), strengthened relationships with agency staff and decision-makers, and contributed to positive changes in the local and regional freight transport system that reduce its impacts on community health and quality of life.

Challenges andLimitations Challenges and limitations have included sustaining the engagement of participants in DDD’s popular education activities in its ongoing capacity-building and policy advocacy work. Freight transport is still often perceived as a technical and specialized issue in impacted communities, and some of the solutions that DDD has emphasized, such as changes in land use and transportation planning decisions, can seem far-off in terms of addressing immediate priorities and concerns. DDD has also experienced some attrition in its membership in recent years due to cuts in foundation funding for freight-related work and changes in members’ organizational priorities. Garnering sufficient resources to support the leadership of community-based organizations on DDD’s Steering Committee has been a continued challenge given the integral yet under-funded role they play in guiding, developing, and carrying out the coalition’s activities. To address this asymmetry in resources, agency and intermediary members of DDD have continued to play a key role by providing in-kind support in advising and carrying out coalition activities so that coalition funding can support the role of DDD members from community organizations.

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Conclusions andFuture Directions The case studies in this chapter demonstrate how popular education techniques can be applied within a diversity of community-engaged research and education projects on environmental health issues in both rural and urban settings to optimize community engagement as well as health- and empowerment-related outcomes. The case studies illustrate how diverse projects– ranging from researcher-initiated academic studies to community-initiated trainings and co-initiated research projects– have leveraged both popular education and community-engaged research approaches to increase the EHL of all partners involved and support varied actions to improve health. These public health actions have included a youth-led campaign to get more local stores to carry lower-EDC personal care products, a school flag campaign to reduce children’s exposure during days with high air pollution levels, and a coalition campaign to address the community health impacts of proposed changes in the freight transport system as part of a countywide planning process. In sum, popular education and community-engaged research are promising empowerment-based approaches to increasing and sustaining the EHL of impacted communities and their academically-credentialed partners. Along with increased EHL, the outcomes of projects applying these approaches include increased individual, community and partnership capacity to take action to improve environmental health conditions, as well as changes in individual behavior, policies, and institutional practices that shape health. While popular education and community- engaged research approaches are effective when used in a comprehensive and community-initiated way, these approaches are still worthwhile to integrate whenever possible in public health studies and other projects or initiatives to optimize meaningful community participation. Below is a summary of recommendations for future directions in the applications of community-engaged research and popular education as approaches to increasing and sustaining EHL among all partners: • Community members/partners should continue to play a stronger role in not just community-engaged research, but community-driven research. • Leveraging existing community capacity helps facilitate increased EHL, but also supports long-term sustainability by increasing the capacity of academically- credentialed partners to make research more relevant and actionable in impacted communities. • EHL within a community should be recognized as originating more from within that community, based in lived experiences with environmental hazards and health conditions, rather than with outside researchers. • The EHL of academically-credentialed researchers/partners should be assessed before and after working with community partners on a project, based on an understanding that mutual co-learning is a key outcome of community-engaged research and education work. • Mutual co-learning between academically-credentialed and community partners should be integrated into scales and tools used to measure EHL.

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• As these approaches to engaging impacted communities become more widely applied, evaluation will be key to learn which elements and approaches of a project provide the greatest gains in understanding and agency as these relate to environmental health. • Funders can play a key role by supporting and facilitating sharing best practices and model projects from the growing network of community-engaged research and popular education practitioners that has as one of its aims to increase environmental health literacy in both impacted communities and in academically- credentialed partners. Acknowledgements We would like to thank our colleagues from project partner organizations involved in the case studies highlighted in this chapter for reviewing and contributing their ideas to help shape earlier drafts: Kimberly Harley, Katherine Kogut, and James Nolan of the UC Berkeley Center for Environmental Research and Children’s Health (CERCH); and Adenike Adeyeye, Brian Beveridge, Paul Cummings, Joel Ervice, Frank Gallo, Ms. Margaret Gordon, Michael Kent, Anna Lee, and Jill Ratner of the Ditching Dirty Diesel Collaborative (DDD). We’d also like to thank the Community Steering Committee and the entire project team of the Imperial Air Project at CEHTP, CCV, UW, UCLA, and GWU. Liam O’Fallon and Symma Finn at National Institutes of Environmental Health Sciences and Rick Kreutzer at California Department of Public Health provided insightful comments on previous chapter drafts. Lastly, we extend our heartfelt appreciation to all the community members and project participants who shared the experiences, knowledge, and leadership that made the content of this chapter possible, though the views expressed in this chapter and any errors are of course our own.

References (ARB), California Air Resources Board. (1998). Proposed identification of diesel exhaust as a toxic air contaminant - initial statement of reasons. Sacramento: California Environmental Protection Agency Retrieved from https://www.arb.ca.gov/toxics/dieseltac/staffrpt.pdf. (ARB), California Air Resources Board. (2005). ARB begins enforcement of its new idling rule. Sacramento, CA: California Environmental Protection Agency Retrieved from https://www. arb.ca.gov/newsrel/nr013105.htm. (ARB), California Air Resources Board. (2006). Quantification of the health impacts and economic valuation of air pollution from ports and goods movement in California. Sacramento, CA: California Environmental Protection Agency Retrieved from https://www.arb.ca.gov/planning/gmerp/plan/appendix_a.pdf. (ARB), California Air Resources Board. (2012). Air quality trend summaries. Retrieved from http://www.arb.ca.gov/adam/trends/trends1.php (CACWNY), Clean Air Coalition of Western NewYork. (2012). Gearing up for action training. Retrieved from https://www.cacwny.org/2012/12/gearing-up-for-action-training/ (CBE), Communities for a Better Environment. (2010a). East Oakland diesel truck survey report. Retrieved from Oakland, CA.: http://www.cbecal.org/wp-content/uploads/2013/01/Dieseltruck-study-FINAL-092710.pdf (CBE), Communities for a Better Environment. (2010b). East Oakland particulate matter 2.5 community air monitoring research report. Retrieved from Oakland, CA: http://www.cbecal.org/ wp-content/uploads/2013/01/East-Oakland-PM-Monitoring-Report-FINAL-2010.pdf (CEHTP), California Environmental Health Tracking Program. (2017). California environmental health tracking program. Retrieved from http://www.cehtp.org

132

C. Garzón-Galvis et al.

(DDD), Ditching Dirty Diesel Collaborative. (2014). Anti-idling toolkit for schools. Oakland: DDD. (DDD), Ditching Dirty Diesel Collaborative. (2016). Making a good move for health: A health impact assessment of selected strategies in the Alameda County goods movement plan. Retrieved from Oakland, CA. (DDD), Ditching Dirty Diesel Collaborative. (2017). A history of success– Anti-idling. Retrieved from http://www.ditchingdirtydiesel.org/about/success-anti-idling (DDD), Ditching Dirty Diesel Collaborative, & (PI), Pacific Institute. (2006). Paying with our health: The real cost of freight transport in California. Retrieved from Oakland, CA (DDD), Ditching Dirty Diesel Collaborative, & (PI), Pacific Institute. (2010). Gearing up for action: A curriculum guide for freight transport justice. Retrieved from Oakland, CA (DDD), Ditching Dirty Diesel Collaborative, & (PI), Pacific Institute. (2011). At a crossroads in our region’s health: Freight transport and the future of community health in the San Francisco Bay Area. Retrieved from Oakland (EBASE), East Bay Alliance for a Sustainable Economy, & (PI), Pacific Institute. (2009). Taking a toll: The high cost of health, environment, and worker impacts of the Oakland port trucking system (1893790193). Retrieved from Oakland, CA: http://pacinst.org/wp-content/ uploads/2013/02/taking_a_toll3.pdf (WOEIP), West Oakland Environmental Indicators Project, & (PI), Pacific Institute. (2003). Clearing the air: Reducing diesel pollution in West Oakland. Retrieved from Oakland, CA. Abma, T.A., Cook, T., Rämgård, M., Kleba, E., Harris, J., & Wallerstein, N. (2017). Social impact of participatory health research: Collaborative non-linear processes of knowledge mobilization. Educational Action Research, 25(4), 489–505. Anderson, J.O., Thundiyil, J.G., & Stolbach, A. (2012). Clearing the air: A review of the effects of particulate matter air pollution on human health. Journal of Medical Toxicology, 8(2), 166–175. https://doi.org/10.1007/s13181-011-0203-1. Arnstein, S. R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35(4), 216–224. Balazs, C.L., & Morello-Frosch, R. (2013). The three R’s: How community based participatory research strengthens the rigor, relevance and reach of science. Environmental Justice, 6(1), 9–16. https://doi.org/10.1089/env.2012.0017. Banks, S., Armstrong, A., Carter, K., Graham, H., Hayward, P., Henry, A., etal. (2013). Everyday ethics in community-based participatory research. Contemporary Social Science, 8(3), 263–277. Brown, P. (1995). Race, class, and environmental health: A review and systematization of the literature. Environmental Research, 69(1), 15–30. Brown, P., Mayer, B., Zavestoski, S., Luebke, T., Mandelbaum, J., McCormick, S., & Lyson, M. (2011). The health politics of asthma: environmental justice and collective illness experience. In Contested illnesses: Citizens, science, and health social movements. University of California Press. Centers for Disease Control and Prevention. (2015). Fourth national report on human exposure to environmental chemicals, updated tables, February 2015. Atlanta: US Department of Health and Human Services. Retrieved from Atlanta, GA: https://www.cdc.gov/biomonitoring/pdf/ FourthReport_UpdatedTables_Feb2015.pdf. Chavez, V., Duran, B., Baker, Q.E., Avila, M.M., & Wallerstein, N. (2008). The dance of race and privilege in CBPR.Community-based participatory research for health: From process to outcomes (pp.91–105). Cole, L.W., & Foster, S.R. (2001). From the ground up: Environmental racism and the rise of the environmental justice movement. NewYork: NYU Press. De Leña, A. (2013). What’s Freight Got To Do With It? Retrieved from Oakland, CA: http:// pacinst.org/whats-freight-got-to-do-with-it/

5 Advancing Environmental Health Literacy Through Community-Engaged Research…

133

Di, Qian, Wang, Yan, Zanobetti, A., Wang, Yun, Koutrakis, P., Choirat, C.,. .. Schwartz, J.D. (2017). Air pollution and mortality in the Medicare population. New England Journal of Medicine, 376(26), 2513–2522. https://doi.org/10.1056/NEJMoa1702747. English, P.B., Olmedo, L., Bejarano, E., Lugo, H., Murillo, E., Seto, E., etal. (2017). The Imperial County community air monitoring network: A model for community-based environmental monitoring for public health action. Environmental Health Perspectives, 125(7), 074501. https://doi.org/10.1289/ehp1772. Eskenazi, B., Bradman, A., Gladstone, E. A., Jaramillo, S., Birch, K., & Holland, N. (2003). CHAMACOS, a longitudinal birth cohort study: Lessons from the fields. Journal of Children’s Health, 1(1), 3–27. Finn, S., & O’Fallon, L. (2017). The emergence of environmental health literacy—From its roots to its future potential. Environmental Health Perspectives, 125(4), 495. Freire, P. (1970). Pedagogy of the oppressed, (pp. 65–80, Myra Bergman Ramos, Trans.). NewYork: Continuum. Garzón, C. (2010). Training the trainers on using popular education to demystify freight transport. Retrieved from Oakland, CA: http://pacinst.org/media-center/online-updates/ november-2010-online-update/ Garzón, C. (2014). Community workshop on taking action to improve indoor and outdoor air quality. Retrieved from http://pacinst.org/about-us/programs/community-strategies-for-sustainabilityand-justice/cssj-program-monthly-updates/ Garzón, C., Dominie, W., & Gordon, M. (2014). Pollution-free housing for all: Coalition-based research, education, and advocacy for healthier housing in transportation and land use planning in the San Francisco Bay Area. Environmental Justice, 7(6), 186–190. Gonzalez, R. (2014). Popular education practices for community organizing. Retrieved from http:// www.facilitatingpower.com/popular_education_for_community_organizing Gonzalez, P.A., Minkler, M., Garcia, A.P., Gordon, M., Garzon, C., Palaniappan, M., etal. (2011). Community-based participatory research and policy advocacy to reduce diesel exposure in West Oakland, California. American Journal of Public Health, 101(Suppl 1), S166–S175. https://doi.org/10.2105/ajph.2010.196204. Harley, K.G., Kogut, K., Madrigal, D.S., Cardenas, M., Vera, I.A., Meza-Alfaro, G., etal. (2016). Reducing phthalate, paraben, and phenol exposure from personal care products in adolescent girls: Findings from the HERMOSA intervention study. Environmental Health Perspectives, 124(10), 1600–1607. https://doi.org/10.1289/ehp.1510514. Hergenrather, K.C., Rhodes, S.D., Cowan, C.A., Bardhoshi, G., & Pula, S. (2009). Photovoice as community-based participatory research: A qualitative review. American Journal of Health Behavior, 33(6), 686–698. Israel, B.A., Schulz, A.J., Parker, E.A., Becker, A.B., Allen, A., GUZ-MAN, J.R., etal. (2008). Critical issues in developing and following CBPR principles (pp.47–66). Liebman, A.K., Juarez, P.M., Leyva, C., & Corona, A. (2007). A pilot program using promotoras de salud to educate farmworker families about the risk from pesticide exposure. Journal of Agromedicine, 12(2), 33–43. https://doi.org/10.1300/J096v12n02_04. Madrigal, D., Salvatore, A., Casillas, G., Casillas, C., Vera, I., Eskenazi, B., & Minkler, M. (2014). Health in my community: Conducting and evaluating PhotoVoice as a tool to promote environmental health and leadership among Latino/a youth. Progress in Community Health Partnerships: Research, Education, and Action, 8(3), 317–329. https://doi.org/10.1353/ cpr.2014.0034. Madrigal, D.S., Minkler, M., Parra, K.L., Mundo, C., Gonzalez, J.E., Jimenez, R., etal. (2016). Improving Latino Youths’ environmental health literacy and leadership skills through participatory research on chemical exposures in cosmetics: The HERMOSA study. International Quarterly of Community Health Education, 36(4), 231–240. https://doi.org/10.1177/02726 84x16657734. Minkler, M. (2004). Ethical challenges for the “outside” researcher in community-based participatory research. Health Education & Behavior, 31(6), 684–697.

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C. Garzón-Galvis et al.

Minkler, M., Wallace, S.P., & McDonald, M. (1994). The political economy of health: A useful theoretical tool for health education practice. International Quarterly of Community Health Education, 15(2), 111–126. https://doi.org/10.2190/t1y0-8aru-rl96-lpdu. Minkler, M., Garcia, A.P., Williams, J., LoPresti, T., & Lilly, J.(2010). Si se puede: Using participatory research to promote environmental justice in a Latino community in San Diego, California. Journal of Urban Health, 87(5), 796–812. https://doi.org/10.1007/s11524-010-9490-0. Muhammad, M., Garzón, C., Perez, A., & West Oakland Environmental Indicators Project (2017). Understanding contemporary racism, power and privilege and their impacts on CBPR. In Community-Based Participatory Research for Health: Advancing Social and Health Equity(3rd ed.). San Francisco: Jossey-Bass. Neighborhood House of North Richmond (NHNR) and Pacific Institute (PI). (2005). Deluged by Diesel: Healthy Solutions for West County. Oakland, CA. Nutbeam, D. (2000). Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15(3), 259–267. Nutbeam, D. (2008). The evolving concept of health literacy. Social Science & Medicine, 67(12), 2072–2078. O’Fallon, L. R., & Dearry, A. (2001). Commitment of the National Institute of Environmental Health Sciences to community-based participatory research for rural health. Environmental Health Perspectives, 109(Suppl 3), 469–473. Paradies, Y., Ben, J., Denson, N., Elias, A., Priest, N., Pieterse, A.,. .. Gee, G. (2015). Racism as a determinant of health: A systematic review and meta-analysis. PLoS One, 10(9), e0138511. Sadd, J., Morello-Frosch, R., Pastor, M., Matsuoka, M., Prichard, M., & Carter, V. (2014). The truth, the whole truth, and nothing but the ground-truth: Methods to advance environmental justice and researcher–community partnerships. Health Education & Behavior, 41(3), 281–290. Smith, H. (2011). Building a research and outreach partnership to improve Latino community health in Charlotte-Mecklenburg: Geographers, doctors, and community members. Charlotte: UNC Charlotte Urban Institute. Sullivan, J., & Lloyd, R. S. (2006). The forum theatre of Augusto Boal: A dramatic model for dialogue and community-based environmental science. Local Environment, 11(6), 627–646. United States Census Bureau. (2010). US Census Bureau Quick Facts: Imperial County. Retrieved from http://www.census.gov/quickfacts/table/PST045215/06025,0636294,00 Vaduganathan, M., De Palma, G., Manerba, A., Goldoni, M., Triggiani, M., Apostoli, P., et al. (2016). Risk of cardiovascular hospitalizations from exposure to coarse particulate matter (PM10) below the European Union safety threshold. American Journal of Cardiology, 117(8), 1231–1235. https://doi.org/10.1016/j.amjcard.2016.01.041. Wallerstein, N., & Bernstein, E. (1988). Empowerment education: Freire’s ideas adapted to health education. Health Education Quarterly, 15(4), 379–394. Wallerstein, N., & Duran, B. (2008). The theoretical, historical, and practice roots of CBPR. Community-based participatory research for health: From process to outcomes, 2nd ed., 25–46. Wiggins, N. (2011). Popular education for health promotion and community empowerment: A review of the literature. Health Promotion International, 27(3), 356–371. https://doi. org/10.1093/heapro/dar046 World Health Organization (WHO). (2014). Burden of disease from ambient air pollution for 2012. World Health Organization. Wright, K.N., Williams, P., Wright, S., Lieber, E., Carrasco, S.R., & Gedjeyan, H. (2011). Ties that bind: Creating and sustaining community-academic partnerships. Gateways: International Journal of Community Research and Engagement, 4, 83–99.

Chapter 6

Returning Chemical Exposure Results toIndividuals andCommunities JuliaGreenBrody, PhilBrown, andRachelA.Morello-Frosch

Abstract Biomonitoring and personal exposure assessments – measurements in people’s blood, urine, breast milk, and other tissues, or in household dust, air, or other personal space– are vital tools for scientists to discover and monitor the links between environmental chemicals and health. For participants who contribute their samples, these methods generate curiosity: What did you find, was it safe, and what should I do? These motivating questions make the process of reporting back to study participants and communities a powerful opportunity to improve environmental health literacy. Decisions about what to report can be challenging, though, because scientists may not yet fully understand how the chemicals affect health, where they come from, or how to reduce exposures. This chapter explores the ethical foundations, evidence-based methods, and outcomes in environmental health studies that reported results for emerging contaminants. Decisions about what and how to report back are guided by human research ethics and knowledge from social science and communications research. Report-back balances the Belmont Report values to avoid harm, maximize benefit, and support the autonomy of study participants, and it goes farther, to support the principles of community-based participatory research, including co-ownership of data, community problem-solving, and shared knowledge as an avenue to shared power and democratizing science. Research about environmental disasters, embodied health movements, and risk communication can guide development of ethical and effective report-back models.

J. G. Brody (*) Silent Spring Institute, Newton, MA, USA e-mail: [emailprotected] P. Brown Northeastern University, Social Science Environmental Health Research Institute, Boston, MA, USA R. A. Morello-Frosch University of California, Berkeley School of Public Health, Berkeley, CA, USA © The Author(s) 2019 S. Finn, L. R. O’Fallon (eds.), Environmental Health Literacy, https://doi.org/10.1007/978-3-319-94108-0_6

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Keywords Biomonitoring · Human research ethics · Return of results · Health literacy · Environmental health · Community based participatory research · Digital health communications Now that more environmental health studies have reported personal as well as study-wide results for emerging contaminants, researchers have empirical data on the outcomes. Interviews with participants who received their results show that report-back is appreciated and builds trust and understanding of science. The “exposure experience” of learning about unseen chemicals in one’s own body or home often changes people’s mental model of pollution from something “out there” to understanding that health-related contaminants often come from everyday environments and consumer products used at home, work, and play. People interpret their results in the context of what they already know about the environmental history of their community, and they add new conceptualizations. They quickly begin brainstorming about sources and strategies to reduce exposures. Researchers benefit, too, by focusing on their data in a new way as they prepare reports and interact with participants about their exposures. To help participants understand and use their results, reports must be designed thoughtfully in collaboration with community members and study participants who can help tailor the plans to the particular context. Including both graphs and text is helpful. Reports must address what is known and not known and, when possible, provide strategies for reducing exposure at the individual level and through community or national action. Digital methods to generate reports for print, computer, or smartphone can make high-quality personalized reports efficient in studies of any size. By continuing to experiment with report-back methods and improve them, researchers can develop novel ways to advance EHL about personal exposures to toxic chemicals.

Background When women on Cape Cod, Massachusetts, first learned that breast cancer incidence was significantly higher there than the statewide rate, their first ideas about “why” turned to pollution from the military base or pesticides like DDT that were used in the 1950s and 1960s on cranberry bogs and sprayed on forests to fight gypsy moths. These factors may, indeed, play a role (Brody etal. 2004; McKelvey etal. 2004), but the emerging science of endocrine disruptors, chemicals that affect the body’s natural hormone systems, suggested additional hypotheses about myriad products used at home and leaching into drinking water (Brody et al. 2005). Laboratory studies showed that chemicals in plastics, home pesticides, cleaners, furniture, personal care products, and countless other everyday items could mimic estrogen (a known breast cancer risk factor), block androgens, disrupt thyroid hormones, or otherwise alter normal growth and signaling systems. To learn more

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about how people are exposed and the levels of exposure, the Cape Cod Household Exposure Study (HES), which began in the late 1990s, tested for 89 endocrine disrupting compounds (EDCs) in 120 homes (Rudel etal. 2003). Trained researchers, including some recruited from affected communities, visited the homes to collect air and dust, and urine samples from women who lived there. Within a few days, Cheryl Osimo, the study coordinator and a Cape Cod resident, was fielding phone calls and queries at the grocery store from study participants who wanted to know when they would receive their own results. At the time, researchers weren’t sure how to respond. Studies that returned results reported back aggregate findings, with the exception of a few well-studied chemicals, like lead and mercury, for which standards were in place for reporting individual results above established clinical health guidelines. But only a few of the chemicals in the Cape Cod household exposure study had been studied enough for scientists to develop health guidelines defining harmful levels of exposure. For 30 of the chemicals analyzed in the Cape Cod study, these household measurements were the first in the U.S., so the scientists didn’t even know what exposure levels were typical across the country, and there were no standards for returning individual results for emerging contaminants nor experience with how such results would be understood. Might telling study participants their personal results cause excess worry and do them more harm than good? On the other hand, don’t people have a right to know their own results, so they can make decisions about how to protect their families and communities from potential harm? Would people want to know about the possible links to illness even if they couldn’t change them? This chapter explores the experiences of researchers, participants and other stakeholders involved in studies that have grappled with these questions over the past two decades and chosen to report back personal chemical exposures to participants as well as sharing aggregate findings with their communities. Over the last decade, laboratory techniques have advanced tremendously, enabling researchers to measure low levels of a larger number of chemicals in people – in blood, urine, fingernails, and other tissues– and in personal spaces like homes, through air and dust measurements. Measurements of chemicals in body tissues are referred to as exposure biomonitoring. These measurements have become a cornerstone of environmental health science, as studies use them to test the links between chemicals in the body and health outcomes, including cancer, neurodevelopment, fertility, obesity, pregnancy outcomes and many other conditions influenced by environmental factors. They are also vital for public health tracking to see trends in population exposures to environmental chemicals. Since 2003, the U.S. Centers for Disease Control and Prevention (CDC) has been tracking levels of hundreds of chemicals in blood and urine samples from participants in the National Health and Nutrition Examination Survey (NHANES), a representative sample of the U.S. population. At the same time, environmental health advocates began pushing for return of individual results. They wanted to “put a face on pollution” to make the NHANES statistics more compelling and they believed that people have a right to know their own results, so they could take action. In 2006, California became the first state to establish its own exposure biomonitoring program, and advocates won provisions in

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the law requiring the program to make biomonitoring results available to any participants who want them (State of California Senate 2006). Canada (Day etal. 2007) and Europe (Becker etal. 2014) also have population biomonitoring programs that allow participants to receive their own results. NHANES currently reports only limited results, such as high levels of lead or mercury (HHS (Department of Health and Human Services) 2017a). Interviews and observations in studies that do report back exposure results show that nearly all participants want to receive their personal reports, even if the health implications are uncertain (Brody et al. 2014). They learn a great deal from their reports about personal and community exposures and about environmental health science more broadly, and they are motivated to take action to reduce their own exposures. As a result, report-back for personal chemical exposures creates a powerful opportunity to improve environmental health literacy (EHL) (Finn and O’Fallon 2017), increasing awareness and understanding of exposures and empowering people to act on this knowledge to protect their health and that of their families and communities. Advocates have used both personal and study-wide exposure biomonitoring results to persuade manufacturers and retailers to change product formulations and avoid some chemicals entirely (O’Rourke 2005). Additionally, such data has figured into important city- and state-level bans or restrictions on certain chemicals and has been central to the profound policy changes in flame retardant requirements that started with California’s reform (Cordner etal. 2013) and continues in the 2017 Consumer Products Safety Commission recommendations to reduce use in children’s products (Hawthorne 2017). In addition to influencing environmental health policies and marketplace practices, the growing experience with report-back, along with ethnographic and interview data on how it works, has contributed to a deeper understanding on the part of researchers of the interplay between returning exposure results, EHL and community-engaged research, with a body of literature attesting to report-back benefits to all parties.

thics, Theory, andEmpirical Traditions toInform Effective E Personal Exposure Reports Decisions about how and what to report back from biomonitoring and personal exposure studies begin with principles of human research ethics, based on the 1978 Belmont Report (Department of Health Education and Welfare 1979), and social science theory and empirical research can inform these ethics decisions as well. Many different fields of research can inform the best ways to return results, including research on environmental disasters, embodied health movements, community-based research, risk communication, and basic psychology and cognitive science about how people understand language and graphs and respond with emotions. Theories can then be tested empirically. For example, whether or

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not people become very worried by receiving personal exposure results, returned to them in specific ways, is an empirical question, and later in this chapter, we discuss research about that concern. Ethics perspectives have shifted dramatically over the past few decades to favor transparent communications in medicine and biomedical research. The U.S.Department of Health and Human Services, through its Secretary’s Advisory Committee on Human Research Protections (SACHRP), currently “recommends a rebuttable presumption in favor of returning individual results. SACHRP intends that this recommendation apply not only to clinical research, but also to other types of research such as genomics research and Social Behavioral research” (SACHRP (Secretary’s Advisory Committee on Human Research Protections) 2016). Environmental health studies have been slow compared with medicine and genetics to adopt routine report-back of personal results when their health implications are uncertain, but many consensus statements now recommend report-back (Brody etal. 2014), and it is increasingly becoming the norm. The multi-stakeholder Boston Consensus Conference on Human Biomonitoring concluded, “…the group asserts that study participants should be able to decide whether or not they want to receive their personal results, and that an important element of this report be inclusion of action steps for reducing exposure, when these are available” (Nelson etal. 2009).

otential Harms andBenefits WithinTraditional Ethics P Frameworks For the past 50years, human research ethics have been monitored by Institutional Review Boards, relying on the Belmont Report together with local values and accumulated experience, primarily in clinical trials and genetics research. The Belmont Report directs biomedical researchers to consider these dimensions: to avoid harm to participants and maximize beneficence, autonomy (the rights of people to make their own decisions), and justice (fair distribution of benefits and risks of studies). Confronted by the unfamiliar issues posed by environmental measurements and biomonitoring, IRBs have often focused on potential harms and de-emphasized other dimensions of Belmont-based ethics (Ohayon etal. 2017). Specifically, they have expressed concern that participants might be harmed by receiving results, because learning about potentially toxic exposures with uncertain health implications could cause emotional distress or lead people to take actions that are costly, unnecessary or harmful (Ohayon etal. 2017). For example, a tribal collaboration with university researchers and a nongovernmental organization sought to conduct a community-based participatory breast milk biomonitoring study among Alaska Native communities. However, the study was thwarted by the Alaska IRB, despite clear support from tribal leadership, on the grounds that the study might discourage breastfeeding. For nearly 5 years, tribal and university researchers worked to

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alleviate these ethical concerns by demonstrating that their biomonitoring study protocol would report results to participants while actively encouraging the continuation of breastfeeding (Saxton etal. 2015). Moreover, the Alaska IRB’s decision to disallow the breast milk study was not supported by a previous study of nursing mothers who were biomonitored in Boston with no documented effect on their breastfeeding behavior (Wu etal. 2009). While the Alaska case involved extreme speculation on the part of the IRB, other instances may require realistic assessment of possible harms. In rare situations, learning personal results could create legal responsibilities to share results with others to warn them about potential health risks (Goho 2016). When household measurements reveal high levels of lead, a wellknown neurotoxicant, this can trigger public health reporting requirements related to property sales; however, for chemicals with uncertain health effects, legal consequences from personal biomonitoring or household measurements would be unusual. Reporting individual results might also be harmful to participants and their communities by creating collective stigma, because entire communities are subsequently perceived as “contaminated” (Quigley 2012). The names of communities like Love Canal can become synonymous with environmental disaster (Gibbs 2011), ruining property values and stigmatizing residents. However, this example also illustrates that reporting on contamination is a necessary step to empowering communities to acquire resources for remediation. Researchers who have experience reporting personal exposure results to their participants are more likely than IRB members to focus on the potential benefits (Ohayon etal. 2017). Giving people the choice to receive their results supports their autonomy and allows them to take actions to reduce their exposures, consistent with their own values and preferences about health risk. Earlier traditions in clinical medicine restricted report-back to results that exceeded a clinical health guideline, such as lead levels above an action level. This model for communicating results is expert-driven, since in this method health professionals make decisions on behalf of study participants without consulting them. Yet this approach is becoming outdated as clinical norms for doctor-patient relationships and biomedical research have evolved to be more open; for example, The Open Notes project has experimented with ways to invite patients to review doctor visit notes online with the goal of improving patients’ understanding of diverse indicators of their health status, fostering more productive communication, correcting errors, and encouraging shared decision-making (Delbanco et al. 2010). The traditional model of clinical ethics with restricted information-flow is particularly problematic for environmental health, because our knowledge about how chemicals affect human health is evolving quickly, and levels of a chemical that once seemed “safe” later are shown to be harmful. Blood lead levels are important examples– just a few decades ago 50 ug/dL was considered safe, the 10ug/dL standard only took effect in 1991, and the current 5 ug/dL level was adopted in 2012. If participants are not informed about their exposure results, then they can’t act on scientific knowledge as it evolves to reduce exposures (Brody etal. 2007).

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ommunity-Based Participatory Research Ethics andActivist C “Data Judo” The first studies to pioneer report-back for large numbers of chemicals with uncertain health effects were inspired by the ethics of community based participatory research (CBPR) and other community-engaged research traditions. CBPR conceptualizes research as a joint enterprise of researchers and community members (Minkler and Wallerstein 2008). Research is designed not only to advance science but also to address community concerns and problems, and build community competence. Data is co-owned by researchers and the individuals and communities that contribute the data, so report-back is simply returning to people something that belonged to them all along (Quandt etal. 2004). Similarly, CBPR values co-learning and respects the knowledge of lay people, so report-back is jointly designed with the idea that community members will contribute local information that is important to the interpretation of scientific data, for example by identifying the likely sources of chemicals that are detected. CBPR views knowledge as power, so sharing research results helps to equalize the power-imbalance between researchers and communities and empower communities to improve health. These ethical values embedded in CBPR strongly favor a “research right-to-know.” However, CBPR ultimately places decisions about whether and how to report in the hands of collaborative research teams, so that potential stigma or other unintended consequences can be weighed and mitigated. The Silent Spring Institute Household Exposure Study that introduces this chapter bridges CBPR ethics and additional traditions of citizen science, since the study was initiated by local activists and conducted by a multidisciplinary team of scientists governed by activist leaders (Brody etal. 2005). In the Cape Cod study and others, access to biomonitoring and exposure assessment has emerged as a vital tool for communities facing disproportionate rates of disease or environmental injustice. Biomonitoring reveals “toxic trespass,” the invisible and involuntary exposure of people to risky or untested chemicals (Morello-Frosch etal. 2009). In other biomonitoring studies conducted by environmental advocacy groups, (such as “Is It In Us” (Is it in us? 2017) and “Mind Disrupted” (Mind Disrupted 2017)) participants have blood or urine samples tested specifically for the purpose of publicly communicating their results in ways that humanize the implications of toxic trespass. Although participants in these studies are not required to disclose their personal results, and disclosure decisions are made after results are returned, these projects still fundamentally challenge IRB conceptions of research privacy, since the open and often online sharing of personal chemical exposure results is considered central to their effectiveness. “Putting a face on pollution” generates compelling personal stories and news media coverage that can effectively engage elected officials and other decision-makers to change chemicals policies. This strategy is described as data judo, because it uses elite, expert methods to achieve grassroots organizing and advocacy goals. Personalized information about chemical body burden is designed to expand public support for toxics use reduction and

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g enerate activism and personal behavior change, such as through consumer campaigns (Morello-Frosch etal. 2009).

Social Science andCommunications Literature Decisions about how best to communicate results can draw on large and diverse theoretical and empirical literature, including some of the topics discussed in this volume. Drawing on this body of evidence can guide report-back to build on people’s cognitive and emotional strengths, social support networks, and coping and resilience strategies, so that learning about toxics in their bodies and homes supports EHL and constructive action rather than generating misplaced worry or alarm. As a starting point, the unseen and involuntary nature of the toxic contamination revealed by personal exposure sampling evokes new translations of research on environmental and technological disasters (Brown and Mikkelsen 1997), and contested illness and embodied health movements (Brown 2007). Results reports engage strange chemical names and scientific knowledge and yet identify them in intimate body fluids and private spaces. Experiences from contaminated communities can be informative about how people learn about toxics, moderate stress, and make decisions, particularly in a context of shared contamination in a place-based study or illness-based social groups. Risk communication literature is also relevant. Public health efforts to moderate public responses to risk or to ramp-up awareness and prompt health-protective action have led to extensive research on how people perceive and evaluate risks, and these ideas have been incorporated into the field of health risk communications. Contrasts between expert and lay risk perceptions are sometimes misinterpreted as implying that lay people are “bad” at understanding uncertainty. However, more sophisticated interpretations show how high concern can result from poor communications by experts and/or represent legitimate expressions of public values (National Research Council 1989). Risk communication literature is a valuable tool for ensuring that report-back meshes with cognitive abilities and personal values in ways that help people calibrate their response. Similarly, research on stress and coping shows how strengthening efficacy can reduce alarm (Lazarus and Folkman 1984). We have found the mental models approach to risk communication particularly helpful both in designing reports and for evaluating how well they are working (Morgan etal. 2002). This method involves eliciting how people understand “the way things work,” so that communications can extend existing mental models or replace misconceptions. Figure 6.1 shows an example of a biomonitoring report designed to shift mental models that equate “BPA-free” with safe. Mental models approaches have been used to shape communications about environmental hazards including radon, nuclear wastes, and dioxin (Morgan etal. 2002; Zikmund-Fisher etal. 2013). In addition, research on data visualization can supplement risk communication science and help to guide specific choices about graphs, tables, illustrations, and

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Fig. 6.1 Communications that connect with people’s existing mental models can avoid misconceptions and improve uptake of new information. This excerpt from a results report for the Detox Me Action Kit (Silent Spring Institute 2017) explains how to reduce exposure and connects the recommendation to personal results

other components of reports. Well-designed graphs can draw on innate abilities to judge visual characteristics, such as above versus below or size comparisons, so understanding depends less on literacy and numeracy (Few 2004; Kosslyn 2006).

Learning andAction Outcomes Now that more than a dozen environmental health studies have reported back personal as well as study-wide results for EDCs and other chemicals, we have empirical data on the outcomes of this approach. Much of this data comes from the Personal Exposure Report-back Ethics (PERE) Study, which has interviewed participants in biomonitoring and household exposure studies in a wide range of settings. The PERE Study includes household exposure studies that have measured endocrine disruptors and carcinogens from consumer products, agriculture, and industry in rural, suburban, and urban settings. Other research covered by the PERE Study includes measurements in blood, urine, drinking water, and soil in communities affected by contaminants from Superfund sites or industrial pollution, and the PERE Study includes cohort studies of children, pregnant women, and older adults from diverse racial, ethnic, and economic backgrounds. Hour-long semi-structured interviews with adult participants and parents of child participants provide rich information about people’s experiences before and after they receive their reports. In the early studies, researchers were relying on experience from the fields of health risk communication and environmental communication, as described earlier, incorporating community knowledge, and then learning by observing outcomes and continuously improving future report-back methods. CBPR values supported the ethical impulse to fully report results, including those with less certain health effects, and encourage the feedback that contributes to further innovation and improvement. One consistent finding is that, when asked, 90% or more of partici-

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pants want to receive their personal results ([Anonymous] 2011; Adams etal. 2011; Altman etal. 2008; Barlow and Kushi 2011).

The Exposure Experience Exposure science quantifies an objective reality – the chemical body burden in a person or place – that is usually not perceptible through the senses. When these results are reported back, they become a part of embodied and subjective knowledge in what we call the “exposure experience” (Altman etal. 2008). The exposure experience adds meaning and interpretation to scientific data and integrates thoughts and feelings. The core of the “exposure experience” in biomonitoring and household studies results when previously unknown chemical exposures become known. People process the new information in the context of what they knew before and make decisions about how to act on it. As one participant described, “We were joining a small group of people that actually knew what their chemical body burden was and that this was info that we would not be able to unlearn…It would be a new kind of responsibility” (Dunagan etal. 2013). Another described the experience this way: It just shows you how many chemicals you are around. I mean, this is only a partial list… And I think that something happens on, you know, on a cellular level between the body and environment, and things that we see in our environment are not as dangerous as the things we don’t see. …we’ve changed our environment so much since we’ve learned how to make things and we don’t know how all this affects the body… (Dunagan etal. 2013).

First reactions often included surprise at the number and range of chemicals detected in samples. During interviews, participants grappled with this information, brainstorming about possible sources in their personal histories and environments. They expressed frustration at not knowing the sources and at government and industry decisions that allowed potentially harmful chemicals to be used and to enter their bodies. Despite the unwelcome news, however, participants have not reported persistent, extreme worry or other distress. People focused more on the future and opportunities to reduce exposures. Participants generally understood the scientific uncertainties and the caveat that biomonitoring results could not be used to explain personal illness, though some reflected with sadness about the possible, though uncertain, connections between chemical exposures and family illnesses. And many were frustrated by the scientific knowledge gaps. Noting that chemicals were detected in every home in the Cape Cod HES, one participant vented that “every home also has corn flakes in the kitchen, but that doesn’t tell me anything” (Altman et al. 2008). A woman who joined the HES to learn about breast cancer risk said, “I basically feel I got nothing,” since results from her own biomonitoring and the parent Cape Cod Breast Cancer and Environment Study were not yet able to explain elevated rates in the region (Altman etal. 2008).

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Changing Mental Models Interviews after people receive their exposure results reveal a tremendous amount of learning and major conceptual shifts. People are generally accurate in reporting how their results compare with others – whether their chemical levels were higher or lower than typical. More importantly for EHL, seeing personal results stimulates extensive reflection about sources and pathways of chemical exposure, and, for many participants, this process leads to an expanded definition of pollution and activates efforts to respond. Typical mental models before people receive their results have two key elements that are transformed by learning personal data. First, “before” images of how people come into contact with harmful chemicals focus on the pollution outdoors. Toxics are identified as coming from the military, waste dumping, industrial emissions, and dirty cities. Residents living away from these sources feel “clean.” It’s easy to understand how these ideas arise from the ready visualization and media portrayals of pollution (Finn and O’Fallon 2017). Second, people widely believe that chemicals and products must be tested for safety before they are sold in the U.S.They think that the federal government oversees consumer products similarly to the evaluation of drugs and food safety, so things on the store shelf can be assumed to meet minimum health-protective standards. Participants vividly describe the shift in mental model when personal results show chemicals from consumer products are in their blood or urine, house dust, or indoor air. For example, the participants quoted below highlight shifts in understanding that the sources of chemicals can come from everyday products in the home, and that despite efforts to avoid chemicals, exposures are ubiquitous: I mean I’m surprised that they can find that many things by looking at your dust and looking at your air, I mean that’s amazing to me that they can actually find chemicals in your air in any amount whatsoever. (Altman etal. 2008) I really did not expect to have any [target chemicals]. Or if I had any, it wasn’t going to be high levels of anything because I actually believed that I was living a really healthy life. And that I was lucky enough not to live next to a landfill, and be in an inner-city, in a ghetto, where a lot of families are exposed to these types of things. Chemicals! I have residues from insecticides and disinfectants and wood preservatives and mothballs…I never, never saw it coming for me. I always have lived a healthy life, lifestyle. And this just shocked me. (Dunagan etal. 2013)

Study results generated a “curiosity gap” (Loewenstein 1994) that led people to reconsider what they thought they knew and open new lines of thinking about how exposures occur. For example, one participant said: I did have some residual pesticides in my urine, and that surprised me because … whence might it have come? How long does it stay in your body? It’s kind of a puzzle … I know that there is a company that comes around maybe once or twice a year as needed to take care of insect invasion around the base of the whole building…

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Sometimes study participants considered themselves well-informed about toxics in consumer products. These participants were particularly surprised that their careful consumer choices had limited effect, since the target chemicals are not always listed on product labels. People also learned about the persistence of some chemicals: The thing that I was really surprised about was that they found DDT here. In the home… that really surprised me because it was outlawed in 1972 I think, and we got this land in 1980 or 1982, and so that really surprised me. All over the Cape they had had a lot of farming here, so I guess it just hangs around for a long, long time. (Dunagan etal. 2013)

Mental models after people receive their results in studies of EDCs typically included these ideas: Researchers found many chemicals in people (or homes); the chemicals come from ordinary products, known and unknown; and researchers are studying them because of concerns about health effects (Brody etal. 2014). These points are fundamentals for functional EHL about EDCs, providing good evidence that personal report-back can be a tool for improving understanding.

Community Context While fundamental shifts in mental models about EDCs are observed across many types of communities, some aspects of interpretation and response are rooted in the eco-social history of specific places and social groups. People look to past experiences with the environment and social power dynamics for cues to interpretation (Edelstein 2004; Kroll-Smith and Couch 1991). For example, the California Household Exposure Study (CA HES) includes two communities that are very different in their environmental exposure profile and social context (Adams etal. 2011). Richmond, CA, is predominantly Latino; one fourth of the residents had incomes below the federal poverty level and half had incomes below 200% of the poverty line, according to the U.S.Census at the time of the study. The homes in the study are next to one of the largest oil refineries in North America, a marine port, and rail and highway corridors. The comparison community, Bolinas, is 20miles west and predominantly white, middle class, and rural. The community is widely identified as liberal and environmentally conscious. Both communities have active environmental organizations: Communities for a Better Environment (CBE) in Richmond and Commonweal in Bolinas. Study results showed a greater number and higher concentrations of industrial and transportation pollutants in Richmond than Bolinas, and provided evidence of chemicals from the refinery penetrating inside homes (Brody etal. 2009). Both communities had very high levels of flame retardants, due to the state’s flammability standard (Zota etal. 2008), which has since been modified, and the two communities had roughly similar levels of many other EDCs from consumer products used indoors (Rudel et al. 2010).

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Before the study, Bolinas participants expected “a clean bill of health.” In contrast, Richmond residents had some rational sense that outdoor polluters affect their lives, but still thought of their indoor environment as protected: I just want to believe it’s ok. But when I think rationally about our situation I’d have to say, “no, it’s not surprising.” But if I think on a feeling level, yeah. On a feeling level I was surprised. (Adams etal. 2011)

Some Richmond participants noted the irony that the official policy for response to accidents at the refinery was “shelter-in-place,” a process of sealing doors and windows to prevent emissions from entering, but homes were already violated by routine emissions. Residents in both communities rethought their understanding of “pollution” when they learned about consumer product chemicals and residues from banned pesticides still lingering in house dust and air. Seeing results for many chemicals, theyalso intuitively interpreted them in terms of cumulative impact, a concept that is becoming more central in environmental health science. Residents of both communities viewed their results as resources for action. In Bolinas, the focus was on personal consumer choices and government regulation of EDCs in products. For example: I’d like to see a ban on bisphenol A in products. And the whole PBDE thing, which I think is a little complicated because the politics around… fires and stuff in California… But I would like to see that people don’t have to … have their pillows doused in something toxic if they don’t want it to be. (Adams etal. 2011)

In Richmond, study participants were motivated to attend public hearings and rallies to oppose a specific proposal to expand the refinery, a plan expected to result in added emissions from dirtier petroleum sources than those currently in use. A resident who had not previously been engaged on this issue said: I’m not very active, but I forced myself to go to the Chevron rally and march…I was so cold! And then I had to walk all the way home. It seemed like a worthwhile thing to do. I felt motivated to do that. (Adams etal. 2011)

Another said: At first I was thinking, “God, I wish I didn’t know all this.” But the more I think about it, the more I understand it, the more I feel like it helps me to, … do whatever I can…if you know the information then you can’t not participate in trying to make change. (Adams etal. 2011)

The ongoing efforts of CBE made it easy for study participants to connect with environmental change efforts. Participants also came to community meetings to discuss action strategies with each other and propose new study hypotheses, for example to compare the effects of the refinery with a power plant in a nearby town. These excerpts illustrate how people absorbed the study results and were motivated to apply them within the eco-social context of their lives. Economic connections between study participants, communities, and polluters can be important dimensions of community context that affect people’s i nterpretation of opportunities for action. In Richmond, refinery employees had incomes sufficient to live farther from the refinery, so participants in our study, which focused on neighborhoods closest to the refinery, were not employed there and did not have a

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direct economic stake in the company. Conversely, in Little Hocking, Ohio, a community where drinking water was contaminated by fluorinated chemicals (PFOA, also known as C8) from DuPont, some residents perceived a conflict between economics and environmental health. Perhaps as a result, biomonitoring participants who learned their personal PFOA blood level results were more likely to take them to their doctor as a personal health concern rather than seeking system-change from industry (Judge etal. 2016). However, others in this community participated in a lawsuit against DuPont and the vast majority changed their drinking water source, as described below.

Learning andAction While the exposure experience and interpretation of results are filtered through local and personal eco-social histories, the PERE Study and others consistently find that people who receive their personal results are motivated to take action. As people read and interpret their results, they brainstorm about possible exposure sources and solutions, suggesting and evaluating alternative scenarios and seeking the strongest options. This phenomenon shows how personal report-back is effective in quickly advancing EHL beyond the “recognize” level of Bloom’s taxonomy of knowledge to “apply, analyze, and evaluate,” as described by Finn and O’Fallon (Finn and O’Fallon 2017). Some EDC exposures are easier than others to avoid through simple changes in consumer behavior or housekeeping. Participants often turn first to these opportunities. They think about avoiding indoor pesticides, switching cleaning and personal care products, or discarding household items that may be exposure sources. Critics argue that focusing on changing consumer behavior can potentially create unreasonable burden and guilt, particularly for mothers who are already busy with shopping, cooking, housekeeping, and childcare, often on top of paid jobs (Mackendrick 2014, 2015). Further, exposure research shows that the effectiveness of behavior change is limited, for example by inadequate labeling (Dodson et al. 2012a, b), limited marketplace options, and the presence of legacy chemicals embedded in buildings and furnishings. We share the concern that the effectiveness of individual choices should not be over-sold without empirical evidence that they are practical and effective (Brody etal. 2007). However, empirically-based recommendations for personal exposure reduction continue to expand (e.g., (Adams etal. 2011; Harley etal. 2016; Rudel etal. 2011; Zota etal. 2017)). Despite the limitations and caveats and the need for systemic reductions in pollutants, participants strongly prefer to have exposure reports that include options for simple actions to reduce exposure, and they pay attention to these messages. In interviews, study participants frequently report making changes that are reasonably expected to reduce exposures relevant to health. For example, this comment by a parent in the CDC Green Housing Study shows how the information in results reports generates learning as a basis for action:

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I thought that using spray chemicals to kill co*ckroaches was the most effective way to kill them, but now I have replaced it with co*ckroach sticky traps, decreasing the use of the spray chemicals. And moreover, after I learned from this research that products with fragrances can increase the chemical concentration in the house, I have decreased the use of products with fragrances. Take shower gel as an example, I now understand that those without fragrances would be better, and I have encouraged my kid to use products with no fragrance.

When community-level or even national change is needed, researchers face challenges to provide direction. In some communities, such as Little Hocking and Richmond, industrial sources were obvious targets for action. In Little Hocking, the researchers made clear action recommendations for residents to reduce PFOA intake from drinking water by switching to other water sources, and the study resulted in DuPont providing free access to bottled water. As a result, it was relatively easy for residents to act on their new awareness and a large majority did so (Emmett etal. 2009). In Richmond, the local environmental justice organization, Communities for a Better Environment, provided an avenue for study participants and community members to take actions to influence refinery emissions. CBE hosted community meetings, alerted community members about opportunities for public testimony, organized rallies, and prepared documents for legal proceedings. These efforts contributed to a court victory that required Chevron to complete a cumulative health and environmental impact assessment, effectively stalling refinery expansion (Brody et al. 2009). However, CBE and other local organizations continue to press for environmental protections from Chevron and other local polluters, drawing strength in part from the study’s success at raising EHL in this community. The desire for collective action can be quite strong: So that’s what I think biomonitoring is good for…personal choices, political action, public awareness… but also the creation of community. When you’ve got a community of people that trust each other and have moved through the grief, then you can start making changes. (Dunagan etal. 2013)

In many studies, however, participants lack a clear avenue for collective action for various reasons. Participants in large cohort studies are not in touch with each other and may not be geographically localized, making collective action difficult. In other studies, the source may not be known or it may be due to national-level government and industrial policies, as is the case for personal care products or other consumer products. In these situations, personal exposure reports can encourage and help participants become engaged in civic life and connect with national efforts. Improving the efficacy of collective action is a major challenge in efforts to strengthen the ability of report-back to move people to the highest levels of EHL.

Free-Choice Learning The early report-back efforts for biomonitoring and personal exposure studies were motivated by CBPR and right-to-know ethics, but the learning outcomes of returning results in these studies highlighted the potential to more intentionally influence

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knowledge and behavior change. Reaching adults generally requires free-choice learning, which is driven by the interests and needs of the learner (Ramirez- Andreotta etal. 2016). The Metals Exposures in Homes (MESH) project adopted this framework in a study involving residents in Dewey-Humbolt, Arizona, near the Iron King Mine and Humboldt Smelter Superfund site and in a region with naturally high levels of arsenic and heavy metals in groundwater and soil. MESH collected biological samples (urine, toenails, and blood) and environmental samples (soil, dust, and water) to test for metalloid content. Participants were interviewed after they received results to see if they understood results and whether they had made informed choices to reduce risks. Participants reported adopting various strategies, including switching to bottled water, reducing soil and dust ingestion of metals by removing shoes at the door, washing hands, wet dusting, closing windows during wind events, and removing carpet. Some took actions such as planting ground-cover to reduce blowing dust. Personal results played a role in generating action, as one participant noted: I had heard that the water was bad here prior to the warnings that we had gotten from the sheriff’s department. But once you see it compared from home samples on your own land that you’re living in … it strikes you deeper. (Ramirez-Andreotta etal. 2016).

The action strategies showed understanding of risk and exposure routes. In addition, participants had many questions and sought further sampling, a health risk analysis, and government response to reduce contamination sources. (Ramirez- Andreotta etal. 2016).

Building Trust Research across many fields of communication reveals the importance of trust to how messages are received and understood. Report-back can be a key element in building trust between researchers and communities, improving the effectiveness of EHL messages and also strengthening the research by supporting recruitment and retention. Participants feel respected and are grateful for the time, attention, and honesty involved in preparing thorough reports. They simply appreciate that they are “not ignored” (Dunagan et al. 2013). The power of transparent reporting to strengthen trust was illustrated in the Growing Up Female cohort in the Breast Cancer and the Environment Research Centers. Researchers unexpectedly discovered high levels of PFOA in girls living in one part of the study area, probably due to contamination of the drinking water supply. Parents expressed their gratitude even though the source of exposure and health implications were not known at the time; as one commented: Let me get this straight: You have found something, you do not know the cause or solution? Thank you for doing the right thing morally and ethically for sharing this information with us. (Hernick etal. 2011).

This kind of disclosure can help to remedy past abuses when researchers failed to tell participants results that were relevant to their health. For example, in the

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prominent Kennedy-Kreiger case, a study of lead remediation in low-income housing, researchers failed to promptly tell study participants, predominantly African Americans, that their children’s blood lead levels were rising due to one of the remediation strategies in the study, and failed to promptly end that part of the study (Mastroianni and Kahn 2002). This failure and others have understandably made it more difficult to enroll African Americans in studies, which, in turn, limits knowledge that could benefit them. Transparent report-back of exposure biomarkers can help to rebuild trust. Report-back also strengthens relationships between researchers and participants by helping to equalize knowledge and create reciprocity. As a CDC Green Housing Study participant said, [I give] information to you guys who are doing the study and then get some information back for my own interest." Another said, “In the beginning I didn't like it [participating in sampling]… You get that feeling like when somebody's intruding ….But then, after seeing the result … I felt more comfortable because this was for the benefit of my daughter and her asthma, her food allergies.

As participants learn about the scientific process, they understand and feel pride in their contribution to knowledge and the health of their family and community. While report-back strengthens perceptions of researchers as allies, conversely, results often are interpreted in the context of past distrust of industry and government that dampens the potentially empowering aspects of receiving results. Participants, across all types of communities, believed that government was not doing enough to protect people from harmful chemicals and industry would not act against its economic interests to protect health (Adams etal. 2011; Altman etal. 2008; Judge etal. 2016).

Effects onResearchers Interestingly, researchers as well as participants learn through the report-back process (Ohayon et al. 2017). They reported deeper engagement with study participants. By focusing on personal results, rather than central tendency results, their attention is drawn to unusually high exposures and to patterns of exposure across multiple chemicals in the same person’s sample. Through this process, report-back has led to the discovery of previously unrecognized chemical sources, such as high PCBs resulting from a wood floor finish used in the 1950s and 1960s (Rudel etal. 2008).

Methods forReturning Personal Results Returning personal exposure results, as practiced in the studies just described, means much more than telling people a single number, like the number of nanograms per liter of an unpronounceable chemical in their blood. Meaningful results

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reports provide extensive contextual information about what the numbers mean, including information about how the person’s results compare to others, what is known and not known about health effects, where the chemicals come from and how to reduce exposures, when that is possible. The Personal Exposure Report-back Ethics (PERE) Study prepared a handbook for researchers that guides development of reports and includes examples of text and graphs (Dunagan et al. 2013). We developed the Digital Exposure Report-Back Interface (DERBI) to make it efficient to produce high-quality reports in studies of any size (Boronow et al. 2017). Examples of several reports are accessible online to show the range and flow of information (Silent Spring Institute 2017). DERBI also includes researcher tools that allow scientists to readily identify outliers and examine mixtures of chemicals, supporting the opportunity described above for researchers to learn through report- back and identify new hypothesis. Table 6.1 shows how data from the study and from scientific literature can be combined to answer people’s typical questions. Knowledge from multiple scientific fields goes into the reports, including epidemiology, exposure science, toxicology,

Table 6.1 Personal exposure reports can combine study data with broader scientific knowledge about chemicals and health in order to answer typical participant questions about their results Questions What did you find? How much?

Responses Results can list the chemical’s technical name and a common language functional name. For example, polybrominated diphenyl ethers (PBDEs) can be described in common language as fire retardants. Participants often want to know the numerical value of their result, but often need contextual information to understand units of analysis. Is that high? Is it In cases where an up-to-date government health guideline exists, it can be a safe? useful benchmark for participants to evaluate whether their result is “high” and whether it is safe. Participants are also interested in how their own result compares with others in the study and with national benchmarks. When a chemical level for one individual or subgroup is much higher than most others, results can stimulate exposure reduction. When health effects are uncertain, researchers can explain the possible health implications that led to the study. Uncertainty can be acknowledged without offering false reassurance. Information about the likely sources of chemical exposures and how they get Where did it into people’s bodies helps build a mental model of exposure and forms a basis come from? for people to brainstorm about exposure reduction that is relevant to their own How was I life. exposed? What can I do? Participants are keenly interested in opportunities to reduce their exposure. Both individual-level and community-, policy-level strategies should be shared. Exposure reduction tips should be evidence-based and acknowledge limitations. What did the Presenting study-wide results can emphasize the most important messages study learn? about health and exposure reduction, adding to EHL.Participants take pride in learning how their data contributed to knowledge to benefit the health of their community.

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Fig. 6.2 Strip plots, such as this one from CHDS, show people how their result compares with others in the study and benchmarks from other studies, such as NHANES

and communications. Because different people have different learning and communications styles, including both text and graphs is helpful. Graphs are particularly useful for showing relationships within the data, since people can distinguish larger-than, smaller-than, and above-below relationships (Few 2004; Kosslyn 2006). These are skills that don’t rely on literacy or numeracy. Figure6.2 from the Child Health and Development Studies shows an example strip plot forthe study participant’s urine result in relation to others in the study and similar people in NHANES (Boronow etal. 2017). Since half the women in the study were African-American and half were not, the graph includes NHANES benchmarks for these groups separately. This type of graph has been usability-tested by the PERE Study, Health Research in Action at the University of California Berkeley (Brown-Williams etal. 2009), and the Three Generations Study (Judd and Plumb 2012). Even participants who lack confidence or “don’t like” graphs generally are able to report accurately on the main messages when queried. Other types of graphs are useful for reporting study-wide results. Bar graphs can be effective for showing differences between groups, and line graphs are effective for showing changes over time. As one example, when we have consulted with community research partners and held local focus groups, community members in Puerto Rico and Latina communities in the contiguous US have told us that reports on fragrance chemicals and phthalates should talk specifically about Fabuloso cleaner, a commonly used brand in Latina communities, and address the idea that chemical fragrances don’t mean “clean.” Other important messages in personalized chemical exposure reports can teach about environmental health fundamentals. For example, parents can learn through exposure reports that children are particularly vulnerable to the adverse effects of environmental chemicals because their bodies are growing and some compounds affect the developing brain, programming of bodyweight, changes at puberty, and other organs. Participants can also learn about routes of exposure– how chemicals enter the body in food and drinking water, ingested house dust, breathed air, and through the surface of the skin. Figure 6.3 shows how study-wide results in the Green Housing Study educate about fragrance as an avoidable asthma trigger. In studies of endocrine disrupting chemicals, reports explain how laboratory studies in animals and cells lead to hypotheses about effects in humans. This infor-

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Fig. 6.3 This pictograph of study-wide results from the CDC Green Housing Study visually shows that fragrance use was ubiquitous in homes. The text links the results to actions that can reduce asthma symptoms for children in the study

mation also makes clear that there is scientific uncertainty about how certain chemicals affect humans because the body of evidence is diverse and evolving. For example, the Child Health and Development Studies (CHDS) report says, “There are different degrees of evidence for links between chemicals and health. Some chemicals have known health effects, while others are suspected to cause certain health problems. When chemicals cause health effects in animals or human cells, scientists often suspect they will cause health problems in people, too. Since we don’t do experiments on people, we often learn how chemicals may affect health by testing in animals or cells in a laboratory, similar to the way we test new drugs for safety.” (CHDS (Child Health and Development Studies) and Silent Spring Institute 2017). Reports also explain that an individual’s exposure results usually cannot be connected directly to a specific illness. The CDC explains, “Detecting levels of an environmental chemical in a person’s blood or urine does not necessarily mean the chemical will cause health effects or disease.” (HHS (Department of Health and Human Services) 2017b). Results reports can also teach participants about the classes of chemicals included in a study. Biomonitoring California is one good resource for emerging and evolving information about the health effects and sources of environmental chemicals (https://biomonitoring.ca.gov/chemicals/fact-sheets), and DERBI reports also are based on libraries of carefully vetted information (Boronow etal. 2017). Scientific consensus statements help clarify whether the scientific evidence is sufficient to conclude that many biomonitored chemicals are harmful to health and if efforts to reduce exposures are warranted (Bennett etal. 2016; Di Renzo etal. 2015; Gore etal. 2015; UNEP/WHO 2013).

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To make sure exposure report content is appropriate, researchers can work with community research partners, create community advisory councils, and convene focus groups to get input for tailoring reports. Once a prototype report is created, one-on-one usability testing is a good method to check how people understand the report and navigate through it. The rough-draft prototype can be tested, revised, and tested again until observations show that it is working well for the study population. Beyond developing the content of personal results reports, research teams, in consultation with community members, need to decide on protocols for returning results. We recommend beginning the report-back process during the informed consent process before samples are collected. At that point, the study team can set expectations for participants about what the results will and won’t be able to tell them, and give them the choice to receive their personal results or not. When results are ready, one or more members of the study team will need to be designated to respond to participant questions. Other protocol decisions include determining whether results will be returned in person, at a community meeting, or online, and related decisions about whether they will be print or digital (computers or smartphone platforms). Digital reports have the advantage of layering information, so even large reports appear more manageable and people can navigate to the content that interests them most. Using digital tools, such as DERBI, to generate reports– returned in print or online – also makes it easier to personalize reports to draw people’s attention to the most important results for them. Using DERBI, researchers can develop decision rules to automate the process of creating personalized headlines to direct participants to notable results and to actions specifically relevant to those headlined findings. Sometimes developing action recommendations can be challenging because the sources of exposure may be unknown or difficult for individuals or local communities to modify. U.S. law allows manufacturers to sell products without disclosing their ingredients, so the specific sources of chemicals detected in people or homes can be unclear (Dodson etal. 2012a, b). Laws, such as flammability standards, and marketplace practices can confuse and limit consumer choices of toxic-free products. For example, recent studies document how state-driven phase-outs of brominated flame retardants decreased the levels of brominated flame retardants but increased exposures to substitute chemicals used to meet the state’s flammability standard (Dodson et al. 2012a, b). Since then, an update to the California rules prompted manufacturers to market flame-retardant-free furniture and children’s products, providing consumers with choices they previously did not have. Similarly, legacy contamination from persistent organic pollutants that have been banned for decades, such as organochlorine pesticides like DDT or flame-retardant compounds like PCBs, can be difficult and costly to remediate. In some situations, less-toxic options, such as eating more organic food, can be costly, thus limiting access for low-income people. Low income residents also are more likely to be affected by industrial pollution, often from major employers, which requires legal or social action to create change. Researchers studying hard-to-avoid toxics face

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Fig. 6.4 Biomonitoring reports should present options for reducing exposures from industry, transportation, and hard-to-avoid products as well as practical consumer choices

challenges to inform and support participants’ efforts to act on their study results and reduce exposures. Figure6.4 shows a conceptual map of how report-back messages can be tailored to realistically describe options for exposure reduction in light of the challenges outlined above.

Community Level EHL In place-based studies, communicating results at a community meeting can raise EHL for both study participants and the broader community. Researchers can present community-wide findings that put personal results in context, and they can directly answer questions. Several major studies, including CHAMACOS and the CDC Green Housing Study, have returned personal results to participants at community meetings. This strategy has several advantages. For participants who attend, it ensures that they personally receive their results, and the researcher is present to directly answer questions. The setting can be a festive celebration of participants’ contributions to their community’s health coupled with serious discussion of the overall study results and implications for health. IRBs are sometimes reluctant to allow meetings of study participants or return of results at a meeting, because of concerns about protecting participants’ confidentiality in terms of their participation in studies. However, community members often have different values, giving lower priority to privacy (Brown et al. 2010). When results are returned at community

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meetings, participants can seek help and support from each other in reading the results, and they can brainstorm together about actions to reduce exposure. In communities with effective environmental advocacy organizations, community meetings can connect individuals with opportunities for collective action. Ted Emmett and his colleagues have developed an approach, called “Community First” Communication, for building trust, effective communication, and public health action in a community affected by industrial pollution (Emmett etal. 2009). The study began with collaboration between researchers based at the University of Pennsylvania School of Medicine and the Decatur Community Association to address community concerns in Little Hocking, on the Ohio River near a fluoropolymer production facility that resulted in drinking water contamination with perfluorooctanoic acid (PFOA). They began by forming a Community Advisory Committee (CAC) composed of community organization leaders, town representatives, state and US Environmental Protection agency staff, and local physicians who were trained in environmental health. The CAC developed communications guidelines with several notable provisions even before the data collection had begun. For example, CAC principles stated that results would be released as soon as the investigators were comfortable that they were ready, rather than waiting for the often- slow full peer-review and publication cycle. Individuals would receive their results before they would be published in the scientific literature. Communications would maximize constructive response, a guideline that encourages researchers to articulate recommendations, and they would minimize “pointless” concern, recognizing that some concern may be warranted and motivating. After individual results were returned, overall community results were presented at an open meeting in a location pre-determined by the CAC.This careful roll-out of results combined with the study data documenting high blood levels of PFOA in community residents resulted in the company providing alternative bottled water and 78% of community members adopted alternative water supplies, either from the company or by using filters or other sources. Community-level report-back of aggregate results fosters an interactive milieu in which both participants and non-participants living in the study community can share details and responses. In our community-level report-back in Richmond, there was a strong sense of project “ownership,” which residents expressed at a very early phase by volunteering to participate, and later, by active participation at community meetings and public hearings. One of the things that surprised and delighted the research team was the response of people suggesting additional research questions. For example, one person suggested that we study another industrial community for comparison, and another argued for using the Environmental Impact Report to see which pollutants were predicted to rise with refinery expansion, and then see if those were the same chemicals we detected, in accordance with the California Environmental Quality Act of 1970. Another said we should look at chemicals that are now at or near EPA and Cal-EPA standards, to predict if refinery expansion would lead to exceedances. These examples of hoped-for future research indicate that residents’ increased EHL led them to participate in discussions of scientific research design (Brown etal. 2012).

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Future Needs The authors of this chapter are optimistic about the opportunities for personal exposure report-back to become a powerful tool for increasing EHL and hopeful that researchers will continue to develop best practices. Currently, report-back in environmental health is not as well developed as in medicine and genetics research, so we recommend the development of guidance documents by NIEHS and professional societies, such as the International Society for Environmental Epidemiology, to establish return of environmental results as the ethical norm, consistent with HHS guidance for human research. Researchers also need access to models and tools, such as DERBI, to make report-back practical. These tools can automate the process of personalizing results as well as provide resources such as libraries of vetted information in lay language (Boronow etal. 2017). Developing the content for reports requires specialized, multi-disciplinary knowledge from toxicology, exposure science, epidemiology, and communications, and individual researchers should not be expected to cover all of these fields anew for each study. Instead, they can draw on past reports for the same compounds and, in concert with representatives of their study community and participants, modify content and presentation to their own setting. New applications of report-back can also creatively attack resistant problems, such as better ways to visualize log-scale distributions. Studies of baseline EHL can help to highlight the core messages that need to be communicated along with study results. Both qualitative and quantitative assessments of how report-back influences EHL, behavior change, and community engagement will continue to improve practices and make report-back more effective for advancing environmental public health.

Conclusion Exposure biomonitoring– the measurement of chemicals in biological samples of blood, urine, and other tissues – and environmental sampling in household air and dust and other personal spaces have become a cornerstone of environmental health science. With these personal measurements comes an ethical responsibility to report back to people about their own exposures, both giving people their personal results and giving communities their aggregate results. Beyond just an ethical responsibility, this is a powerful opportunity to expand EHL.Going even further, we can see that the ethical issues and EHL issues are completely intertwined, combining to make a major advance in environmental health science. The ethics framework for reporting personal results draws on principles of community-based participatory research, including concepts of co-ownership of data, co-learning by experts and lay people, and knowledge-sharing to equalize power and support autonomy. A “research right to know” allows people the choice to receive their results or not. When results are returned with contextual information

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about chemical sources, health effects and uncertainties, and strategies to reduce exposure, people feel respected and do not become overly alarmed. Instead, evidence from studies in many different types of communities shows that returning personal results can quickly advance EHL.People are highly interested in their own results, so report-back generates curiosity and motivates learning that changes people’s mental models of toxic chemicals and health. Often, participants begin with a mental model of toxic chemicals coming from industrial smoke stacks, waste dumping, or military sites, and through the “exposure experience” of learning about invisible chemicals in their own body or home, they come to understand that some of the chemicals they encounter every day in air, drinking water, and consumer products may also affect health. The new information stimulates brainstorming about possible exposure sources and connections to their personal history. As participants learn about sources and pathways of exposure, they generally understand uncertainties in links to health. They are vitally interested in both individual and collective actions to reduce their exposures. By sharing knowledge through report-back, researchers can support communities in translating results into action to improve environmental public health. In addition, this dialogue can help increase the EHL of the researcher, too, by tapping into the local and cultural knowledge of the community partners. To support public understanding, personal results reports include much more than a number. Study participants want to know what was found in their own sample and interpretive information about whether their levels are high in relation to other people and what is known about health effects. They particularly want to know about exposure sources and how to reduce them. Research teams need to carefully consider what options are available for their participants, considering the eco-social history and community context. By planning and pilot testing in collaboration with community advisers or others who are similar to study participants, researchers can make their reports convenient, accessible, and responsive to local concerns. Digital methods, such as DERBI– the Digital Exposure Report-Back Interface– streamline report preparation and allow researchers to draw on tested graph formats and libraries of evidence-based plain language about health effects and exposure reduction. Senior researchers on the study team will still need to develop main messages about their study-wide results, though DERBI provides models and guidance. Through this process, researchers themselves gain by increasing their own EHL, since developing reports can be considered an example of the “create” level in the EHL model (Finn and O’Fallon 2017). By continuing to experiment with report-back methods and improve them, researchers can develop novel ways to advance EHL about personal exposures to toxic chemicals. These topics are vital to personal health and public health, as science reveals the complex ways in which low doses of certain chemicals can influence pathways to disease.

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References [Anonymous]. (2011). Communicating individual-level results to participant families. In Breast Cancer and the environment research program annual meeting. Cincinnati. Adams, C., Brown, P., Morello-Frosch, R., Brody, J. G., Rudel, R., Zota, A., et al. (2011). Disentangling the exposure experience: The roles of community context and report-back of environmental exposure data. Journal of Health and Social Behavior, 52(2), 180–196. Altman, R. G., Morello-Frosch, R., Brody, J. G., Rudel, R., Brown, P., & Averick, M. (2008). Pollution comes home and gets personal: women's experience of household chemical exposure. Journal of Health and Social Behavior, 49(4), 417–435. Barlow, J., & Kushi, L. (2011, November 16). Communicating individual-level research results to participant families. In Proceedings of the BCERP annual meeting. Cincinnati. Becker, K., Seiwert, M., Casteleyn, L., Joas, R., Joas, A., Biot, P., et al. (2014). A systematic approach for designing a HBM pilot study for Europe. International Journal of Hygiene and Environmental Health, 217(2–3), 312–322. Bennett, D., Bellinger, D.C., Birnbaum, L.S., Bradman, A., Chen, A., Cory-Slechta, D.A., etal. (2016). Project TENDR: Targeting environmental neuro-developmental risks the TENDR consensus statement. Environmental Health Perspectives, 124(7), A118–A122. Boronow, K.E., Susmann, H.P., Gajos, K.Z., Rudel, R.A., Arnold, K.C., Brown, P., etal. (2017). DERBI: A digital method to help researchers offer “right-to-know” personal exposure results. Environmental Health Perspectives, 125(2), A27–A33. Brody, J.G., Aschengrau, A., McKelvey, W., Rudel, R.A., Swartz, C.H., & Kennedy, T. (2004). Breast cancer risk and historical exposure to pesticides from wide-area applications assessed with GIS. Environmental Health Perspectives, 112(8), 889. Brody, J.G., Tickner, J., & Rudel, R.A. (2005). Community-initiated breast cancer and environment studies and the precautionary principle. Environmental Health Perspectives, 113(8), 920. Brody, J.G., Morello-Frosch, R., Brown, P., Rudel, R.A., Altman, R.G., Frye, M., etal. (2007). Improving disclosure and consent: “Is it safe?”: New ethics for reporting personal exposures to environmental chemicals. American Journal of Public Health, 97(9), 1547–1554. Brody, J.G., Morello-Frosch, R., Zota, A., Brown, P., Perez, C., & Rudel, R.A. (2009). Linking exposure assessment science with policy objectives for environmental justice and breast cancer advocacy: The northern California household exposure study. American Journal of Public Health, 99(Suppl 3), S600–S609. Brody, J.G., Dunagan, S.C., Morello-Frosch, R., Brown, P., Patton, S., & Rudel, R.A. (2014). Reporting individual results for biomonitoring and environmental exposures: Lessons learned from environmental communication case studies. Environmental Health, 13, 40. Brown, P. (2007). Toxic exposures: Contested illnesses and the environmental health movement. NewYork: Columbia University Press. Brown, P., & Mikkelsen, E.J. (1997). No safe place: Toxic waste, leukemia, and community action. Berkeley: University of California Press. Brown, P., Morello-Frosch, R., Brody, J.G., Altman, R.G., Rudel, R.A., Senier, L., etal. (2010). Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study. Environmental Health, 9, 39. Brown, P., Brody, J. G., Morello-Frosch, R., Tovar, J., Zota, A. R., & Rudel, R. A. (2012). Measuring the success of community science: The northern California household exposure study. Environmental Health Perspectives, 120(3), 326. Brown-Williams, H., Graham, C., & Oliver, M. (2009). Report on CYGNET study focus groups: Communicating results to study participants. Berkeley: Health Research to Action, University of California, Berkeley School of Public Health. Cordner, A., Mulcahy, M., & Brown, P. (2013). Chemical regulation on fire: Rapid policy advances on flame retardants. Environmental Science & Technology, 47(13), 7067–7076. Day, B., Langlois, R., Tremblay, M., & Knoppers, B.M. (2007). Canadian health measures survey: Ethical, legal and social issues. Health Reports, 18(Suppl), 37–51.

6 Returning Chemical Exposure Results toIndividuals andCommunities

161

Delbanco, T., Walker, J., Darer, J.D., etal. (2010). Open notes: Doctors and patients signing on. Annals of Internal Medicine, 153(2), 121–125. Department of Health Education and Welfare. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Federal Register, 44(76), 23192–23197. Di Renzo, G.C., Conry, J.A., Blake, J., DeFrancesco, M.S., DeNicola, N., Martin, J.N., etal. (2015). International Federation of Gynecology and Obstetrics opinion on reproductive health impacts of exposure to toxic environmental chemicals. International Journal of Gynaecology and Obstetrics, 131(3), 219–225. Dodson, R.E., Nishioka, M., Standley, L.J., Perovich, L.J., Brody, J.G., & Rudel, R.A. (2012a). Endocrine disruptors and asthma-associated chemicals in consumer products. Environmental Health Perspectives, 120(7), 935–943. Dodson, R. E., Perovich, L. J., Covaci, A., Van den Eede, N., Ionas, A. C., Dirtu, A. C., et al. (2012b). After the PBDE phase-out: A broad suite of flame retardants in repeat house dust samples from California. Environmental Science & Technology, 46(24), 13056–13066. Dunagan, S., Brody, J., Morello-Frosch, R., Brown, P., Goho, S., Tovar, J., etal. (2013). When pollution is personal: Handbook for reporting results to participants in biomonitoring and personal exposure studies. Newton: Silent Spring Institute. Edelstein, M. R. (2004). Contaminated communities: Coping with residential toxic exposure. Boulder: Westview Press. Emmett, E. A., Zhang, H., Shofer, F. S., Rodway, N., Desai, C., Freeman, D., et al. (2009). Development and successful application of a “community-first” communication model for community-based environmental health research. Journal of Occupational and Environmental Medicine, 51(2), 146–156. Few, S. (2004). Show me the numbers: Designing tables and graphs to enlighten. Oakland: Analytics Press. Finn, S., & O’Fallon, L. (2017). The emergence of environmental health literacy—From its roots to its future potential. Environmental Health Perspectives, 125(4), 495. Gibbs, L.M. (2011). Love Canal: And the birth of the environmental health movement. Washington, DC: Island Press. Goho, S. A. (2016). The legal implications of report back in household exposure studies. Environmental Health Perspectives, 124(11), 1662–1670. Gore, A.C., Chappell, V.A., Fenton, S.E., Flaws, J.A., Nadal, A., Prins, G.S., etal. (2015). Executive summary to EDC-2: The Endocrine Society’s second scientific statement on endocrine-disrupting chemicals. Endocrine Reviews, 36(6), 593–602. Harley, K.G., Kogut, K., Madrigal, D.S., Cardenas, M., Vera, I.A., Meza-Alfaro, G., etal. (2016). Reducing phthalate, paraben, and phenol exposure from personal care products in adolescent girls: Findings from the HERMOSA intervention study. Environmental Health Perspectives, 124(10), 1600–1607. Hawthorne, M. (2017). Federal panel votes to warn public about flame retardants in baby products, furniture. Chicago Tribune (Chicago) 20 September 2017. Hernick, A. D., Brown, M. K., Pinney, S. M., Biro, F. M., Ball, K. M., & Bornschein, R. L. (2011). Sharing unexpected biomarker results with study participants. Environmental Health Perspectives, 119(1), 1. HHS (Department of Health and Human Services). (2017a). NHANES health measurements. Available: https://wwwn.cdc.gov/nchs/data/nhanes/2017-2018/documents/2017_health_measurements_list.pdf. Accessed 18 Oct 2017. HHS (Department of Health and Human Services). (2017b). National report on human exposure to environmental chemicals: Frequently asked questions. Available: https://www.cdc.gov/exposurereport/faq.html. Accessed 23 Oct 2017. Is it in us?. (2017). Project results. Available: http://isitinus.org/project.php. Accessed 10 Oct 2017. Judd, S., & Plumb, M. (2012). Reporting personal exposures to environmental chemicals: Focus group feedback. Oakland: Child Health and Development Studies, Public Health Institute.

162

J. G. Brody et al.

Judge, J.M., Brown, P., Brody, J.G., & Ryan, S. (2016). The exposure experience: Ohio river valley residents respond to local perfluorooctanoic acid (PFOA) contamination. Journal of Health and Social Behavior, 57(3), 333–350. Kosslyn, S.M. (2006). Graph design for the eye and mind. NewYork: Oxford University Press. Kroll-Smith, J.S., & Couch, S.R. (1991). As if exposure to toxins were not enough: The social and cultural system as a secondary stressor. Environmental Health Perspectives, 95, 61–66. Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal, and coping. NewYork: Springer. Loewenstein, G. (1994). The psychology of curiosity: A review and reinterpretation. Psychological Bulletin, 116(1), 75. Mackendrick, N. (2014). More work for mother: Chemical body burdens as a maternal responsibility. Gender & Society, 28(5), 705–728. Mackendrick, N. (2015). Protecting ourselves from chemicals: A study of gender and precautionary consumption. In D.N. Scott (Ed.), Our chemical selves: Gender, toxics, and environmental health (pp.58–77). Vancouver: UBC Press. Mastroianni, A. C., & Kahn, J. P. (2002). Risk and responsibility: Ethics, Grimes v Kennedy Krieger, and public health research involving children. American Journal of Public Health, 92(7), 1073–1076. McKelvey, W., Brody, J.G., Aschengrau, A., & Swartz, C.H. (2004). Association between residence on Cape Cod, Massachusetts, and breast cancer. Annals of Epidemiology, 14(2), 89–94. Mind Disrupted. (2017). About the report. Available: http://minddisrupted.org/about.php. Accessed 10 Oct 2017. Minkler, M., & Wallerstein, N. (Eds.). (2008). Community-based participatory research for health: From process to outcomes. San Francisco: Jossey-Bass. Morello-Frosch, R., Brody, J.G., Brown, P., Altman, R.G., Rudel, R.A., & Pérez, C. (2009). Toxic ignorance and right-to-know in biomonitoring results communication: A survey of scientists and study participants. Environmental Health, 8(1), 6. Morgan, M., Fischhoff, B., Bostrom, A., & Atman, C. (2002). Risk communication: A mental models approach. Cambridge: Cambridge University Press. National Research Council. (1989). Improving risk communication, report of the committee on risk perception and communication, commission on Behavioural and social sciences and education, National Research Council. Washington, DC: National Academy Press. Nelson, J.W., Scammell, M.K., Altman, R.G., Webster, T.F., & Ozonoff, D.M. (2009). A new spin on research translation: The Boston consensus conference on human biomonitoring. Environmental Health Perspectives, 117(4), 495–499. Ohayon, J. L., Cousins, E., Brown, P., Morello-Frosch, R., & Brody, J. G. (2017). Researcher and institutional review board perspectives on the benefits and challenges of reporting back biomonitoring and environmental exposure results. Environmental Research, 153, 140–149. O'Rourke, D. (2005). Market movements: Nongovernmental organization strategies to influence global production and consumption. Journal of Industrial Ecology, 9(1–2), 115–128. Quandt, S. A., Doran, A. M., Rao, P., Hoppin, J. A., Snively, B. M., & Arcury, T. A. (2004). Reporting pesticide assessment results to farmworker families: Development, implementation, and evaluation of a risk communication strategy. Environmental Health Perspectives, 112(5), 636. Quigley, D. (2012). Applying bioethical principles to place-based communities and cultural group protections: The case of biomonitoring results communication. The Journal of Law, Medicine & Ethics, 40(2), 348–358. Ramirez-Andreotta, M.D., Brody, J.G., Lothrop, N., Loh, M., Beamer, P.I., & Brown, P. (2016). Reporting back environmental exposure data and free choice learning. Environmental Health, 15(1), 2. Rudel, R. A., Camann, D. E., Spengler, J. D., Korn, L. R., & Brody, J. G. (2003). Phthalates, alkylphenols, pesticides, polybrominated diphenyl ethers, and other endocrine-disrupting compounds in indoor air and dust. Environmental Science & Technology, 37(20), 4543–4553.

6 Returning Chemical Exposure Results toIndividuals andCommunities

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Rudel, R.A., Seryak, L.M., & Brody, J.G. (2008). PCB-containing wood floor finish is a likely source of elevated PCBs in residents' blood, household air and dust: A case study of exposure. Environmental Health, 7, 2. Rudel, R.A., Dodson, R.E., Perovich, L.J., Morello-Frosch, R., Camann, D.E., Zuniga, M.M., et al. (2010). Semivolatile endocrine-disrupting compounds in paired indoor and outdoor air in two northern California communities. Environmental Science & Technology, 44(17), 6583–6590. Rudel, R.A., Gray, J.M., Engel, C.L., Rawsthorne, T.W., Dodson, R.E., Ackerman, J.M., etal. (2011). Food packaging and bisphenol A and bis(2-ethyhexyl) phthalate exposure: Findings from a dietary intervention. Environmental Health Perspectives, 119(7), 914–920. SACHRP (Secretary’s Advisory Committee on Human Research Protections). (2016). Attachment B: Return of individual research results in July 21, 2016 SACHRP Letter to the HHS Secretary.U.S.Department of health and human services. Saxton, D. I., Brown, P., Seguinot-Medina, S., Eckstein, L., Carpenter, D. O., Miller, P., et al. (2015). Environmental health and justice and the right to research: Institutional review board denials of community-based chemical biomonitoring of breast milk. Environmental Health, 14(1), 90. Silent Spring Institute. (2017). MyCHDSReport. Available: http://45.33.82.210/. Accessed 18 October 2017. State of California Senate. (2006). California environmental contaminant biomonitoring program (Senate Bill No. 1379). California Health and Safety Code § 105440–105444. UNEP/WHO. (2013). State of the science of endocrine disrupting chemicals - 2012. Geneva: United Nations Environment Programme and the World Health Organization. Wu, N., McClean, M.D., Brown, P., Aschengrau, A., & Webster, T.F. (2009). Participant experiences in a breastmilk biomonitoring study: A qualitative assessment. Environmental Health, 8, 4. Zikmund-Fisher, B.J., Turkelson, A., Franzblau, A., Diebol, J.K., Allerton, L.A., & Parker, E.A. (2013). The effect of misunderstanding the chemical properties of environmental contaminants on exposure beliefs: A case involving dioxins. Science of the Total Environment, 447, 293–300. Zota, A.R., Rudel, R.A., Morello-Frosch, R.A., & Brody, J.G. (2008). Elevated house dust and serum concentrations of PBDEs in California: Unintended consequences of furniture flammability standards? Environmental Science & Technology, 42(21), 8158–8164. Zota, A.R., Singla, V., Adamkiewicz, G., Mitro, S.D., & Dodson, R.E. (2017). Reducing chemical exposures at home: Opportunities for action. Journal of Epidemiology and Community Health, 71(9), 937–940.

Chapter 7

Strengthening Environmental Health LiteracyThrough Precollege STEM andEnvironmental Health Education Nancy P.Moreno

Abstract High quality science, technology, engineering and mathematics (STEM) education provides a strong foundation for developing the environmental health literacy of students in grades pre-Kindergarten through 12 (pK-12). STEM learning inside and out of school develops the critical thinking, communications and numeracy skills, along with deep knowledge of systems and processes, that are necessary for the informed evaluation and use of environmental health information in everyday life. Keywords Problem-based learning · STEM education · Environmental health education · Teaching · Teacher · Curriculum · Interdisciplinary · Precollege · Afterschool · Grades K–12 STEM (science, technology, engineering and mathematics) learning experiencesdevelop foundational knowledge and skills that supportenvironmental health literacyof students in grades pre-Kindergarten through 12 (pK-12). STEM educational programs, however, do not necessarily address environmental health topics, nor do they explicitly require students to apply critical thinking and problem-solving skills to health- or environmental health-related challenges. Across the landscape of STEM teaching and learning for precollege youth, there is room for more environmental health content and examples in all aspects of program and curriculum design and delivery. Many current approaches shortchange students in terms of building their understandings of how human health and quality of life are inextricably linked with local and global environmental processes and systems. This deficit represents a missed opportunity, because topics that are personally relevant to students, such as asthma resulting from indoor air pollution, can be powerful catalysts for the development of a range of STEM-related knowledge and skills, including aspects of environmental health literacy.

N. P. Moreno (*) Baylor College of Medicine, Houston, TX, USA e-mail: [emailprotected] © The Author(s) 2019 S. Finn, L. R. O’Fallon (eds.), Environmental Health Literacy, https://doi.org/10.1007/978-3-319-94108-0_7

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When environmental health concepts explicitly are woven into STEM education, teachers and students increase their knowledge of complex environments and ecosystems, sources and applications of environmental health information, individual variability in disease susceptibility and informed approaches to decision-making. These key science and health understandings form part of the framework of environmental health literacy and contribute to improvements in the health outcomes overall for individuals and communities (Finn and O’Fallon 2017). Environmental health content and examples are an obvious fit for science classes. By focusing on human-induced changes in indoor and outdoor environments and how these changes affect disease risk factors, teachers can make abstract concepts related to microorganisms, climate or earth systems immediately relevant to students’ everyday experiences. Since environmental health also is part of the larger fabric of STEM education, examples based on safe drinking water, pesticide presence in foods or extreme weather, for example, can enrich instruction in any of the STEM areas across all grade levels while also raising students’ environmental health literacy. STEM learning, including experiences related to environmental health literacy, takes place inside and outside the classroom (see Chap. 12). Research internships in universities, government agencies, communities and private companies enable students to participate in science investigations or engineering design experiences, and give students a taste of possible future careers. Other opportunities exist through afterschool programs, and informal out-of-school programs at museums, science centers, and youth organizations, to name a few. Teachers also benefit from these programs, in addition to reaping rewards from ones that specifically aim to increase teachers’ disciplinary knowledge or teaching repertoire. Most successful educational approaches for any of the STEM fields, can be adapted and applied in the context of building environmental health knowledge and skills–and ultimately, literacy across a range of environmental health concerns. This chapter examines STEM education and its relationship to development of environmental health literacy, current approaches to teaching STEM using examples from environmental health, strategies for stimulating student interest and learning, and STEM education models and programs that have used environmental health themes to foster related literacy skills of students and their teachers. These topics are presented with the aim of inspiring the application of models from across the spectrum of best practices in STEM education to the development of students’ environmental health literacy.

hat Is Science, Technology, Engineering andMathematics W Education? The acronym STEM (science, technology, engineering and mathematics) became common in the 1990s through applications in a variety of contexts at the National Science Foundation (Bybee 2010a). In practice, “STEM education,” frequently is

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applied to educational programs, interventions, teaching activities or curriculum resources that involve any of the four component subject areas. However, STEM also can be thought of as a meta-discipline that combines elements of all four of the constituent subject areas. It is difficult to find agreement on a single meaning of STEM education. The following definition provides a starting point and reflects many current practices (Tsupros etal. 2009; Brown etal. 2011): STEM education is an interdisciplinary approach to teaching and learning in which science, technology, engineering and mathematics concepts and skills are presented or taught holistically, without separating discipline-specific content, and make connections among individuals, school, community and the world through authentic problems or topics. When used in this sense, STEM education implies the use of active, problem- solving approaches to learning, rather than traditional teacher-centered instruction in which students are passive recipients of information from textbooks or lectures. Effective STEM education immerses students deeply in a topic and develops a range of critical thinking, collaborative and communications skills that are essential components of environmental health literacy, even when the skills are not developed in the explicit context of environmental health competencies. Importantly, an interdisciplinary STEM approach prepares students to be informed citizens and consumers, who can make sense of information and healthy decisions for themselves, their families and their communities. This approach is compatible with, and supportive of, the development of environmental health literacy. The recent adaptation of Bloom’s taxonomy as a construct for six educational stages of environmental health literacy, building from recognition to new applications of knowledge, highlights the overlap of STEM education and development of students’ environmental health literacy (Finn and O’Fallon 2017). In both contexts, it is important for students to be able to develop knowledge, skills and understandings that apply in everyday life. Thus, a STEM-literate individual is able to evaluate the quality of science or health information in social media posts, accurately estimate risks associated with behaviors or exposures, and interpret and apply information to make informed decisions for her- or himself, a family or the community (NAS 1996). The skills taught in the STEM disciplines are particularly critical, because health topics, including environmental health, sometimes are left out of STEM teaching and learning in both formal and informal settings. Thus, students must be able to apply the same problem-solving and analytical skills in the potentially unfamiliar context of environmental health. Ecology and earth systems figure prominently in most state and national standards, for example, but required teaching standards vary in the degree to which they cover risks, health impacts of environmental change or health-related decision-making. In many cases, it is up to the teacher to provide examples of how a particular science topic relates to health. For example, lessons for third grade students on weather-related hazards, could be expanded in various ways to include grade-level appropriate environmental health concepts. These ideas might include exploring how flooding leads to health risks from water- and mosquito-borne diseases or

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chemical contaminants, or how sun screen and other protections shield against damaging UV radiation in warm, sunny climates. The challenge for teachers is locate appropriate reference materials or lessons to make these connections, and to weave these ideas into the content they are required to cover. One way to support teachers in these tasks is to strengthen their own environmental health literacy through professional development related to the environmental science, earth and space science, nutrition and other topics. In addition, the general development of teachers and their students as critical thinkers with strong baseline STEM knowledge, will take them well along the road toward environmental health literacy.

A New View forScience andSTEM Education Expectations of STEM learning have changed over time. In this section, we explore how the current vision for STEM education began more than 20 years ago. The discussion is relevant to the teaching of environmental health literacy, because many of the same competencies and kinds of disciplinary knowledge are needed both for literacy in environmental health and STEM. In the 1990s, low performance of United States students on international assessments of science and mathematics learning, as compared to students in other nations, caused growing consternation among educators and policy makers. Analysis of fourth and eighth grade student achievement from the 1996 Third International Mathematics and Science Study (TIMSS) (Beaton etal. 1996a, b) led to the characterization of US curricula in both subject areas as being “a mile wide and an inch deep,” with few opportunities for students to develop conceptual understanding (Schmidt etal. 2002). Access to high quality teachers and well-designed curricula also were identified as essential for effective learning by students. Shortly thereafter, international assessments of 15-year-old students in 57 countries by the Programme for International Student Assessment (PISA) found US students placing below the international average in scientific literacy. The test examined students’ capabilities to explain scientific phenomena and apply scientific knowledge, in addition to assessing for science knowledge, applying science in range of contexts (including health, resources, environments, hazards and frontiers of science and technology) and attitudes (OECD 2007). These outcomes fueled an already ongoing national dialogue about how to teach science more effectively (Bybee 2010b). These concerns about general “science literacy,” parallel the gradual identification of knowledge and skills that contribute to environmental health literacy, as discussed throughout this volume. Concerns about workforce development also drove interest in the quality of STEM education. US students were enrolling in STEM degree programs in lower numbers than students in other countries that compete against American companies in the global economy. Development of a highly capable STEM workforce for the twenty-first Century was viewed as essential for the continued vitality of the US economy (Committee on Prospering in the Global Economy 2007). Consequently,

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STEM literacy and skills development by future workers and citizens became not only educational imperatives, but were identified as crucial to maintaining national prosperity and security. Key initiatives by the American Association for the Advancement of Science (AAAS) and the National Academies already were underway by the time results from the TIMMS and PISA studies were communicated widely. Both organizations spearheaded complementary, multidisciplinary programs to develop a new vision for STEM education by focusing deeply on fewer topics and systems, and engaging students in authentic scientific processes of inquiry. Project 2061 developed by AAAS advocated for STEM literacy for all and outlined an ambitious agenda in Science for All Americans (Rutherford and Ahlgren 1991). The project recommendations focused on the science learning needs of all children and emphasized that “race, language, sex or economic circ*mstances must no longer be permitted to be factors in determining who does and who does not receive a good education in science, mathematics and technology” (Rutherford and Ahlgren 1991, Chap. 14). Subsequently, AAAS released a comprehensive set of learning outcomes, Benchmarks for Science Literacy, for students of all grade levels encompassing the nature of science, mathematics and technology, physical setting, living environments, the human organism, human society, the designed world, the mathematical world, historical perspectives, common themes and habits of mind (AAAS 1993). The National Academies concurrently developed a set of National Science Education Standards (NAS 1996) that encompasses not only learning goals for students, but standards for science teaching, professional development for teachers of science, assessment, science content, science education programs and sciences education systems. Importantly, the Standards offered a new vision for STEM learning by asserting that all students, not just those who are aiming for science careers, should have opportunities to learn science by engaging in authentic scientific practices, in other words, inquiry. The call to action issued in 1996 by the Standards continues to ring true today in a world in which science and environmental health illiteracies paralyze the discussion on key issues, such as global climate change, vaccination and genetically modified organisms. In today’s milieu, environmental health literacy should be considered a key component of general science and STEM literacy. In a world filled with the products of scientific inquiry, scientific literacy has become a necessity for everyone. Everyone needs to use scientific information to make choices that arise every day. Everyone needs to be able to engage intelligently in public discourse and debate about important issues that involve science and technology. National Science Education Standards, p1.

Both the Benchmarks for Science Literacy and the National Science Education Standards included fundamental health concepts in their expectations for student learning. The Standards proposed Content Standards on Science in Personal and Social Perspectives as part of the science curriculum. This subset of standards

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covered many aspects of human health and disease, and outlined environmental health themes such as the following. • Grades K–4 (Changes in Environments): Changes in environments can be natural or influenced by humans. Some changes are good, some are bad, and some are neither good nor bad. Pollution is a change in the environment that can influence the health, survival or activities of organisms, including humans. • Grades 5–8 (Risks and Benefits): Risk analysis considers the type of hazard and estimates the number of people that might be exposed and the number likely to suffer consequences. The results are used to determine the options for reducing or eliminating risks. • Grades 9–12 (Science and Technology in Local, National, and Global Challenges): Humans have a major effect on other species. For example, the influence of humans on other organisms occurs through land use–which decreases space available to other species–and pollution–which changes the chemical composition of air, soil, and water. The Benchmarks for Science Literacy included sections on The Human Organism, Human Society, The Designed World and The Nature of Technology. These sections touched on themes that are consistent with a broad range of environmental health topics, such as population growth, trade-offs and decision-making, energy uses and applications of technology to solve human problems. Teaching these topics in the context of inquiry and problem-solving are aligned with and support the development of students’ literacy in environmental health. Importantly, both documents continue to serve as useful guides about ways to integrate STEM topics into instruction in science and other classes. Many state education standards and assessment guidelines for science still are based on the approaches and concepts outlined in these initial sets of recommendations, particularly those of the National Science Education Standards (NAS 1996). Thus, teachers and instructional designers can continue to use the Benchmarks for Science Literacy and the National Science Education Standards as resources to identify grade levels and science disciplines where they can insert environmental health examples or problems into ongoing instruction for students. The National Science Education Standards and Benchmarks specifically targeted science teaching and learning, with connections to mathematics and technology. These documents, however, made little mention of the importance of engineering design, practices and problem-solving to modern life, nor did they reflect research that was emerging on the science of learning. Two influential publications, A Framework for K-12 Science Education (National Research Council 2012) and the Next Generation Science Standards (NGSS) (NGSS Lead States 2013) incorporated this information into an updated vision for STEM learning. Importantly, the Next Generation Science Standards explicitly call out key understandings, major ideas that cut across all sciences, and essential skills that are needed for fluency in science. Not surprisingly, as outlined in the next section, these components include knowledge and skills essential for environmental health literacy.

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ext Generation Science Standards andEnvironmental N Health The Next Generation Science Standards (NGSS) (NGSS Lead States 2013) expanded upon earlier recommendations and incorporated new research on how people learn into a detailed set of educational outcomes for students in grades K-12(Bransford etal. 2000). Development of the NGSS followed a set of guiding principles and key understandings related to preparing students for future careers and as educated citizens. These guiding principles are outlined below (National Research Council 2012, pp.24–25). • Children are born investigators. Children naturally seek to understand and influence the world around them, and their early ideas about how things work can be used as foundation for teaching science. • Focusing on core ideas and practices. A framework for science learning should focus on key (or, core) ideas, and on the basic practices and approaches used by scientists and engineers in the real world. • Understanding develops over time. Core ideas should be developed over time through learning progressions, which provide instructional supports to help students make progress toward mastery. • Science and engineering require both knowledge and practice. Scientists use inquiry and problem-solving approaches to develop explanations and predict future outcomes. Engineers aim to solve problems related to a human problem or need. • Connecting to students’ interest and experiences. Science learning should connect to students’ everyday lives, and link to future potential careers. • Promoting equity. All students should have access to quality teaching, resources and time to learn science effectively, and engage in activities that inspire further participation in science. The same guiding principles apply to the teaching of environmental health concepts at any grade level, because they reflect current understandings of how students learn STEM and prepare for employment. Importantly, the NGSS document offers various entry points for environmental health science content into K–12 science teaching, because it provides student learning outcomes by grade level within a framework of three different strands or “dimensions” of science learning. The dimensions, which are Practices, Crosscutting Concepts and Disciplinary Core Ideas, reflect not only essential science knowledge, but the ways in which scientists and engineers solve problems and seek explanations. Practices refer to the approaches used by scientists or engineers to answer a question or solve a problem. Crosscutting Concepts are themes with broad applicability across all sciences, such as patterns in the natural world, energy and matter, or cause and effect. Disciplinary Core Ideas are major science ideas that build sequentially as students’ progress through school Table7.1.

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Table 7.1 Dimensions of the Next Generation Science Standards(NGSS Lead States 2013) Dimension 1: Practices Describes eight major practices used by scientists to investigate, and build models and theories about the world; and key engineering practices used by engineers to design and build systems. 1.Asking questions and defining problems 2.Developing and using models 3.Planning and carrying out investigations 4.Analyzing and interpreting data 5.Using mathematics and computational thinking 6.Constructing explanations and designing solutions 7.Engaging in argument from evidence 8.Obtaining, evaluating, and communicating information Students are expected to participate in these practices, NOT learn about them secondhand through lectures or reading from textbooks. Dimension 2: Crosscutting Concepts Consists of seven unifying processes and ideas, which are common themes across all domains of science: patterns; cause and effect; scale, proportion, and quantity; systems and system models; energy and matter in systems; structure and function; and stability and change of systems. Concepts are intended to help students make sense of disciplinary content across grade levels and promote systems thinking. Dimension 3: Disciplinary Core Ideas Set of essential ideas from four major domains: physical sciences; life sciences; earth and space science; and engineering, technology and applications of science. Core ideas meet at least two (and usually three or all four) of the following criteria. 1.Have broad importance across multiple sciences or engineering disciplines or be a key organizing principle of a single discipline. 2.Provide a key tool for understanding or investigating more complex ideas and solving problems. 3.Relate to the interests and life experiences of students or be connected to societal or personal concerns that require scientific or technological knowledge. 4.Be teachable and learnable over multiple grades at increasing levels of depth and sophistication. That is, the idea can be made accessible to younger students but is broad enough to sustain continued investigation over years.

Like the National Science Education Standards, the NGSS Practices, Crosscutting Concepts and Disciplinary Core Ideas do not constitute curricula or lessons. Instead they reflect what a student should know or be able to do. Our current understanding of environmental health literacy is that it also relates to stages of knowing as well as to action. Thus, the three NGSS dimensions apply equally to the development of environmental health literacy. Just as the concepts contained within the NGSS are intended to build progressively and coherently across grades K–12, while focusing on building deep understanding of science content and processes–so should students have opportunities to develop concurrent skills and understandings related to the environment and impacts on health in the context of core ideas that are taught with increasing depth over years.

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Importantly, all three dimensions of the NGSS standards are nested under performance expectations, which outline how students should demonstrate their skills and understandings at different grade levels. The performance expectations provide a coherent story line to guide curriculum planning. For example, students in grade four are expected to “obtain and combine information to describe that energy and fuels are derived from natural resources and that their uses affect the environment” (4-ESS3-1). This performance expectation provides teaching opportunities related to the practices of obtaining evaluating and communicating information, and constructing explanations and designing solutions. It encompasses core ideas related to national resources and natural hazards–in addition to the crosscutting concept of cause and effect. This example does not directly link environmental impacts to health concerns. In this case, it would be up to the classroom teacher to extend her or his teaching to explore health impacts of fossil fuel induced air pollution or worldwide changes in global climate. The performance expectation provides an opening to introduce ideas related environmental health, but the ideas are implicit and rely on the teacher’s own expertise to make the necessary connections. Other sections in the NGSS, however, are more explicit regarding connections to health. A later set of middle school performance expectations focuses on human impacts on climate, earth systems and local environments. Students are expected to “apply scientific principles to design methods for monitoring and minimizing a human impact on the environment” (MS-ESS3-3) and “construct an argument supported by evidence for how increases in human population and per-capita consumption of natural resources impact Earth’s systems” (MS-ESS3-3). Importantly, these explanations and design challenges are linked explicitly to society, “all human activity draws on natural resources and has both short- and long-term consequences, positive as well as negative, for the health of people and the natural environment” (MS-ESSe-4). The notion of weighing benefits and risks is clear in this expectation for middle school students and contributes directly to the development of environmental health literacy. These two examples illustrate the challenge of leveraging NGSS recommendations to raise environmental health literacy of students and their teachers. In the second example, the connections between health and environment, risk and consequences are made explicit for teachers, curriculum designers and textbook publishers–and we have some assurance that essential linkages to human health will find their way into teaching. In the first example, however, a teacher might focus on how production and use of fossil fuels affect the global carbon cycle or influence climate change, without exploring how these practices and outcomes impact water supplies, crops, patterns of disease or cancer risk. This knowledge gap can only be filled by providing needed information to teachers through professional development, by promoting the use of curricular materials and resources that make the connections for them, through partnerships with science organizations or individual science and health professionals and developing connections with textbook publishers and curriculum developers. The NGSS recommend that students actively develop and practice a range of skills and be able to demonstrate the depth of their understanding. This represents

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another formidable challenge for educators. Active learning implies involvement of students in experimentation and inquiry, engagement with data and other opportunities to construct their own knowledge. These approaches are not necessarily part of K–12 science teaching, which still sometimes relies on textbooks and multiple- choice tests. Achieving the vision of the NGSS and improving US science (and STEM) education will therefore require large-scale involvement of teachers in existing or new professional development programs, as well as consistent instruction in similar teaching approaches as part of undergraduate and graduate K–12 teacher preparation and certification programs. In addition, when teachers are weaving environmental health concepts into STEM lessons or units, they must reach beyond expectations of state or national standards to include ideas related to individual susceptibilities, environmental exposures and risk. Even though these topics link naturally to disciplinary core ideas, such as genetics and human impacts on the environment, the connections are not laid out explicitly for teachers. Thus, supplementary curriculum programs and teacher professional development become essential if teachers are to embed environmental health concepts into their ongoing science or other STEM instruction with the aim of developing students as citizens who are literate across a range environmental health topics and concerns.

Integration across Subject Areas The Next Generation Science Standards (NGSS Lead States 2013) and preceding standards focus on STEM education. However, science is only one aspect of the complex set of requirements related to teaching and instruction that vary from state to state. Responsibilities for interpreting and implementing required or recommended standards lie with state, county or city education agencies, districts, schools, administrators, curriculum specialists and individual teachers. Science topics typically compete for instructional time with other required areas of instruction such as reading/language arts, mathematics or social science. One approach to managing a crowded school day is to combine or integrate two or more subjects into the same lesson. Integrating science teaching with reading or social studies, for example, enables teachers or schools to meet both sets of standards for student learning simultaneously. Examples provided later in this chapter demonstrate the practicality and value of this approach, which is particularly viable for elementary school teachers. Many elementary teachers still teach all subjects to the same group of students, so using environmental health themes to integrate reading/ language arts, science and mathematics represents an efficient way to address required education standards as well as introduce knowledge and develop skills needed for environmental health literacy. Ultimately, individual classroom teachers are charged with delivering the educational experience to students. This instruction does not happen in isolation. Instead, teachers daily navigate a complex landscape of layered requirements and regulations, while handling issues such as large class sizes, family factors like income,

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language or caregiver status, violence or student health. Thus, any discussion of how to provide science or other STEM learning experiences to students must also be sensitive to community, school and social concerns. These same concerns, however, provide another entry point for discussing and teaching about environmental issues in the contexts of health and social justice. Because of its immediate connections to individuals and populations, environmental health provides a context for using local events and news as the basis for case- based learning, student research projects or in-class activities. These kinds of learning activities develop both science disciplinary knowledge and literacy in environmental health. Helping students identify and understand health risks and hazards in their own communities can contribute to better decisions for their own health and that of their families, in addition to promoting informed advocacy, which are key elements of environmental health literacy (White etal. 2014). Most teachers, however, do not have sufficient time or adequate resources to develop detailed and scientifically rich cases or interactive activities for students. Instead, they often rely on curriculum models and teaching materials created by university-based or commercial developers to be able to provide instruction on environmental health (or any other specialized science topic). Helping teachers find and learn how to use these materials, however, remains a challenge across all STEM fields. Stakeholders must continue to focus on dissemination and engagement with educators at all levels to encourage use of environmental health topics as vehicles for STEM teaching and learning. In addition, new materials that meet the latest state education standards and recommendations of the NGSS while developing students’ environmental health literacy are needed. Many schools still adhere to traditional scheduling with 50-minute (or so) class periods, which are not conducive to student investigations or laboratory experiences. Grades K–5 offer more opportunities for integrated approaches to STEM education, because many teachers still teach the same students throughout the entire day in self-contained classrooms. Or, when elementary teachers specialize in teaching one subject area, such as reading, they are more likely to collaborate with other team members and coordinate instruction. STEM topics, including environmental health, are suitable themes for integration into formal elementary classrooms. In addition, elementary teachers focus much of their efforts on building students’ skills in reading and English language arts. This emphasis on communication provides a natural opening for developing skills necessary for environmental health literacy. Examples of these cross-over communications and analytical skills include inquiry and literature research, argumentation, and integration of information from oral, visual, quantitative, and media sources. One framework that has guided a number of curriculum and teacher professional development programs is the Environment as an Integrating Context (EIC) model. This model uses locally relevant environmental issues as unifying themes to create seamless instruction across several subject areas. The EIC approach offers a solution to teachers who would like to expand their teaching beyond the traditional fragmented approach to teaching the STEM disciplines. The model has been implemented in a variety of settings and has inspired several curriculum programs.

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Without guidance, it can be difficult for teachers to integrate content and instruction across disciplinary boundaries during the school day on their own. Teachers may lack specialized science knowledge, access to appropriate lessons or experience with leading student inquiry. The EIC model addresses these challenges and, also contributes to development of teachers’ own environmental health literacy by immersing them in the study of local environmental challenges along with their students. EIC is aligned with current standards, such as the NGSS, and is based on six key educational strategies (Lieberman 2013): • Integrated interdisciplinary instruction that crosses traditional boundaries among disciplines; • Community-based investigations as learning experiences for students, through activities, investigations or service learning; • Collaborative instruction shared by teachers, students and community members; • Learner-centered approaches to teaching, in which the teacher acts as a facilitator and students have opportunities to construct their own knowledge and develop skills; • Combinations of independent and cooperative learning; • Local and natural community surroundings as the “context” for teaching and learning. The EIC model has been shown to promote science learning by students from a wide range of backgrounds using a range of implementation strategies from individual teacher-developed units to large scale curriculum development and implementation projects (Lieberman and Hoody 1998). Improvements are reported in student academic achievement related to state standards, engagement of students in instruction and readiness for post-secondary education or careers–when classroom teaching is integrated around environmental themes (Lieberman 2013). The potential for increased student engagement is a particularly valuable aspect of the EIC model and other curricular modalities that let students explore pertinent community-based issues. Many students fail to keep up in school because they do not perceive their studies as relevant, nor do they have exposure to professional role models or mentors. EIC is activity- and inquiry-based, and helps students and teachers cross traditional boundaries between disciplines. Results of EIC-based instruction were documented in 40 schools across the US. The study team found that environmental settings encompassed by EIC programs spanned across classrooms, laboratories, developed areas of school campuses, undeveloped school properties, and even off-site study areas. Students in 36 of the 40 study schools outperformed traditional students in reading, writing, mathematics, science and social studies (Leiberman and Hoody 1998). The EIC approach has clear benefits for improving the environmental health literacy of both teachers and students.

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The EIC model was a foundation for nine environmental health education projects funded by the National Institute of Environmental Health Science (NIEHS) beginning in 2000 under its Environment Health Science as an Integrated Context (EHSIC) for Learning program. The initiative built on previous funding opportunities by the same agency for the development of teaching materials on environmental health for students in grades K-12 and related teacher professional development. The EHSIC-funded projects applied EIC principles to a range of integrated educational curricular approaches and collectively produced more than eighty individual educational units (NIEHS 2017). Some of this work has been continued and extended through many of the Community Engagement Cores at the various Centers funded by NIEHS. Outcomes from NIEHS-funded projects demonstrated that integrating science instruction around environmental health sciences themes increased students’ knowledge of environmental health or toxicology concepts, such as dose-response, risk assessment or carcinogens–while learning life and physical science, as well as deepening their mathematics, language and social science knowledge. Although the term, environmental health literacy, was not used at that time, these outcomes clearly demonstrate the value of the integrative approach to building pertinent skills and understandings (Hursh etal. 2011). Three examples from the funded projects are described below. • Under the Environment as a Context for Opportunities in Schools (ECOS) project, scientists and educators at Baylor College of Medicine developed and piloted integrated instructional units focused on food production and safety, water pollution, indoor air pollution and global atmospheric change with elementary school students. The units consist of adventure storybooks, guided science and health investigations (designed to be taught during science class), related language arts activities and mathematics exercises. A study of second grade students in three urban schools found that students’ content knowledge of science concepts related to photosynthesis and plant growth, food use by organisms, food chains, nutrition and food safety increased statistically significantly, after completion of the first edition of the integrated unit entitled, The Science of Food (Moreno and Tharp 2011). In addition, students’ open-ended writing samples provided evidence of improved use of science vocabulary words in context, and more detailed descriptions of scientific processes, such as “cause and effect.” (Moreno etal. 2006). • The Hydroville curriculum developed at Oregon State University for high school students aims to enhance students’ science content knowledge, their inquiry capacity and disciplinary literacy (reading, writing and speaking in the context of science) and awareness of environmental health issues (Oregon State University 2017). The Hydroville Water Quality module, for example, engages students in finding the source of water contamination impacting an imaginary town. Using a quasi-experimental design, the problem-based module was compared to a more traditional approach, with different classes of students. The students using the integrated problem-based curriculum performed better than the comparison

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group in terms of posing scientific questions, and generating hypothesis-drive approaches to investigate their questions. In addition, the students in the problem- based group increased their content knowledge statistically significantly from pretest to posttest over a ten-week period (Kang etal. 2012). • The ToxRap™ project at the University of Medicine and Dentistry of New Jersey focuses on grades K-9 with a cross-curricular approach based on concepts from toxicology and environmental health risk assessment. Units for different grade level bands enable students to identify a problem, gather information, form a hypothesis, conduct experiments, collect and analyze data and formulate and communicate their conclusions. The program has been disseminated to 23 states, and actively is used with students through Environmental Health Science Centers, such as the ones at University of Arizona and Oregon State University.

est Practices forTeaching andStudent Engagement B inSTEM How students learn science is an ongoing area of investigation–and discussion–for all grades and educational levels, including undergraduate and graduate or professional training. The previous examples, which used environmental health themes as the basis for integrated instruction, all provided evidence in support of active learning by students. In these models, teachers are facilitators of student science learning, rather than instructors at the front of the classroom. However, traditional teacher-directed instruction–in which teachers transmit information and students are relatively passive recipients–continues in many classrooms from elementary school through advanced programs in science, engineering or medicine. Long lectures, student memorization, and rote homework generally are less effective than experiences in which students are asked to challenge their own misconceptions, make meaning of new information or observations and reflect on their experiences (NRC 2000). Nonetheless, the teacher as “teller,” still prevails as the model of teaching STEM disciplines in many settings, despite growing evidence to the contrary regarding its effectiveness as an instructional model (Freeman etal. 2014). Impactful approaches to STEM learning immerse students in significant content and questions–a process that leads to deep understanding of content and development of a range of critical thinking and problem-solving skills. Teaching situations, in which students build knowledge through questioning, problem-solving, and personal experiences are characterized as constructivist. Constructivist pedagogy has its roots in psychological theories of learning, which suggest that learners build meaning around observable phenomena and that the actual construction of new knowledge depends on prior experience or background, and the learner’s existing knowledge or misconceptions (Richardson 2003; NRC 2000). Using environmental health themes as the basis for student investigations, as advocated by the EIC model, is aligned with constructivist approaches for STEM learning.

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Another way to think about STEM teaching and learning is by looking at whether the teacher or the student actively is participating in the process, or “doing the work.” Strategies in which the teacher provides information through lectures or other didactic approaches to students, who are limited to note-taking or answering occasional questions, are considered “teacher-centered.” Contrast this approach to a “learner-centered” active process, which requires students to work in small groups, solve problems, and share ideas with peers or the class. Learner-centered instruction gives value to the various backgrounds, perspectives, learning needs and interests that individual students bring to the educational process (McCombs and Miller 2007, p16). Learner-centered instruction, as noted above, also is “constructivist,” because students are building and applying knowledge. “The one who does the work does the learning.” (Doyle 2011, p7)

Hursh etal. (2011) offers a simple example of a constructivist approach to teaching environmental health. Students are presented with a problem–well water with a foul smell. They investigate and gather information from reliable sources, such as the US Environmental Protection Agency, to examine possible causes of the odor and potential risks from different possible contaminants, such as pesticides. Finally, students come up with an explanation for the offensive odor, and propose policy changes and an educational component to inform the fictional community. All of this is conducted in the context of a realistic scenario originating from a fictional letter from a community member. Through immersion in the problem, students learn key environmental health and science concepts–related to water chemistry, common pollutants, health impacts, and risk–because they need to apply the information to solve the mystery. They also learn how to find and evaluate scientific information, developteamwork competencies, and improve their written and oral communication and presentation skills. In other words, their environmental health literacy is strengthened. They have gone from the simple understanding of an environmental health concept to the application of that knowledge. Aligning science and STEM teaching to the NGSS recommendations requires shifting away from the traditional approaches, already mentioned, that rely on textbooks, lectures, worksheets and memorization. Instead, as in the example above, students are engaged in developing explanations, systems thinking, and conducting investigations or solving problems. These practices also provide opportunities for students to read and write in a variety of contexts, and to engage in teacher-facilitated discussions (NRC 2015b). Effective learner-centered STEM instruction typically includes some or all of the following elements, which can be used to evaluate the quality and potential usefulness of environmental health or other STEM programs and curriculum resources. When selecting or creating a program to develop students’ environmental health literacy in the context of STEM teaching and learning, users or developers should look for the following features.

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• Active learning. Students are immersed in single lessons, cases or significant problems that are drawn from examples in the real world, and have opportunities to use observations, numerical data and other resources to answer questions, conduct investigations, synthesize information and communicate their findings. • Collaborative grouping. Students work in teams, typically of 2–4 students, with assigned roles and responsibilities. These experiences potentially develop desirable workforce skills, such as leadership and written or verbal communication and feedback. • Assessment as part of the learning process. Instead of a single test at the end of a chapter or unit, students self-assess their progress–which helps them take responsibility for the learning process. In addition to grading students, teachers use assessments to tailor or modify instruction to meet individual or group needs. • Attention to students’ misconceptions. Overcoming persistent erroneous beliefs is essential to helping students learn new STEM concepts and skills (NRC 2000). Experienced teachers identify students’ misconceptions about phenomena or processes though assessment and bridge the knowledge gap by providing students’with first hand experiences that promote understanding. • Teachers as facilitators. Teachers serve as coaches and guides, while students actively conduct their own investigations or engage in designing solutions to a problem. • Learning cycle. Students become engaged in a topic through a real-world focus or challenge designed to stimulate their interest, followed by a sequence of learning activities that enable them to explore the idea further, develop explanations, evaluate their knowledge and elaborate or apply the knowledge to a new situation. The 5E learning cycle is a common model: Engage, Explore, Explain, Evaluate and Elaborate (Bybee 2015). • Interdisciplinary approach. Students use technology and mathematics seamlessly with science and engineering problem-solving–in ways that are similar to how STEM professionals address challenges in the workplace. Other subjects, including reading and writing, social studies and health also are integrated into student learning experiences. Learner-centered teaching, based on the features above, is effective using environmental health topics. For example, environmental health scientists and collaborating educators at the University of Wisconsin-Milwaukee have used zebrafish embryos and minnows of other species as model systems for student investigations of the impacts of environmental exposures on health. One module, for example, enables students to learn about normal development and evaluate how various environmental toxicants affect development of zebrafish embryos. The module was evaluated with 37 teachers and more than 850 high school students enrolled in a range of biology and advanced life science courses (such as advanced placement environmental science or anatomy) during 2011–2012 and 2012–2013. Teachers received preparation in environmental health science concepts and the module’s experimental methodology, including care of zebrafish, during a oneweek summer institute. They also received all necessary materials and opportunities

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to interact with the project team during the school year. As part of the module, students gathered and analyzed their own data from control and experimental embryos, and prepared written scientific communications or papers with their findings. The culminating activity was a student science research conference held in the spring with oral and poster presentations. Pre-test/post-test results from student assessments found statistically significant positive changes in students’ opinions about environmental health and questions about environmental toxicants. For example, on the post-test, significantly more students agreed that “Seeing how an environmental agent affects fish helps me understand that those same agents can also affect me” (Tomasiewicz etal. 2014). Another module developed by the same team enables students to investigate how lead exposures affect behaviors of fathead minnows, and contributes to their understanding of negative consequences of chemical exposures (Weber etal. 2013). Chemicals, the Environment, and You is an example of a standards-based curriculum module that follows a learning cycle approach. Students explore the relationships between chemicals in the environment and the health of living organisms, including humans, by progressing through all stages of the 5E model (BSCS 2012; Bybee 2010a). Developed by scientists, including subject area experts from NIEHS, medical experts, educators and curriculum designers, the unit incorporates actual case studies into classroom activities, and consists of six lessons that are mapped to the 5E learning cycle. Students begin their explorations through an “engage” activity in which they learn that everything in the environment is make of chemicals. Next, they “explore” the effects different doses of chemicals on seed growth and are introduced to concepts of toxicology. Further activities in the “explain” and “elaborate” phases further develop students’ knowledge and skills as they use dose- response curves and learn about individual and community exposures to chemicals. In the culminating activity (“evaluate”), students apply what they have learned to solve a fictitious problem in which participants complain of headache and nausea after returning from a museum field trip. After examining evidence from the case, students are able to conclude that carbon monoxide exposure from a faulty exhaust system in the bus used for field trip transportation led to the observed illnesses. This module develops environmental health literacy, because students apply new knowledge and skills to solve problems related to chemical exposures, risk and health impacts on individuals.

The Five E Learning Cycle Model Engage Explore Explain Elaborate Evaluate

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The Science Take-Out project represents a different approach, which removes barriers to teaching environmental health and other science topics by providing simple, low cost kits with all of the materials and instructions to complete a single investigation. The kits are designed for use in situations where access to lab facilities or equipment is limited. Individual kits developed by investigators and educators at the University of Rochester enable teachers to explore important environmental health concepts, such as dose-response relationships, effects of environmental agents on body systems, changes in susceptibility to environmental agents at different life stages, and prevention of environmental exposures. Importantly, Science Take-Out kits have utilized the Small Business Technology Transfer grant mechanism of the National Institute of Environmental Health Sciences and National Institutes of Health to scale-up a research-based curriculum development project into a commercial company that creates, manufactures and markets science teaching materials (URMC 2017). Environmental health and educational expertise for the project is provided by the Community Outreach and Engagement Core (COEC) of the University of Rochester Environmental Health Sciences Center. This innovative model ensures that accurate and up-to-date science and health information is made available in an easy-to-teach format at low cost to teachers and community educators. An even shorter format has been successful for the Sunwise Program, which demonstrates that not all effective environmental health or STEM units require several days or weeks for implementation. The Sunwise Program is an example of a set of successful, environmental health teaching units for different grade level bands that require a minimal time commitment and can be integrated with existing curricula. Developed in 1998 by the Environmental Protection Agency and now distributed by the National Environmental Education Agency, the program aims to educate and children and adult caregivers about health risks associated with UV radiation and how to protect against excessive UV exposure (EPA 2017a). By 2015, the program was estimated to protect against more than 11,000 cases of skin exposure. Between 2000 and 2015, more than 58,000 teachers and 34,000 schools registered for Sunwise and received the downloadable Sunwise Tool Kit to teach students in grades K-8 about the health risks of UV overexposure (EPA 2017b). Use of the program led to statistically significant increases from pretest to posttest in students’ knowledge about sun safety, and some improvements in children’s perceptions of the healthiness of a tan and their intentions to play in the shade (Geller et al. 2003). Widespread implementation of the program is attributed to broad recruitment of schools through teacher and school nurse conferences and organizations, referrals from partner organizations, such as the American Cancer Society and alignment with state and national standards for science and health education. Despite its short duration, the Sunwise Tool kit exemplifies several elements of effective learner-centered STEM instruction. Students are engaged actively in investigations, including use of a UV meter to measure radiation; they work in collaborative groups on a variety of challenges; teachers serve in the roles of facilitators; and the approach is interdisciplinary with numerous linkages to reading, writing, speaking, and applications of technology. Thus, the units achieve both STEM and environmental health literacy goals.

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STEM Teachers andEnvironmental Health Literacy Learner-centered educational approaches require teachers to develop different, and often new, sets of facilitation and classroom management skills. As noted, STEM teaching that is aligned with the NGSS requires teachers to know how to guide independent or small-group work by students. In addition, teachers must possess deep content knowledge, know how to convey complex concepts effectively to students and be able to address common misconceptions (Schulman 1986, 2000). Building this practical knowledge, referred to as pedagogical content knowledge, is an important part of teacher development and is essential for effective STEM education (Van Driel etal. 2001). Given that the US continues to face regional shortages of STEM teachers–and teachers of some subjects, such as physics, chemistry and mathematics, are in perpetual short supply (Marder 2016)–providing professional development to teachers across all of the STEM disciplines remains a priority. In addition, elementary school teachers typically are less prepared to teach science and few of them have deep disciplinary knowledge in STEM or health-related fields. In order to teach environmental health ideas effectively, teachers need background in areas related to chronic and infectious disease, toxicology, risk and common environmental challenges to health related to chemical pollution, animal and insect pests, radiation, noise or climate. In other words, teachers also need to build their own environmental health literacy as a prerequisite to instilling the same knowledge and applicable skills in their students. Professional development programs for teachers who already are employed in school (known as in-service professional development) are especially critical to improving the quality of STEM teaching consistent with the vision of the NGSS.Effective professional development enables teachers to learn new science content, develop experience with hands-on lessons and work with peers to share effective instructional approaches. Sustained programs, rather than single-day workshops, are more effective in building teachers’ content knowledge, skills and beliefs about their abilities as teachers–particularly when the programs provide opportunities for teachers to enact new strategies and reflect on their own teaching (Van Driel and Berry 2012; Roberts etal. 2001). Job-embedded forms of professional development, such as coaching, team- teaching, or lesson study (an approach developed in Japan, in which teachers collaboratively develop, evaluate and revise an actual classroom lesson, called a “research lesson”), also are effective in building discipline-specific teaching skills (pedagogical content knowledge) and science teaching efficacy beliefs (Lewis etal. 2004;Weiss and Pasley 2009). Direct partnering of scientists with teachers, either through summer research experiences or as part of curriculum development, further deepen teachers’ knowledge and enhance their understanding of the scientific enterprise (Moreno 2005; Moreno etal. 2001). Five general characteristics of effective STEM teacher professional development have been identified from the plethora of teacher development options available in

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schools, districts and organizations across US.These approaches are: focusing on specific content to encourage depth of knowledge; engaging teachers in the same active learning modalities they will implement with their students; enabling teachers to work collectively and collaboratively to examine their practices, curricula and planning for improvement; coherence with other school policies and practices; and sufficient duration in terms of intensity and contact hours (Wilson 2013). In general, professional development that extends over multiple sessions during the summer and school year leads to better teacher learning and sustained implementation of new practices. Opportunities to practice new instructional approaches and receive peer feedback also contribute to gradual and enduring changes in classroom instruction. However, results–even from large scale studies of innovative science curriculum programs with intensive teacher professional development are uneven–in terms of the ultimate development of students’ scientific practices and acquisition of deep content knowledge (Grigg etal. 2012). Project EXCITE (Environmental health science eXperiences through Cross- disciplinary and Investigative Team Experiences) is an example of a teacher professional development program that enabled middle school teachers to develop, implement, and revise problem-based, interdisciplinary curricula focusing on locally relevant environmental health issues. The program, conducted by Bowling Green State University, involved 18 middle school teachers in summer institutes and monthly meetings, in addition to collaborating with relevant community agencies, local scientists and education faculty members (Haney etal. 2007). The program exemplifies the characteristics of effective teacher professional development. It engaged teachers in a conceptual model of an environmental health system and promoted development of deep content knowledge through teacher institutes and year-round activities. Teachers were engaged actively in their learning and collaboratively worked to develop and refine problem-based learning modules for students. The program was aligned with local and state standards, and involved teachers over a two-year period. As a result, teachers’ beliefs about their own efficacy in teaching science using constructivist approaches improved. In addition, teacher content knowledge and students’ skills related to science inquiry increased with statistical significance from pre- to post-assessments (Haney etal. 2007). The NIEHS supported Project EXCITE and has funded a wide range of teacher professional development programs conducted by individual organizations or administered by Community Engagement Cores since 1999 (O’Fallon 2017). These programs include: short programs and multi-day workshops either focused on environmental health modules or specific themes; summer institutes; summer research experiences for teachers and distance learning courses. Many of these experiences, such as those conducted by the University of Wisconsin-Milwaukee, are designed to develop teachers’ abilities to use particular curricular materials. Others, such as the Environmental Health Sciences Summer Institute, enable teachers to participate in an extensive variety of professional development workshops focused on the connections between health and the environment over the course of a week. Currently conducted by Texas A&M University Health Science Center, the program provides

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opportunities for teachers to discuss environmental health issues that directly impact people’s lives, participate in hands-on, classroom ready learning activities, share ideas with scientists and professionals, and discover how environmental health curricular materials contribute to student achievement (TAMU 2017). To address shortages of expert teachers within certain subject areas, the UTeach program at the University of Texas-Austin enables students to simultaneously obtain a teaching credential while earning a degree in engineering, science or mathematics. This approach is developing more teachers with formal backgrounds in STEM subject areas. The program has been replicated widely and is available at 44 universities in 12 states. UTeach programs are expected to graduate more than 9000 STEM teachers by 2020 (Backes etal. 2016). While UTeach does not explicitly target environmental health as a disciplinary area, the program is addressing general needs for developing STEM content experts as well-prepared teachers.

Informal andOut-of-School STEM Education Formal education occurs in classroom settings during the regular school day, usually under the guidance of a trained teacher. In most states, STEM education during the school day occurs within each subject area domain–for example, in mathematics, science, computer coding or health classes. Informal education happens outside of organized classrooms. This kind of learning experience can occur in museums, science centers, clubs, summer programs, schools outside of normal classroom hours, parks and other settings, which present exciting possibilities for engaging youth with interdisciplinary themes related to environmental health. Afterschool settings enable students to engage with peers and STEM professionals in challenging and exciting activities related to real world situations (Phillips and Miller 2014). Afterschool programs (and programs that occur before school or during the summer) offer opportunities to engage students from populations that traditionally are underrepresented in STEM fields. Girls, for example, attend afterschool programs at similar rates to boys, and African-American and Hispanic children are twice as likely to participate in afterschool programs than students from other groups (Afterschool Alliance 2015). Further, afterschool programs create opportunities for young people to build identity, see themselves as future STEM professionals, develop skills, enhance their academic performance and embark on STEM pathways (Krishnamurthi etal. 2014). Afterschool programs also build students’ interests and help them develop academic and social skills needed for success in STEM career pathways. Interest is an important motivator for students. Sadler etal. (2012) reported that the key factor predicting STEM career interest at the end of high school was interest at ninth grade. In addition, students’ initial STEM career interests influenced their retention in STEM areas in college. Thus, programs that stimulate and nurture students’ interest contribute to their ultimate persistence in STEM careers.

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Afterschool programs tap into valuable community resources that include designed settings, such as schools, clubs or museums; naturalistic settings provided by parks or arboreta; organizations and networks of people, consisting of practices STEM professionals, educators, hobbyists, and business leaders; and everyday exposures to STEM ideas on the Internet, television and other media. The rich interplay of interactions of students with individuals across contexts (school, neighborhoods, out-of-school experiences) in combination with broader cultural influences has been described as a STEM learning ecosystem (NRC 2015b). The STEM learning ecosystem includes all of the various influences, contexts and learning modalities that influence students over time. Well-designed STEM informal and out-of-school programs build skills and knowledge that contribute to environmental health literacy in areas such as communications, problem-solving, teamwork, career awareness and community involvement, even when the programs are not focused explicitly on environmental health science themes. High quality informal and out-of-school STEM learning opportunities have three design features in common as identified by the National Research Council (2015a). Productive programs: • Engage young people by providing first-hand experiences, sustained STEM practices and a supportive community; • Respond to young people’s immediate interests by being socially meaningful and culturally responsive, while promoting development of their collaborative and leadership skills; • Connect learning across the STEM learning ecosystem by leveraging community resources and partnerships. First hand experiences are powerful motivators for students. Afterschool activities that enable students to work with peers to solve challenges were found to predict content knowledge gains related to life science and epidemiology in a Houston afterschool program, Think Like a Microbiologist (Newell etal. 2015). In addition, the afterschool program boosted students’ perceptions of their own willingness to work hard on difficult topics. Garden Mosaics youth activities developed by Cornell University, and implemented in urban community gardens across the country, is an example of a culturally responsive out-of-school initiative that involves a wide range of organizations. The program involves students in exploring the gardening assets within their communities, interviewing gardeners about their planting practices or cultural traditions, conducting a community garden inventory and development of Action Projects, in which they apply what they have learned to enhance their neighborhoods or local gardens. Over 4 years of the program, approximately 1200 educators, 14,000 youth and 2500 gardeners participated in Garden Mosaics activities (Krasny and Tidball 2016). When interviewed after the pilot phase of the project, student participants most frequently mentioned benefits related to gardening skills, learning from and developing relationships with elder gardeners, academic/research skills,

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such as writing and measuring, teamwork and appreciation for the value of gardens (Krasny and Doyle 2002). Community-engaged research and other community-focused programs provide other vehicles for meaningful out-of-school learning. Community-engaged research (CEnR) requires students to work side-by-side with members of neighborhoods to identify and define problems, collect information and answer research questions. The Health Science and Technology Academy (HSTA) in West Virginia has created a successful STEM pipeline model for underrepresented minority students across the entire state. Approximately 800 high school students (grades 9–12) participate each year in HSTA, which is led by faculty at the University of West Virginia and local governing boards comprised of community members. Students enter the program in ninth grade, attend two summer camp experiences, additional activities during the school and complete 75h of community service. Over 4 years, the students engage in increasingly rigorous activities, including summer research experiences and community-related projects, including community-based participatory research on disease prevention (Branch and Chester 2009). Importantly, HSTA has improved high school graduation rates, college attendance and graduation in health science and STEM fields of underrepresented minority students–96% of HSTA graduates attend college, 90% graduate with a four-year degree or better, and 65% major in a health or STEM subject, with 59% choosing one of the health professions (McKendall etal. 2014). Student laboratory or other research experiences place students in the roles of investigators and research assistants. These programs, which occur in the field, laboratory or communities, let students understand that STEM fields, including environmental health, are collaborative endeavors with real-world application. By working with a range of STEM professionals engaged in environmental health research, students gain insights into possible career pathways and develop key professional and social skills, such as written and verbal communication, that contribute to success in any field. The Life Sciences Learning Center at the University of Rochester School of Medicine and Dentistry investigated the impacts of its Summer Science Academy for high school students. The program includes guided and independent laboratory experiments, bioethics discussions, computer workshops, library research and field trips. The program enrolled between 20 and 39 students each year from 1996 through 2002. Long term follow-up with former participants found that the program had a positive influence on their performance in advanced science courses, as well as their decisions to participate in other science-related programs and possible career pathways (Markowitz 2004). High quality STEM afterschool and out-of-school programs share a suite of characteristics. These best practices, as exemplified by projects described in this section, should be applied to any informal learning experiences that aim to develop students’ environmental health literacy, regardless of whether the program is related to a particular topic, such as asthma, or a skill, such as community advocacy.

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nvironmental Health Literacy andClosing E theAchievementGap Environmental health topics bring immediate relevance to classroom STEM activities. Twenty percent of US students are part of families living in poverty (NCES 2017)–and many of these students are at high risk for disengaging from school, dropping out or not having access to post-secondary opportunities. At the same time, environmental risks are disproportionately high for many low income and underrepresented minority students. These exposures occur both in homes and neighborhoods. Children in rural areas may be close to industrial sites, mines, agricultural chemicals or agricultural or industrial waste. Urban children may be exposed to lead, poor water quality, or indoor air pollutants–to name a few hazards. In addition, smoking rates continue to be higher among low income families (Gochfield and Burger 2011). In addition to greater exposure to environmental hazards, low income students or those from underrepresented minority groups oftenhave less access to early learning opportunities and are more likely to attend schools with fewer high quality teachers, fewer opportunities for advanced coursework and unsupportive school environments. These effects are cumulative over a lifetime of attending school. By the time many students reach high school, they already are behind in mathematics, reading or science, and are less likely to be prepared for or persist in STEM course sequences or pathways that lead to STEM careers (Darling Hammond 2010). Despite efforts to improve test scores in reading, writing, mathematics, science and social studies by all students–United States Hispanic, African Americanor economically disadvantaged students perform below Asian, white or non-economically disadvantaged students at all grade levels on many state, national and international assessments. The income achievement gap already is present when students enter kindergarten, and persists as students continue through school (Reardon 2013). Disparities in students’ test scores between white and non-white students continue to be reflected in national assessments, such as the National Assessment of Educational Progress (NAEP). Based on 2012 mathematic data, for example, the average scores for Hispanic and African Americanfourth grade students were below the average score of white students (Musu etal. 2016). Closing the achievement gaps between high and low-income students, and among white or Asian students and Hispanic or African American students at all grade levels is a national priority. Relevant instruction, well-prepared teachers, and a classroom climate that cultivates and supports students’ social identities and sense of belonging are key contributors to student success and persistence (Cohen and Garcia 2008). In fact, successful learning and development of a professional identity (e.g., feeling like a scientist) are mutually reinforcing experiences–which, in turn, increase confidence and motivation to pursue science (or other areas). These elements have been described as the “persistence framework” (Graham etal. 2013). In the framework, student confidence and motivation essential for identity development are fostered through strategies such as active learning, being part of a

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community, acquiring relevant knowledge and skills, and engaging in authentic problems. It should not be surprising that the same elements described within the context of the persistence framework have been outlined elsewhere in this chapter as components of effective STEM education and contribute to raising students’ environmental health literacy. The challenge, however, once again falls on teachers and instructional designers to develop and implement programs of instruction that are relevant to students, while building essential knowledge, skills, behaviors and attitudes.

Summary STEM (science, technology, engineering and mathematics) education and efforts to develop the environmental health literacy of elementary and secondary school students share an emphasis on critical thinking, problem-solving, teamwork and informed decision-making in the context of real-world problems. STEM implies the use of active, interdisciplinary approaches to teaching and learning in which concepts and skills are taught holistically and make connections among individuals, school, community and the world through authentic problems. Yet, even though environmental health topics are engaging to students and form the basis of many effective formal and out-of-school programs for students–they are not always part of STEM education. More explicit connections to pertinent skills and environmental health knowledge are needed as part of formal and informal program development, curricula and textbooks, and teacher professional development, in order to raise environmental health literacy of students, teachers and even families. The Next Generation Science Standards (NGSS) present a way to build students’ environmental health literacies through practices, crosscutting concepts and disciplinary core ideas related to essential science understandings. Environmental health topics and themes are reflected in the standards, and provide appropriate cases and topics for investigations by students. However, more explicit connections between earth/space, life and physical science teaching are required if current needs for environmental health literacy are to be met. These connections can be made through greater dissemination of existing curricular materials and through more incorporation of environmental health topics and literacy skills into commercial textbooks. High quality school-based STEM education depends on skilled teachers. STEM teachers need professional development that focuses on fostering deep knowledge; engages them in active learning and collaborative work; is coherent with other school policies and practices; and has sufficient duration in terms of intensity and contact hours to drive lasting improvements in instructional practices. Environmental health education programs, usually conducted in affiliation with universities, research organizations or museums and science centers, have made important contributions to STEM teacher development, and should be expanded to meet needs for teacher literacy in environmental health.

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Environmental health science education programs across the country have contributed to closing achievement gaps between high and low-income students, and among white or Asian students and Hispanic or African American students at all grade levels. In addition, successful models for a variety of STEM programs help develop problem-solving, teamwork and communications skills that are components of environmental literacy. These programs should be continued or expanded, so that all students have access to the STEM learning experiences that serve as a springboard to environmental health literacy.

References [AAAS]American Association for the Advancement of Science. (1993). Benchmarks in science literacy (p.418). NewYork: Oxford University Press. [EPA]Environmental Protection Agency (2017a). Sunwise: A Program that Radiates Good Ideas. Accessed online, 30 Oct 2107. https://www.neefusa.org/resource/sunwise-tool-kit. [EPA]Environmental Protection Agency (2017b). History of the Sunwise Program at EPA.Accessed online, 30 Oct 2107. https://www.epa.gov/sunsafety/history-sunwise-program-epa. [NAS]National Academy of Sciences. (1996). National science education standards. Washington, DC: National Academy Press. [NCES]National Center for Educational Statistics (2017). Characteristics of Children’s families. The Condition of Education. Accessed online, 30 Oct 2017, https://nces.ed.gov/programs/coe/ indicator_cce.asp [NIEHS]National Institute of Environmental Health Sciences (2017) Environmental Health Science Education. Accessed online, 30 Oct 2017, https://www.niehs.nih.gov/research/supported/translational/ehsic/index.cfm [NRC]National Research Council. (2000). Inquiry and the National Science Education Standards: A guide for teaching and learning. Washington, DC: The National Academies Press. [NRC]National Research Council. (2012). A framework for K-12 science education: Practices, crosscutting concepts, and core ideas. Committee on a conceptual framework for new K-12 science education standards. Board on science education, division of behavioral and social sciences and education. Washington, DC: The National Academies Press. [NRC]National Research Council. (2015a). Guide to implementing the next generation science standards. Committee on guidance on implementing the next generation science standards. Board on science education, division of behavioral and social sciences and education. Washington, DC: The National Academies Press. [NRC]National Research Council. (2015b). Identifying and supporting productive STEM programs in out-of-school settings. Committee on successful out-of-school STEM learning. Board on science education, division of behavioral and social sciences and education. Washington, DC: The National Academies Press. [OECD]Organisation for Economic Co-operation and Development. (2007). PISA 2006: Science competencies for tomorrow’s world: Volume 1: Analysis. Paris: OECD Publishing. https://doi. org/10.1787/9789264040014-en. [TAMU] Texas A&M University (2017). The environmental health sciences Summer Institute. Accessed online, 30 Oct 2017, http://www.k12summerinstitute.org/index.php [URMC] University of Rochester Medical Center (2017). Grant helps Build Understanding of Environmental Health with Hands-on Science Kits. Research@URMC, June 2017. Accessed online 15 Feb 2018): https://www.urmc.rochester.edu/research/blog/june-2017/grant-helpsbuild-understanding-of-environmental-h.aspx?feed=blogs

7 Strengthening Environmental Health Literacy Through Precollege STEM…

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After School Alliance (2015). America After 3 pm: Full STEM Ahead. Accessed online, 13 Jun 2018. http://www.afterschoolalliance.org/AA3PM/ Backes B, Goldhaber D, Cade W, Sullivan K, Dodson M (2016) Can UTeach? Assessing the Relative Effectiveness of STEM teachers. CALDER Working Paper No. 173 December 2016. Accessed online, Oct 4, https://eric.ed.gov/?id=ED573187. Beaton, A. (1996a). Mathematics achievement in the middle school years: IEA’s third international mathematics and science study (TMSS). Chestnut Hill: TIMSS International Study Center, Boston College. Beaton, A. (1996b). Science achievement in the middle school years: IEA’s Third International Mathematics and Science Study (TMSS). Chestnut Hill: TIMSS International Study Center, Boston College. Branch, R., & Chester, A. (2009). Community-based participatory clinical research in obesity by adolescents: Pipeline for researchers of the future. Clinical and Translational Science, 2, 350– 354. https://doi.org/10.1111/j.1752-8062.2009.00149.x. Bransford, J., Brown, A., & co*cking, R. (Eds.). (2000). How People Learn: Brain, Mind, Experience, And School. Washington, DC: National Academy Press. Brown, R., Brown, J., Reardon, K., & Merrill, C. (2011). Understanding STEM current perceptions. Technology & Engineering Teacher, 70(6), 5–9. BSCS (2012) Chemicals, the Environment, and You: Explorations in science and human health. Colorado Springs, CO: BSCS. Accessed online, 30 Oct 2017. https://science.education.nih. gov/supplements/ChemicalsEnvironmentAndYou.pdf Bybee, R. (2010a). Advancing STEM education: A 2020 vision. Technology and Engineering Teacher, 70(1), 30–35. Bybee, R. (2010b). The teaching of science: 21st century perspectives (p.95). Arlington: NSTA Press. Bybee R (2015) The 5E instructional model: Creating teachable moments. Arlington, VA. Cohen, G., & Garcia, J. (2008). Identity, belonging, and achievement. Current Directions in Psychological Science, 17(6), 365–369. Committee on Prospering in the Global Economy of the 21st Century: An Agenda for American Science and Technology, National Academy of Sciences, National Academy of Engineering & Institute of Medicine. (2007). Rising above the gathering storm : Energizing and employing America for a brighter economic future. Washington, DC: National Academies Press. Darling-Hammond, L. (2010). The flat world and education: How America’s commitment to equity will determine our future. NewYork: Teachers College Press. Doyle, T. (2011). Learner-centered teaching: Putting the research on learning into practice. Sterling Virginia: Stylus Publishers. Finn, S., & O’Fallon, L. (2017). The emergence of environmental health literacy—From its roots to its future potential. Environmental Health Perspectives, 125(4), 495–501. Freeman, S., Eddy, S., McDonough, M., Smith, M., Okoroafor, N., Jordt, H., & Wenderoth, M. (2014). Active learning increases student performance in science, engineering, and mathematics. Proceedings National Academy of Sciences, 111(23), 8410–8415. Geller A, Rutsch L, Kenausis K, Selzer P, Zhang Z (2003) Can an hour or two of sun protection education keep the sunburn away? Evaluation of the Environmental Protection Agency’s Sunwise School Program. 2:13, Accessed online, https://doi.org/10.1186/1476-069X-2-13 Gochfield, M., & Burger, J.(2011). Disproportionate exposures in environmental justice and other populations: The importance of outliers. American Journal of Public Health, 101(Suppl 1), S53–S63. Graham, M., Frederick, J., Byars-Winston, A., Hunter, A., & Handelsman, J.(2013). Increasing persistence of college students in STEM. Science, 341, 1455–1456. Grigg, J., Kelly, K., Gamoran, A., & Borman, G. (2012). Effects of two scientific inquiry professional development interventions on teaching practice. Educational Evaluation and Policy Analysis, 35(1), 38–56.

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Haney, J., Want, J., Keil, C., & Zoffel. (2007). Enhancing teachers’ beliefs and practices through problem-based learning focused on pertinent issues of environmental health science. The Journal of Environmental Education, 38(4), 25–33. Hursh, D., Martin, C., Trush, M., & Davis, H. (2011). Teaching environmental health to children. NewYork: Springer. Kang, N., DeChenne, S., & Smith, G. (2012). Inquiry learning of high school students through a problem-based environmental health science curriculum. School Science and Mathematics, 112(3), 147–158. Krasny, M., & Doyle, R. (2002). Participatory approaches to program development and engaging youth in research: The case of an Inter-Generational Urban Community Gardening Program. Journal of Extension, 40(2), Article 5FEA3 Accessed online. http://www.joe.org/ joe/2002october/a3.php. Krasny, M., & Tidball, K. (2016). Community gardens as contexts for science, stewardship, and civic action learning. In J.Blum (Ed.), Urban horticulture: Ecology, landscape and agriculture (pp.267–290). Waretown: Apple Academic Press. Krishnamurthi, A., Ballard, M., Noam, G. (2014). Examining the impact of afterschool STEM programs. Paper commissioned by the Noyce Foundation. Accessed online, 30 Oct 2017. http:// www.afterschoolalliance.org/ExaminingtheImpactofAfterschoolSTEMPrograms.pdf Lewis, C., Perry, R., & Hurd, J.(2004). A deeper look at lesson study. Educational Leadership, 61(5), 6–11. Lieberman, G. (2013). Education and the Environment: Creating Standards-Based Programs in Schools and Districts. Cambridge, MA: Harvard Education Press. Lieberman, G., & Hoody, L. (1998). Closing the achievement gap: Using the environment as an integrating context for learning. San Diego: State Education and Environment Roundtable. Marder M. (2016). Is STEM Education in Permanent Crisis. Education Week. Oct 26, 2106. Accessed online 4 Oct 2016, http://www.edweek.org/ew/articles/2016/10/26/is-stem-education-in-permanent-crisis.html Markowitz, D. (2004). Evaluation of the long-term impact of a university high school summer science program on students’ interest and perceived abilities in science. Journal of Science Education and Technology, 13(3), 395–407. McCombs, B., & Miller, L. (2007). Learner-centered classroom practices and assessments: Maximizing student motivation, learning and achievement. Thousand Oaks: Corwin Press. McKendall, S., Kasten, K., Hanks, S., & Chester, A. (2014). The health sciences and technology academy: An educational pipeline to address health care disparities in West Virginia. Academic Medicine. Journal of the Association of American Medical Colleges, 89(1), 37–42. Moreno, N. (2005). Science education partnerships: being realistic about meeting expectations. CBE Life Sciences Education, 4, 30–32. Moreno, N., Chang, K., Tharp, B., Denk, J., Roberts, J., & Rahmati, S. (2001). Teaming up with scientists. Science and Children, 39, 42–45. Musu-Gillette L, Robinson J, Mc Farland J, Kewal Ramani A, Zhang A, Wilkinson-Flicker S (2016) Status and Trends in the Education of Racial and Ethnic Groups 2016 (NCES 2016- 007). U.S. Department of Education, National Center for Education Statistics. Washington, DC.Accessed online, 30 Oct 2017. http://nces.ed.gov/pubsearch. Moreno, N., & Tharp, B. (2006). How do students learn science? In J.Rhoton and P.Shane (Eds.), Teaching Science in the 21st Century. National Science Teachers Association and the National Science Education Leadership Association. Arlington, VA: NSTA Press. pp292–305. Moreno, N., Denk, J., & Tharp, B. (2006). An interdisciplinary approach to teaching food and nutrition in elementary classrooms. CESI Science, The Journal of the Council for Elementary Science International, 39(1):15–21. Newell, A., Zientek, L., Tharp, B., Vogt, G., & Moreno, N. (2015). Students’ attitudes toward science as predictors of gains on student content knowledge: Benefits of an after-school program. School Science and Mathematics, 115(5), 216–225.

7 Strengthening Environmental Health Literacy Through Precollege STEM…

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NGSS Lead States. (2013). Next generation science standards: For states, by states. Washington, DC: The National Academies Press. Oregon State University (2017) Welcome to Hydroville, USA. Accessed online, 30 Oct 2017. http://blogs.oregonstate.edu/hydroville/ O’Fallon, L. (2017). Environmental Health Science Education. Accessed online, 13 Jun 2018. https://www.niehs.nih.gov/research/supported/translational/ehsic/index.cfm Phillips, A., & Miller, J.(2014). Career interests of students in a STEAM camp. In M.Searson & M.Ochoa (Eds.), Proceedings of society for information technology & teacher education international conference 2014 (pp.2277–2282). Chesapeake: AACE. Reardon, S. (2013). The widening income achievement gap. Educational Leadership, 70(8), 10–16. Richardson, V. (2003). Constructivist pedagogy. Teachers College Record., 105(9), 1623–1640. Roberts, J., Henson, R., Tharp, B., & Moreno, N. (2001). An examination of change in teacher self-efficacy beliefs in science education based on duration of inservice activities. Journal of Science Teacher Education, 12(3), 199–213. Rutherford J, Ahlgren A (1991) Science for all Americans. NewYork: Oxford University Press, ISBN 9780195067712. pp272. Sadler, P., Sonnert, G., Hazari, Z., & Tai, R. (2012). Stability and volatility of STEM career interest in high school: A gender study. Science Education, 96, 411–427. Schmidt, W., McKnight, C., Cogan, L., Jakwerth, P., & Houang, R. (2002). Facing the consequences: Using TIMSS for a closer look at US mathematics and science education. NewYork: Kluwer Academic Publishers. Schulman, L. (1986). Those who understand: Knowledge grown in teaching. Educational Researcher, 15, 4–14. Schulman, L. (2000). Teacher development: Roles of domain expertise and pedagogical knowledge. Journal of Applied Developmental Psychology, 21, 129–135. Tomasiewicz, H., Hesselbach, R., Carvan, M., Goldberg, B., Berg, C., & Petering, D. (2014). Zebrafish as a model system for environmental health studies in the grade 9–12 classroom. Zebrafish, 11(4), 384–395. https://doi.org/10.1089/zeb.2013.0881. Tsupros N, Kohler R, Hallinen J(2009). STEM education in southwestern Pennsylvania: Report of a project to identify the missing components, intermediate unit 1 and Carnegie Mellon, Pennsylvania. Accessed online, 30 Oct 2017. https://www.cmu.edu/gelfand/documents/stemsurvey-report-cmu-iu1.pdf Van Driel, J., & Berry, A. (2001). Teacher professional development focusing on pedagogical content knowledge. Educational Researcher, 41(1), 26–28. Weber, K., Hesselbach, R., Kane, A., Petering, D., Petering, L., & Berg, C. (2013). Minnows as a classroom model for environmental health. The American Biology Teacher, 75(3), 203–209. Weiss, I., & Pasley, J.(2009). Mathematics And Science For A Change: How To Design, Implement And Sustain High-Quality Professional Development. Portsmouth, NH: Heinemann. White, B.M., Hall, E.S., & Johnson, C. (2014). Environmental health literacy in support of social action: An environmental justice perspective. Journal of Environmental Health, 77(1), 24–29. Wilson, S. (2013). Professional development for science teachers. Science, 340(6130), 310–313.

Chapter 8

Health Professionals’ Environmental Health Literacy PhilBrown, StephanieClark, EmilyZimmerman, MariaValenti, andMarkD.Miller

Abstract Health care providers play an important role in communicating health risks to patients, community residents, and public health agencies. For their own patients, the role of the provider could include taking an environmental health (EH) history, answering patient questions about exposures, providing anticipatory guidance to prevent exposures, and remaining alert to the possibility of toxicants or other environmental influences causing acute or chronic illness. However, few clinicians feel confident in discussing environmental risks, although patients rate them of high concern. There is ample evidence from clinician surveys and case reports of EH trainings to show that health professionals are not sufficiently literate in EH.This is also evident in community-engaged research projects. Lack of training and knowledge on the links between environment and health and lack of available clinical tools for both provider and patient education contribute to the inattention to this topic in the clinical, public health, and community settings. Health professionals likely have no experience in dealing with local officials and the general public in Research reported in this publication was supported by the National Institute Of Environmental Health Sciences of the National Institutes of Health under Award Number T32ES023769. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. This publication was supported by the cooperative agreement award number U61TS000238-04 from the Agency for Toxic Substances and Disease Registry (ATSDR). I was also supported by the US National Institute of Environmental Health Sciences (NIEHS) (grants P01 ES018172 and P50ES018172) and the USEPA (grants RD83451101 and RD83615901), as part of the Center for Integrative Research on Childhood Leukemia and the Environment (CIRCLE). Its contents are the responsibility of the authors and do not necessarily represent the official views of ATSDR, EPA, or NIEHS. P. Brown (*) · S. Clark · E. Zimmerman Northeastern University, Boston, MA, USA e-mail: [emailprotected] M. Valenti Commonweal, Bolinas, CA, USA M. D. Miller Western States Pediatric Environmental Health Specialty Unit, University of California, San Francisco, CA, USA © The Author(s) 2019 S. Finn, L. R. O’Fallon (eds.), Environmental Health Literacy, https://doi.org/10.1007/978-3-319-94108-0_8

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affected communities, nor with outside agencies, yet they may be called upon to give information and guidance to those parties that extend beyond their own patients. In this sense, they become part of a broader public health network in which the community is the patient. This chapter reviews health professionals’ current environmental health literacy (EHL) from the academic to community arenas, and focuses on examples of success and opportunities for expansion. Keywords Physicians · Nurses · Speech-language pathologists · Environmental health literacy · Environmental factors in health · Medical education · Health education · Health communication · Toxic chemicals · Health policy

Theoretical Frameworks This chapter is guided in part by a “right-to-know” approach that holds that people are entitled to receive complete information on EH exposures and hazards. Right- to-know is enshrined in a variety of legislative mandates and scientific practices. Labor-environmental coalitions succeeded in passing the 1981 Philadelphia right- to-know legislation, based on concerns about workplace toxics exposures, and in the 1983 Worker and Community Right to Know Act in New Jersey, based on concern about the state’s many chemical plants (Mayer etal. 2010). At the federal level, the Emergency Planning and Community Right-to-Know Act (EPCRA), which re- authorized the Superfund Program, was passed in 1986, by only one vote. The EPCRA was passed in response to the 1984 disaster in Bhopal, India, caused by a massive release of methyl isocyanate that killed or severely injured more than 2000 people. Based on these environmental disasters, Congress imposed requirements for federal, state and local governments, tribes, and industry, that covered emergency planning and “Community Right-to-Know” reporting on hazardous and toxic chemicals, in order to increase public knowledge and access to information on chemicals at individual facilities, their uses, and releases into the environment. This legislation also required facilities handling or storing any hazardous chemicals to submit Safety Data Sheets (SDSs) to state and local officials and local fire departments. While EPCRA is not likely known to the public, the public is relatively familiar with one thing that EPCRA created – the Toxics Release Inventory (TRI), a requirement for facilities to report on over 600 chemicals that are released in high volumes (EPA. gov/EPCRA). Many people have used TRI data to learn of local hazards and press for corporate reform and EPA pressure, and environmental research has employed TRI data as well (Fung and O’Rourke 2000). From the research perspective, right-to-know has increasingly been transformed into the “research right-to-know,” as situated in report-back practices whereby EH data is shared with research participants (See Brody et al. Chap. 6). This method is central to the community-based participatory research (CBPR) approach that

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views such data to be owned by participants as it came from their homes and/or bodies. Besides a growing number of researchers who pursue these practices, (Quandt etal. 2004; Brody etal. 2007; Emmett etal. 2009), formal guidelines for such data sharing have been established by the National Academies of Science, California Biomonitoring Program, CDC National Conversation on Public Health and Chemical Exposure, the federal Interagency Breast Cancer and the Environment Coordinating Committee, Statistics Canada, and Consortium to Perform Human biomonitoring on a European Scale (Brody etal. 2014a, Brody etal. 2014b). This right-to-know background highlights the importance of EHL for health care professionals, while itsimultaneously demonstrates the potential to strengthen EHL.Health professionals gain EH knowledge needed to answer questions from patients about their level of exposure and what it means for their health. Furthermore, health professionals learn from the populations exposed to toxic chemicals or “affected” c ommunities. This experiential learning may be particularly relevant when media has covered a local issue such as the Flint, MI lead-contaminated water crisis in 2016. The approach is also based on ethnographic work such as “contaminated communities” (Edelstein 1988) and “popular epidemiology” (Brown and Mikkelsen 1990) in order to show the often, unmet needs for health professional awareness, and hopefully also involvement, in affected communities. In the wealth of such case studies that highlight community, rather than medical, discovery of contamination and/or health effects (Hoover etal. 2015), one learns that health professionals are largely unaware of environmental contaminations or how patients may be exposed to it, and despite frequent requests for advice, are unable to help affected residents understand their situation, recognize environmentally induced symptoms, or provide a specific diagnosis. Sometimes, professionals’ lack of EH knowledge can be very detrimental, as noted by Balshem (1993), who showed health professionals in a cancer center looked at the hazard perceptions of people in a Philadelphia working class neighborhood, and used an individual-blaming approach that conflicted with the industry-blaming approach of sufferers. This shows how the absence of professional EHL reinforces a medical paternalism that creates an oppositional framework that blocks effective communication and practical resolution (e.g. through public health and industrial regulations and controls). Given the large contribution of environmental factors to disease, it is in the general interest of all health professionals to know more. Still, it is not sufficient for health professionals to merely have knowledge of environmental contributors to disease. EH knowledge is not equivalent to EHL, as it is quite possible to have knowledge of environmental factors that impact diseases and conditions, yet not possess the skills or the resources to apply and transfer that knowledge in clinical encounters. This knowledge represents an early stage of EHL that occurs prior to the stage of EHL that leads to action in the clinic, in the local community, and in the policy arena. The following levels of EHL are stages of awareness relevant to health professionals:

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• Level 1 – Knowledge and understanding of environmental effects on human health. Similar, to what Finn and O’Fallon propose, this level is the foundation of EHL. • Level 2 – Communicating and providing knowledge to patients. Examples of actions at this level could include, taking occupational and environmental histories, offering anticipatory guidance to patients to reduce exposures, or referring patients to environmental health experts such as the Pediatric Environmental Health Specialty Units. • Level 3– Communication to and engaging with community groups. At this stage, health professionals go beyond clinical communication knowledge and skills for individual patients, and engage in population health/public health approaches that reduce exposures to whole groups and that involve communities in discussing environmental hazards and how to respond to them. At this level, the healthcare professional appreciates the difference between individual and social determinants of health. • Level 4– Participation in professional societies and the policy arena. As mastery of knowledge and capacity to communicate increase, there are ways to engage in advocacy through professional societies and associations. Through these groups, professionals can take strong stances on environmental influences on health, such as advocating to make TRI and other relevant data more accessible to patients and community residents. • Level 5– Participation in public advocacy. In addition to health professionals getting their associations to take strong stances on policy, they may also act serve on task forces or work with other groups to influence policy. That could include supporting health protective legislative reforms such as improvements to the Toxic Substances Control Act (TSCA), or even assisting with evidence-gathering in states to help inform regulatory levels of toxicants (Fig.8.1). Taking into account these different levels, this chapter’s central thesis is that EHL for health professionals means that they grasp the personal, community, and broader societal context of environmental exposures, and are able to engage on this awareness with people and groups at all levels. EHL can be enhanced in many ways at any of the levels. Health care providers may initiate the process by providing advice to patients on how to prevent environmental exposures and maximize health through health protective actions. Patients and/or affected communities seeking professional help may begin the process, as in the example below of Testing for Pease, a community group dealing with per- and polyfluoroalkyl substances (PFAS, a class of man-made chemicals) contamination. Even at a higher level, professionals can take the lead, as in the example below of Hospitals for a Healthy Environment in Rhode Island. Finally, the process may be initiated from both the patient/public and health professional, as described in the example about local and national work on environmental factors in breast cancer.

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Fig. 8.1 Levels of EHL

cope oftheProblem andtheNeed forProfessional S Environmental Health Literacy Providers’ lack of training and knowledge of environmental health is the most commonly discussed drawback to their EHL however one must also include the obstacles that affected communities face. In this section, both sets of issues are discussed with an emphasis on pediatric health care providers.

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Fig. 8.2 Health across the lifespan (Illustration: Stephen Burdick Design; Stein etal. 2008)

Environmental factors include all the aspects of the way humans live, work, play and socialize and how these factors influence physical and mental health throughout life. Factors include diet, exercise, the natural and built environments, familial and social interaction, and exposure to toxic substances. An ecological approach understands that all of these factors interact to help create the conditions, along with genetics, for health and wellbeing or disease. Because early life is so critical to health across the lifespan, (Miller and Marty 2012), obstetricians, pediatric care, and family health practitioners may be the most important health professionals to provide anticipatory guidance about environmental health threats and prevention strategies to patients, as well as to be advocates for protective health policies at all levels. There are many different windows of susceptibility across a person’s lifespan, as Fig.8.2 shows. For the purposes of this chapter, the focus is only on the most critical windows, pregnancy and early childhood. There is a clear future need to address this in geriatrics, where there has been little attention. Beginning early in life and continuing throughout the life course multiple environmental factors are strong determinants of health, even decades later, and caninclude enduring impacts on brain aging and function. For example, maternal exposure to air pollution is associated with low birth weight and other problems. Air pollution also impairs lung development in children and increases the risk of respiratory tract infections, asthma, and cognitive behavioral problems. Low birth weight, followed by rapid catch-up growth, increases the risk of teenage and adult obesity. Low birth weight can also be a factor for adult cardiovascular disease, hypertension, and Type II diabetes. These diseases/disorders (especially diabetes and obesity) are associated with increased risk of Alzheimer’s disease and dementia later in life.

Providers: What’s theProblem? Nurses and medical doctors enjoy the highest ratings of honesty and ethical standards of all professions (Gallup 2014). They can play an important role in changing patterns of patient behavior as well as influencing public policies (Kreuter et al. 2000; Kovarik 2005). Health professionals’ status and influence makes them a key

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stakeholder to educate about EH, because they are trusted messengers and make credible advocates for both patients and policymakers. However, their lack of knowledge of the subject is a major challenge when it comes to environmental health topics.

State ofKnowledge To begin to address health professionals’ knowledge and EHL, one first needs to know what their state of knowledge on EH issuesis. Surveys of pediatricians, family health practitioners and obstetricians/gynecologists repeatedly show that providers typically do not address EH threats in discussions with patients. In multiple surveys, these medical professionals report lack of knowledge about taking the patients’ environmental history, and also being concerned about their ability to follow-up on environmental issues that may be related to their patients’ health, even though they are aware that patients are worried about these issues (AAP Council on Environmental Health 2011; Stotland etal. 2014; Trasande etal.2006a, b, 2010, 2014; Zachek et al. 2015; AHRP/PSR 2007; Kilpatrick et al. 2002; Roberts and Gitterman 2003; Ibanez etal. 2015). In one survey of reproductive healthcare providers, the most important reason for not counseling patients on EH was time constraints, followed by lack of knowledge and then by lack of materials and evidence-based guidelines, followed by more pressing concerns (ARHP/PSR 2007). Another survey showed that routine guidance to patients on the health effects of environmental exposures was not a high priority, despite the fact that over three- quarters said that by counseling patients they could reduce patient exposures to hazards (Stotland etal. 2014). A survey of pediatricians in Michigan reported high self-efficacy and knowledge of EH only in relation to lead and secondhand smoke (Trasande etal. 2010). Other common topics in pediatric EH (e.g. mercury and pesticides) elicited responses indicating much less confidence. In the wake of the wide-spread exposure to lead in the water supply in Flint, Michigan in 2014, local resident and faculty physicians at Hurley Medical Center felt ill prepared to handle the questions arising from exposure and the potential health outcomes (Taylor etal. 2017). In the Flint survey, less than 15% responded with strong ratings that they were comfortable answering patients’ questions and confident in being able to accurately provide information. Only approximately one-third reported training in diagnosis and treatment of lead exposures. These results suggest that even in an area of medical knowledge such as lead poisoning, in which most medical trainees get at least some education and may rate themselves as knowledgeable and confident, when faced with actual patients with concerns, they realize that they are not confident in their knowledge base or experience. In post-training surveys from the Pediatric Environmental Health Toolkit trainings (conducted by Physicians for Social Responsibility and the Pediatric Environmental Health Specialty Unit at UCSF in 2006), challenges described by individual pediatric respondents were varied but themes emerged. These include

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such practical issues as a lack of clinicians with expertise in EH to make referrals to if an issue arises, and lack of regulations and public health infrastructure that could be utilized to protect patients. Other issues identified included the low confidence levels that physicians feel about discussing EH. One good reason may be that environmental medicine is “largely omitted in the continuum of U.S. medical education” (Gehle etal. 2011). Although, the National Environmental Education Foundation issued a position statement on “Health Professionals and Environmental Health Education” that was endorsed by sixteen health organizations and professional societies, a survey of environmental medicine content in U.S. medical schools found that 75% of medical schools only require about 7h of study in environmental medicine over 4years. In addition, a survey of Migrant Clinician Network clinicians found that approximately half had not had any training or courses related to environmental and/or occupational health” (NEETF 2004). In a survey in 2010, over one-third of graduating respondents believed that curricula provided insufficient attention to EH (AAMC 2010). The Association of American Medical Colleges 2011–2016 Curriculum Report indicates that 125 of 142 colleges surveyed reported inclusion of required coursework on environmental health in 2015–16, but it is unknown how extensive that training is (AAMC2018).

Pathways toChange Ultimately, clinicians want to address issues for which they can influence patient behaviors resulting in reduced risk and the resultant improved health. The integrated model of behavioral prediction suggests that health behaviors are a function of attitudes, self-efficacy, and perceived normative pressure, which is the influence of others and social norms (Mello and Hovick 2016). In a study of chemical exposures in new and expectant mothers, Mello and Hovick (2016) found that normative pressure was the best predictor of exposure reduction measures. The authors suggested that health communication messaging (and campaigns) should seek to reinforce or change perceived norms by using phrases like “Many pregnant women choose to eat organic produce” or “My pediatrician thinks that I should limit the use of plastic food packaging with my kids.” They suggest that messages conveying a sense of normative behavior would be more effective than those focused on attitudes or self- efficacy. In addition to the need for clinicians to have a basic understanding of health impacts of environmental exposures, they need training in how to best communicate this information in practical ways that have a positive influence on behavior. As a trusted advisor, be it to an individual, a family, or a community group, the clinician may act as an educator, interpreting information, advising on where to get additional reliable information, or doing additional research. Unlike governmental agencies and industry scientists, clinicians are more likely to assess exposure and hazards in a more qualitative way. Rather than take actual environmental measurements or develop mathematical models, physicians are more

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Table 8.1 Risk assessment as performed by risk assessors and clinicians Risk assessment step Hazard assessment

Exposure assessment

Dose-response assessment

Risk characterization

Risk communication

Questions asked by risk assessor What are the chemicals of concern, and what kind of harm are they known or suspected to cause? Which chemicals will we focus on? What are the sources and duration of exposures? How many people are exposed? What do our monitoring or modeling data predict about the range of doses in the population?

Questions asked by clinician What information do we have about an environmental problem, what chemicals were involved, and what sources of information are there? Is there a chance that your child may be coming in contact with (breathing, touching, ingesting, etc) this source? How often and for how long? Is the source highly contaminated or only slightly contaminated? (Review literature, consult with What effects are seen in animals or humans at different exposure levels? experts.) How do the levels at which effects have been demonstrated What are the doses at which compare with levels in the cancerous and noncancerous effects community? Are these levels higher occur? Is there a threshold below than regulatory limits? which no effect is expected? Given the above, what are the human Are regulations based on effects in impacts of current exposures? What is the fetus or child? Is there reason to be concerned that children may be at the population risk? Are there greater risk from exposure to this sensitive subpopulations? How chemical than adults may? confident are we in this analysis? Have I listened to the concerns Is the information relevant to the audience and understandable? Does it presented, responded with respond to public concerns? What are compassion, and helped identify information needed and credible the limitations in this assessment? sources for obtaining it? What additional steps are needed?

From Miller and Solomon (2003). Used with permission

likely to use approaches that involve questions about frequency and duration of exposure, which may be coupled with a rough assessment of the magnitude of the risk in order to determine the appropriate triage. Understanding this difference between researchers and healthcare professionals will be important for those hoping to improve environmental health literacy of the clinical community. Some of these differences, which may be valuable in working with the clinical community, are summarized in Table8.1.

Communities Relating Health Risks toProviders Outside of regular clinical visits, there are few options for communities to voice their concerns about environmental hazards to health care providers. In addition, mechanisms for reporting environmental hazards inlocal communities fall under the governmental domain and such information is not relayed to healthcare

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providers. The lack of awareness of local environmental hazards was documented by Brown and Kelley (1996) who reported that physicians practicing in areas with a Superfund site, or other well-known contamination issues, were no more likely than those practicing in areas without a Superfund or other contaminated site to be aware of environmental determinants of health. Additionally, studies have documented that when patients do express concern about environmental causes of poor health outcomes, physicians often discount these or focus more on lifestyle factors such as alcohol consumption or smoking (Balshem 1993). This is not surprising given the lack of training on EH in medical education combined with the focus on individualized determinants of health. Federally funded programs that require or encourage collaboration among health care professionals, communities and researchers is one approach to bring these groups together. Previous programs, such as the NIEHS-funded “Environmental Justice: Partnerships for Communication” and the EPA-funded Environmental Justice and Environmental Education programs, have demonstrated the success of these collaborations to increase the EHL of all partners. Even when funding has been available, the budget is often not sufficient given the costs of covering effort levels of physicians. EPA’s Technical Assistance Grants (TAG) apply only to Superfund sites, and are typically used to cover the costs of having environmental engineers or site remediation professionals explain to affected residents the highly technical documents involved in cleanups. However, EPA also offers a Public Health TAG grant, that can be used in addition to a regular TAG grant, but it has not been publicized broadly and most community groups are not aware of it.

What Works?– Examples ofProgress Role of Providers As discussed earlier, the first three levels of EHL for health care providers are to (1) improve their understanding of EH, then (2) strengthen their ability to translate that knowledge into actionable information and prevention strategies for their patients, and (3) further enhance their knowledge and skills to apply in the community setting. Recognizing the stated challenges, it would be helpful to see greater integration of required EH education into medical, nursing and public health schools, as well as during residency and other professional training. While such integration is not currently widespread, below are some examples of elective courses on EH issues directed to medical and other students and the EHL benefits these courses will provide for health care professionals. The Icahn Medical School at Mt. Sinai in NewYork City has one of the more substantial programs incorporating EH into curriculum. EH is regularly included during students’ first 2years during required “In Focus” weeks devoted to human rights, advocacy, global health, and health disparities. These innovative sessions examine current EH topics of particular concern in a participatory fashion. EH fits comfortably with such community health topics as advocacy and health disparities, but it is important to also include them in traditional specialty-based clinical train-

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ing. In the Pediatrics department, a Pediatric Environmental Health Specialty Unit (PEHSU) faculty member routinely helps conduct morning rounds and is able to include environmental exposures in the discussion of differential diagnoses. The PEHSU at Mount Sinai offers clinical rotations for medical students and residents, works with students on research products, and offers a Pediatric Environmental Health course in the MPH program. These activities are supported by staff from the PEHSU as well as the Occupational and Environmental Medicine department and assorted epidemiologists and other researchers at the institution. The University of Texas Health Science Center at San Antonio’s medical school offers the elective course “Medicine and the Environment.” The course “covers the health impacts from chronic exposure to common chemicals and includes house calls for students to assess chemicals found in local residents’ homes, such as cancer-causing compounds used in perfume fragrances, body lotions and plug-in air fresheners, as well as the threats posed by them. The students are then assigned to write an action plan for the families to reduce their exposure.” (NYT Nov 21, 2017. https://www.nytimes.com/2017/11/21/opinion/flint-doctors-chemical-exposure. html). Global health issues such as climate change may provide the breakthrough needed to better institutionalize environmental health throughout medical education and training. According to a 2017 commentary on the medical community and climate change in JAMA, Jay Lemery, an associate professor of emergency medicine at the University of Colorado School of Medicine, said students are “curious and still in a save-the-world mode. They’re hungry for this information. There is no question the students want to know more. The big challenge, he said is how to get it into a crowded medical school curriculum” (Friedrich 2017). One effort that could help is the relatively new Global Consortium on Climate and Health Education at Columbia’s Mailman School of Public Health, a global network of schools of public health, medicine and nursing organized to help educate health professionals on the effects of climate change (https://www.mailman.columbia.edu/research/globalconsortium-climate-and-health-education). Fostering an interface between public health and traditional medicine, which have historically taken different tracks, could help develop a new cadre of environmentally savvy health care providers. Role of Government Agencies Government agencies have played an important role to promote EHL. The U.S. Environmental Protection Agency (EPA), the Agency for Toxic Substances and Disease Registry (ATSDR), and the Centers for Disease Control and Prevention (CDC) are important players in developing materials and guidelines on environmental health issues that health professionals can access and use. For example, the PEHSUs, which are funded by ATSDR and EPA, provide information and training to health care professionals, as well as the general public, on protecting children and reproductive-age adults from environmental hazards. They also work with federal, state, and local agencies to address children’s environmental health issues in homes, schools, and communities. The PEHSUs conduct conferences, provide online training and webinars, and publish peer- reviewed articles that raise environmental health literacy amongst clinicians and others (Burke and Miller 2011; Lai etal. 2015).

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Fig. 8.3 Graphic from “Rosa and Carlos get Married”

The National Institute of Environmental Health Sciences (NIEHS) is also a key player for both programs and funding. They have helped establish NIEHS/EPA Children’s Environmental Health and Disease Prevention Research Centers whose discoveries have profoundly shaped how the impacts of environmental exposures and child and lifelong health are understood. Each center has a designated physician scientist to ensure that research is translated into practical information for health care providers. Several of the centers have collaborative relationships with PEHSUs to assist in outreach, including to the clinical community. For example, the NIEHS/ EPA funded Center for Integrative Research on Childhood Leukemia and the Environment at UC Berkeley has worked with the Western States PEHSU to develop a program, “Improving Environmental Health Literacy of Young Adults”. This program has produced innovative materials in English and Spanish (see Fig.8.3) based on A Story of Health eBook to enhance adolescent and young adult EHL including a shadow puppet theater video and a comic book. These materials are being used by promotoras de salud (community-based lay health educators) and others to engage their audience in learning about environmental exposures, both prenatal and preconception, which may affect children’s health. Role of Professional Societies For years, pediatric professional societies have been at the forefront of EH counseling, providing practical tools, and championing for increased environmental health curricula in professional schools. The American Academy of Pediatrics (AAP) first issued “Pediatric Environmental Health” (also known as the “Green Book”) in 1999. Now in its

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Third Edition, the book provides information on a wide range of EH hazards as well as practical prevention advice that doctors can give to parents. AAP has been at the forefront of environmental health policy statements as well, such as one on pesticide exposures and children (AAP Council on Environmental Health 2012). More recently, the American College of Obstetricians and Gynecologists and the American Society for Reproductive Medicine issued a committee opinion on “Exposure to Toxic Environmental Agents” calling for “timely action to identify and reduce exposure to toxic environmental agents” (ACOG and ASRM 2013). This was followed by The International Federation of Gynecology and Obstetrics (FIGO) opinion on the reproductive health impacts of exposure to toxic environmental chemicals with recommendations to prevent exposures to such toxic chemicals (Di Renzo etal. 2015). Nurses are another group of health professionals who have been leading the way on EHL in the health professions. The American Nurses Association has a strong effort on EH, and some states have major environmental components in their nurses’ associations, such as Rhode Island. Nurses played a leading role in establishing statewide collaborations such as Maryland Hospitals for a Healthy Environment and Hospitals for a Healthy Environmental in Rhode Island. The Alliance of Nurses for Healthy Environments (http://envirn.org) is an international network of nurses working to, among other things, integrate environmental health into nursing education, greening healthcare workplaces, incorporating environmental exposure questions into patient histories, and providing anticipatory guidance to patients about their exposures. Nurses represent the highest percentage of health professionals who have taken EH courses offered by ATSDR. For instance, of the over 8,000 who have registered for A Story of Health course, over 75 percent are nurses. The percentage of nurses registered for the Pediatric Environmental Health Toolkit course mirrors those numbers. Role of Community-Professional Collaborations Another example of the powerful role of nurses is seen in an asthma education and intervention project. As part of a growing nationwide effort at highlighting environmental causation of asthma, a citywide program in Providence RI funded by the Robert Wood Johnson Foundation got 972 families to participate in the Providence School Asthma Partnership over 3 years. This included after-school asthma program at their child’s school, with parents and children attending concurrent workshops. Additional evening programs were held for parent support, both in English and Spanish. In this low-income population, 74% of parents were Latino and 45% non-English speaking; 77% of the children were on Medicaid. The highly successful program greatly reduced asthma symptoms, use of oral steroids, emergency room visits, hospital admissions, and school absence. The deep involvement of all school nurses in the city and the leadership of Rhode Island Hospital’s Pediatrics Department, combined with community- rooted work, resulted in health professionals new EH knowledge and showed them how strong parental involvement improved medical outcomes (DePue etal. 2007). Parental involvement is key for child health as the parents are in partial control of the environment that their child is exposed, and can advocate for preventive measures in school siting, construction, and choice of cleaning chemicals.

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Fig. 8.4 Healthy child graphic

The free, peer reviewed, Pediatric Environmental Health Toolkit app was created by the Pediatric Environmental Health Specialty Units (PEHSUs) and Physicians for Social Responsibility and endorsed by the American Academy of Pediatrics. It provides access to simple ways to incorporate anticipatory guidance on environmental health during well child visits. This web app covers: • Brief overviews of environmental hazards to health found in the air, water, food, consumer products, and elsewhere. It includes sections on health effects, routes of exposure, and prevention strategies. • Key concepts in children’s EH inculding the unique vulnerabilities of children, how the chemical, built and food environments influence health, and environmental justice. • Anticipatory Guidance keyed to age groups associated with routine visits from prenatal through the teenage years.

Role of Nonprofit Organizations Nonprofits such as Physicians for Social Responsibility (PSR) have been instrumental in building EHL by providing health professional trainings in environmental health. The PSR developed, in conjunction with the UCSF PEHSU (now Western States PEHSU at the University of California San Francisco, and the PEHSU network), developed the clinical tool Pediatric Environmental Health Toolkit, endorsed by the American Academy of Pediatrics (AAP). It provides reference and anticipatory guidance materials to both providers and patients including “Rx slips” for patients to take home with easy prevention tips. A Toolkit application (“app”) followed from that (See Fig.8.4.). PSR also regularly conducts both science and advocacy trainings for health professionals that enables them to bring their expertise to policymakers at the local, state, regional and federal levels and take the next step in EHL.

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Fig. 8.5 A story of Health

A Story of Health eBook/online continuing education (CE) course focuses on multiple environmental contributors to health and how they interact with genetics across the lifespan. By grounding the science of health in stories of fictional people, their families, and communities, readers can explore risk factors for illnesses that are a serious problem for the health of our nation. A Story of Health examines how a wide range of factors have an impact on our health every day, including “the air we breathe, the water we drink, the food we eat and our social and economic circ*mstances.” Some examples are: how early life stress can magnify the effects of exposure to air pollution and make asthma worse; how some genes can make children more susceptible to toxic substances like pesticides, which may contribute to the onset of developmental disabilities; how a common nutritional supplement can reduce the risk of childhood leukemia and other disorders: and how exposure to lead can affect fertility. Practical actions to promote health and prevent disease are features, from the personal to the policy levels. Illustrations, graphics, and videos, pop-ups with essential “key-concepts,” and links to a wide range of hundreds of additional resources and scientific papers enrich each story. Current chapters, including those on asthma, developmental disabilities, childhood leukemia and infertility/reproductive health, are available to download for free on the web sites of the Western States PESHU and CHE. Health professionals can register for free CEs through the Centers for Disease Control and Prevention (CDC) with the Agency for Toxic Substances and Disease Registry (ATSDR) hosting the CE accreditation pages. The cooperation among federal and state government agencies, academics and nonprofit organizations has enabled them to draw on and leverage each other’s expertise and resources during development and their different networks during the important outreach phase.

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Another nonprofit that has been at the forefront is the Collaborative on Health and the Environment (CHE), a project of the nonprofit Commonweal education and research institute. CHE collaborated with the Western States PEHSU, ATSDR, the Office of Environmental Health Hazard Assessment, California EPA (OEHHA), and the Science and Environmental Health Network (SEHN), in the development of A Story of Health, a multimedia online eBook designed to harness the power of storytelling to increase EHL for health care professionals (see Fig.8.5. Availability of free Continuing Education (CE) credits has encouraged over 8000 health care professionals to register for it. Evaluations have been overwhelmingly affirming. Responses from one quarter indicate that over 89 percent say they will apply the new knowledge to develop strategies and interventions in their practices. Role of Communities Communities affected by environmental hazards have been a key source of inspiration and education for clinicians. Local residents in these communities are often the ones who identify disease excesses and clusters, point out local hazardous sites or exposures, and provide the felt experience of living in a contaminated community. Working collaboratively with community-based organizations has been shown to be a valuable way to build and raise EHL of healthcare professionals. Participation in CBPR projects, environmental justice organizations’ outreach, environmental health research centers, mainstream health settings, and toxics-affected communities help to shed light on training needs and to provide experiential for healthcare professionals. Environmental CBPR projects have a long tradition of involving health professionals, and some of NIEHS’s early Requests for Proposals (RFA)s required projects to include health professionals on the team (Baron et al. 2009). Especially when doing report-back to communities and individuals, research teams have understood the need to have health professionals as part of their projects, to provide trusted responses to questions about the meaning of the research findings (Curtis and Wilding 2007). As part of the growing “advocacy biomonitoring” movement that centers around the “embodied experience” of the body burden, i.e. the contaminants found in their bodies (Altman etal. 2008), Physicians for Social Responsibility conducted a biomonitoring study of physicians and nurses aimed at helping health professionals grasp that aspect of toxic contamination (Wilding etal. 2009). In the outreach work of environmental justice groups such as Alaska Community Action on Toxics (ACAT), health professionals have been an important audience. ACAT produced the Environmental Health Care Toolkit aimed at community health aides, who are often the only health professionals in remote Alaskan villages. ACAT launched a series of Bulletins that they distributed for free to all physicians in the state, one on Diabetes: The Role of Persistent Toxic Chemicals in this Complex Disease and another on Body of Evidence: Reproductive Health and the Environment. Most recently, Northeastern University’s Superfund Research Program, Puerto Rico Test Site to Explore Contamination Threats (PROTECT) updated that Bulletin and added a Puerto Rican context to a third edition, for distribution to health professionals

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in Puerto Rico. Akwesasne Mohawks who played a central role in gathering data in a CBPR project on their tribal lands were able to show health professionals the importance of lay involvement and to teach them about aspects of EH that they were less aware of (Schell and Tarbell 1998). Further, the leadership role that Akwesasne midwife Katsi Cook played in disseminating the research findings provided a lesson on how non-physicians could take a leading role in improving community EH (Hoover in press). Northeastern University’s Children’s Environmental Health Center, Center for Research on Early Childhood Exposure and Development in Puerto Rico (CRECE) and Superfund Research Program, PROTECT, collaborate on a variety of surveys to learn about EH knowledge, and on educational programs to expand EHL for physicians, nurses, and early intervention speech-language pathologists (the latter described below). They also collaborate extensively with March of Dimes on preterm birth, providing education sessions on potential environmental factors such as phthalates. The clinic-centered nature of the PROTECT Cohort (over 1300 recruited, with goal of 1600) and CRECE cohort (over 120 recruited, with goal of 600) ties together regular clinical visits with research activities and thus allows for extensive engagement with health professionals who would not otherwise be exposed to EH research findings. Frequent research presentations to clinics and hospitals build on this to provide a wealth of education for providers (Velez Vega etal. 2016). While this example may seem more in the realm of provider-initiated efforts, it is largely a result of the March of Dimes’ initial pressure for research on the extraordinarily high level of pre-term birth in Puerto Rico, and this work continues to be guided by a community advisory board that involves many community-based organizations. Toxics-affected communities often find medical professionals lacking in specific knowledge of their local exposures of concern. While communities often get relevant information from local, state, and national EH and justice organizations (e.g. Toxics Action Center, Center for Health, Environment, and Justice), they sometimes mobilize local health professionals. Portsmouth NH residents learned of extremely high levels (up to ten times higher than NHANES) of per- and polyfluorinated compounds (PFAS) in well-water at the Pease Tradeport, formerly an Air Force base, and now home to 250 businesses, two daycare centers, and 9,525 employees. Activists formed Testing for Pease, which successfully lobbied the state health department to test blood of 1,575 people, yielding mean levels higher than NHANES (for one chemical, PFHxS the mean level was nearly four times the NHANES level). Activists found that medical professionals were largely unaware of potential health effects of these chemicals, but through such testing efforts, were able to educate some of them sufficiently so that they assisted in a research proposal to examine PFAS effects on children’s immune function. The activists are working to provide health care professionals with information about potential health effects, which may improve patient care by alerting physicians about heightened risk for certain diseases (e.g., kidney cancer) or suppressed children’s DTaP vaccination responses from their PFAS exposures. Activists plan to develop a fact sheet for doctors and nurses that can be used not only in Pease but in many PFAS-affected communities around the US and internationally (Amico etal. 2016).

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Along the U.S.-Mexico border, a collaboration was formed between the University of Washington, the California Environmental Health Tracking Program, and Comite Civico Del Valle, a local social and environmental justice non-profit organization, to develop tools for real time monitoring of PM2.5 and PM10 in the air (particulate matter at, respectively, 2.5 microns and 10 microns diameter) in Imperial County, California (see Chap. 5). PM2.5 and PM10 are both fine inhalable particulate matter that can become trapped in the nose, throat, and lungs and cause adverse health outcomes (see Chap. 4). The project was developed in response to the poor air quality in the region, and high rates of poverty, asthma, and asthma related ER visits (California Environmental Health Tracking Program 2017). The California Environmental Health Tracking Program, a program developed by the Public Health Institute and the California Department of Public Health, created a website where community members can report environmental hazards and access real time air quality data. The website, IVAN (Identifying Violations Affecting Communities) contains a list and map of 40 air monitors in the community and allows users to select the monitor nearest them and, also provides an option to receive air quality alerts via email (ivan-imperial.org). The air monitoring system is beneficial and innovative because it allows for a rapid dispersion of data on EH hazards in Imperial county and equips both community members and stakeholders with data on PM2.5 and PM10, which exacerbates asthma. Such data allows residents and health practitioners to incorporate environmental data into health assessments.

J oint Efforts: EHL atthe Intersection ofProfessional Initiation andPublic Initiation An interesting example of strengthening EHL from both directions is seen in the efforts on environmental factors in breast cancer. From the patient/pre-patient/public end, a vibrant environmental breast cancer movement developed that sought prevention of environmental exposures (McCormick etal. 2003; Brown etal. 2006). From the health professional end came a growing number of environmental health scientists who developed a growing research program on this subject (Brody etal. 2014a; b; Rodgers etal. 2018). The intersection of the lay and professional worlds here is a special case of EHL that may be its most significant form.

ringing inaNew Health Professional Group: Speech- B Language Pathologists andEarly Intervention Workers Early Intervention (EI) Speech Language Pathologists (SLPs) can play a major role in educating families on EH hazards, as they often spend their sessions in the family’s home or childcare facility, where the child could potentially be exposed to toxicants daily that can negatively impact their development. Therefore, SLPs are

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Fig. 8.6 The importance of environmental influences on child development, and SLPs perspective

uniquely suited to educate both caregivers on the importance of EH and also treat the neurodevelopment outcomes that are evident in children exposed to various toxicants. In order to understand how much SLPs working in EI know about EH, the Community Outreach and Translation Core of Northeastern University’s Children’s Environmental Health Center conducted a needs assessment by posting an EH link survey, custom tailored to SLPs working in EI, on the American Speech, Language, and Hearing Association’s Early Intervention Community website (2500 members). One hundred fifty-eight participants completed the survey (Zimmerman etal. under review). Those surveyed had an average of 12.85years of experience working as an SLP and 7.9years working in EI.A majority (60%) of SLPs reported that they did not receive specific training regarding the effect of environmental exposures on child development. Twenty-six percent of those surveyed reported seeing 2-to-4 children that, to their knowledge, have been affected by environmental exposures in the past year; 41% reported seeing 5 or more children affected. Regardless of training, a vast majority (78%) of the SLPs surveyed think that the role of environmental influences on child development is very important (Fig.8.6). Twenty-four percent of respondents always consider EH factors during EI assessment or treatment, 26% usually consider it, 10% consider it half the time, 32% consider it sometimes, and 7% never consider it. SLPs were also asked what amount of control they had over environmental health hazards; a majority reported thinking they had some control over EH hazards, see Fig.8.7. SLPs reported talking to parents/caregivers about diet/food choices, housing/ home environment, school/childcare environment, and drugs. Smoking and lead exposure were overwhelmingly the two most prevalent specific environmental exposure issues that SLPs believed impact the clients they treat. Sixty-one percent of SLPs noted some level of dissatisfaction with their level of training about environmental exposures and their effect on child development. Sixty-four percent were dissatisfied regarding their feeling of preparation to be a resource in the

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Fig. 8.7 How much control do EI SLPs have over environmental health hazards?

community if a concern about environmental health were ever raised in the community in which they work. In fact, 56% of the SLPs do not feel as if they are prepared to be a health advocate about environmental exposure concerns within their community. Only half felt somewhat confident that they would be able to find resources about environmental health factors and outcomes. When given the opportunity to share what specific areas of environmental health they would like to learn more about, the answers included poor nutrition, pesticides, drug use, household cleaners and chemicals, air pollution, and GMOs. Based on this survey, it was evident that there is a need for more formal education regarding EH and SLPs working in EI.To address this need, 26 SLPs and 22 master’s students in SLP attended a CE event and took pre- and post-environmental knowledge tests to ensure that they gained a better understanding of the effect of environmental exposures on children as well as the role an SLP working in EI can play regarding environmental exposures by attending the CE event. All participants did significantly better on the test after the presentation, see Fig.8.8 (Zimmerman etal. under review). These findings indicate that the EI SLP community lacks an understanding about environmental exposures and their subsequent effects. However, based on the success of the CE event, it is evident that, given educational opportunities, SLPs can become more educated and further cognizant of the effects of environmental exposure, as well as their role as clinicians working in homes with families. Expanding an event like this to other allied health professions such as physical therapy, occupational therapy, and nursing would be beneficial since all provide key information and guidance to families. Given the success with the EI SLPs, the short pre- and post-test approach to assessing EH knowledge can be a useful model for these other groups as well. While nurses are often the most EH-aware, recent work in replicating the SLP education/evaluation with MS nursing students found low EH knowledge.

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Fig. 8.8 Pre- and Posttest scores of the entire group (p

Environmental Health Literacy PDF - AZPDF.TIPS (2024)

References