Community-Based Participatory Research for Health

Advancing Social and Health Equity

Nina Wallerstein, Bonnie Duran, John G. Oetzel, Meredith Minkler

• Publisher: Jossey-Bass
• Year: 2017
• ISBN:
  9781119258872
• Edition: 3
• Topic: Medicine
• Subtopic: Public Health, Administration & Care

The definitive guide to CBPR concepts and practice, updated and expanded

Community-Based Participatory Research for Health: Advancing Health and Social Equity provides a comprehensive reference for this rapidly growing field in participatory and community-engaged research. Hailed as effective by the Centers for Disease Control and Prevention, CBPR and CEnR represent the link between researchers and community and lead to improved public health outcomes.

This book provides practitioner-focused guidance on CBPR and CEnR to help public health professionals, students, and practitioners from multiple other clinical, planning, education, social work, and social science fields to successfully work towards social and health equity.

With a majority of new chapters, the book provides a thorough overview of CBPR history, theories of action and participatory research, emerging trends of knowledge democracy, and promising practices. Drawn from a ten-year research effort, this new material is organized around the CBPR Conceptual Model, illustrating the importance of social context, promising partnering practices, and the added value of community and other stakeholder engagement for intervention development and research design. Partnership evaluation, measures, and outcomes are highlighted, with a revised section on policy outcomes, including global health case studies.

For the first time, this updated edition also includes access to the companion website, featuring lecture slides of conceptual and partnership evaluation-focused chapters, with resources from appendices to help bring CBPR concepts and practices directly into the classroom.

Proven effective year after year, CBPR has become a critically important framework for public health, and this book provides clear reference for all aspects of the practice. Readers will:

• Examine the latest research on CPBR, and incorporate new insights into practice
• Understand the history and theoretical basis of CPBR, and why it has been so effective
• Reflect on critical issues of racism, power, and privilege; trust development; ethical practice within and beyond IRBs; and cultural humility
• Learn new partnership evaluation and collective reflection strategies, including measures and metrics, to enhance their own practice for improved health and social equity outcomes

PART 1
INTRODUCTION: HISTORY AND PRINCIPLES

CHAPTER 1
ON COMMUNITY-BASED PARTICIPATORY RESEARCH

NINA WALLERSTEIN, BONNIE DURAN, JOHN G. OETZEL, AND MEREDITH MINKLER

COMMUNITY-BASED PARTICIPATORY RESEARCH (CBPR) has established itself as a valued research approach for its contributions to increasing health equity through an orientation that is community-based, and often community-directed, rather than merely community placed. Increasing demand by communities, tribal nations, governmental and philanthropic funders, and committed academics have altered much of the landscape of research and its production of knowledge by integrating community leaders and members as key partners throughout a community-engaged research process. The W.K. Kellogg Foundation's Community Health Scholars Program (2001) defined community-based participatory research in the health field as “a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change to improve community health and eliminate health disparities” (p. 2).

Reflecting the growing application of CBPR principles and strategies in community development, program design and implementation, and evaluation, we propose a broader definition that still incorporates the use of research and data. “CBPR embraces collaborative efforts among community, academic, and other stakeholders who gather and use research and data to build on the strengths and priorities of the community for multilevel strategies to improve health and social equity.”

Together with many related action, participatory, and community-engaged research traditions, CBPR turns upside down the more traditional applied research paradigm, in which the outside researcher largely has determined the questions asked, the research tools employed, the interventions developed, and the kinds of outcomes documented and valued (Gaventa & Cornwall, 2015). In their new edited book, Budd Hall and Rajesh Tandon, two of the early founders of global participatory research, reiterate the call for knowledge democracy to reclaim the “expertise residing in the world of practice, beyond academia” (Hall, Tandon, &Tremblay, 2015, p. 26).

Although often and erroneously referred to as research methods, CBPR and other collaborative approaches are not methods at all but an orientation or a fundamentally different approach to research. As Cornwall and Jewkes (1995) classically pointed out, what is distinctive about this approach “is not the methods but the methodological contexts of their application; the attitudes of researchers, which in turn determine how, by and for whom research is conceptualized and conducted,” and “the corresponding location of power at every stage of the research process” [italics added, p. 1667].

Central to CBPR and related approaches is a commitment to consciously change the power relationship between researcher and researched, seeking to eradicate the distinction between who does the studying and who gets studied (or decides what gets studied). CBPR, as an overall approach, has been used with every kind of research method (Israel, Eng, Schulz, & Parker, 2013): from qualitative focus groups or ethnographic inquiry, to neighborhood mapping or use of geographical information systems, to epidemiology, and to survey methods. What matters is “the experience and partnership of those we are normally content simply to measure” (Schwab & Syme, 1997, p. 2050) and the creation of a “mutually reinforcing partnership” (Cargo & Mercer, 2008, p. 327).

NEW AND CONTINUING CHALLENGES AND OPPORTUNITIES

In the decade since the publication of the second edition of this book (Minkler & Wallerstein, 2008), CBPR has grown as a field in its effectiveness in creating culture-centered research (Dutta, Anaele, & Jones, 2013), improving external validity and attention to implementation contexts (Yano et al., 2012), honoring practice-based and community evidence (Green, 2006), strengthening reflexive practice (Muhammad et al., 2015), and solidifying connections to communities of color and other marginalized communities to challenge health inequities (Wallerstein & Duran, 2010). However, CBPR faces continuing and new challenges.

Key among these is the stark contextual realities within which we work. Health and social inequities continue to rise to untenable levels, across the United States and globally (Bor, Cohen, Galea, 2017; Marmot & Bell, 2012). Within the United States, structural racism within institutions, such as the criminal justice system, and conscious and unconscious bias still pervade our national consciousness and contribute to the suffering of real people and communities. As this book goes to press, a new and troubling political context in the United States, with grave threats to vulnerable groups, including to undocumented immigrants, the devaluation of science and inquiry, and the threatened withdrawal of federal funding in a wide range of areas, portend real threats to CBPR partnerships and health and social equity. These conditions affect all of us and our capacities to recognize and redress power and privilege differences across academia and communities and agencies.

The research institution is not immune from this context, with historical and current abuse or misuse all too often having fostered mistrust of research within communities who have faced “helicopter” or “drive-by” research when data is solicited, taken, and not returned to the community. “Evidence-based” approaches, those that have received sufficient funding to be systematically evaluated and published in the academic literature, still dominate the acceptable choices for research interventions and privilege internal validity over external validity, or relevance of findings to “real-world” contexts. Such approaches are sometimes unacceptable or non-translatable to other diverse communities. Further, the “evidence-based” approaches that “count” in traditional academic and other research settings often ignore, discount, or erase the “community evidence” and local knowledge necessary to create culturally effective and sustainable interventions. Growing calls for translational research, whose findings can more quickly and effectively be incorporated into practice, programs, and policies, have been critical in beginning to redress such imbalances (Cytron et al., 2014). Yet often, translation is thought to be unidirectional, that is, a one-way or top-down approach to move research results from the academy to the community, rather than as bidirectional, mutual-learning processes.

Despite these challenges, there has been increased visibility of and support for CBPR and community-engaged research (CEnR) in multiple sectors. The Centers for Disease Control and Prevention (CDC) launched its Prevention Research Centers in 1986 with community participation a central part of their mission. The first of the National Institutes of Health (NIH) to fund CBPR was the National Institute of Environmental Health Science (NIEHS), supporting environmental justice research in 1995. NIEHS was followed by multiple other institutes, most notably the National Institute of Minority Health and Health Disparities and the Native American Research Centers for Health, a partnership between the Indian Health Service and NIH.

Since the mid-2000s, there has been additional growth in federal and foundation funding opportunities for CBPR (see Appendix 5). These have included community engagement components within Clinical Translational Science Awards (CTSAs); the Patient Centered Outcomes Research Institute (PCORI), inviting patient, family, and patient advocate engagement; NIH transdisciplinary team science centers that include community partner involvement; as well as leading foundations sponsorship of CBPR training programs (see Chapter 19 and Appendix 5).

Support has become evident through new federal publications, with a recent Institute of Medicine (IOM) call to educate health professionals about social determinants through forming community partnerships for transformational learning (IOM, 2016). This builds on an Office of Behavioral and Social Science Research (OBSSR) report, calling for working with communities to understand the complexities of culture (Kagawa-Singer, Dressler, George, & Elwood, 2015) and a previous IOM call for leveraging community involvement and culture for improved health interventions (IOM, 2012). In 2015, the North American Primary Care Group updated their 1988 policy on responsible participatory research in primary care set...

Table of contents

• COVER
• TITLE PAGE
• TABLE OF CONTENTS
• THE EDITORS
• THE CONTRIBUTORS
• PREFACE
• ACKNOWLEDGMENTS
• PART 1: INTRODUCTION: HISTORY AND PRINCIPLES
• PART 2: POWER, TRUST, AND DIALOGUE: WORKING WITH DIVERSE COMMUNITIES
• PART 3: CBPR CONCEPTUAL MODEL: CONTEXT AND PROMISING RELATIONSHIP PRACTICES
• PART 4: PROMISING PRACTICES: INTERVENTION DEVELOPMENT AND RESEARCH DESIGN
• PART 5: PROMISING PRACTICES: ETHICAL ISSUES
• PART 6: PROMISING PRACTICES TO OUTCOMES: CBPR CAPACITY AND HEALTH
• PART 7: PROMISING PRACTICES TO OUTCOMES: HEALTHY PUBLIC POLICY
• APPENDIX 1: CHALLENGING OURSELVES: CRITICAL SELF-REFLECTION ON POWER AND PRIVILEGE
• APPENDIX 2: GUIDING CBPR PRINCIPLES: FOSTERING EQUITABLE HEALTH CARE FOR LGBTQ+ PEOPLE
• APPENDIX 3: QUALITY CRITERIA OF THE INTERNATIONAL COLLABORATION FOR PARTICIPATORY HEALTH RESEARCH (ICPHR)
• APPENDIX 4: CULTURAL HUMILITY: REFLECTIONS AND RELEVANCE FOR CBPR
• APPENDIX 5: FUNDING IN CBPR IN US GOVERNMENT AND PHILANTHROPY
• APPENDIX 6: REALIST EVALUATION AND REVIEW FOR COMMUNITY-BASED PARTICIPATORY RESEARCH: WHAT WORKS, FOR WHOM, UNDER WHAT CIRCUMSTANCES, AND HOW?
• APPENDIX 7: PARTNERSHIP RIVER OF LIFE: CREATING A HISTORICAL TIME LINE
• APPENDIX 8: PURPOSING A COMMUNITY-GROUNDED RESEARCH ETHICS TRAINING INITIATIVE
• APPENDIX 9: PARTNERSHIP AGREEMENTS: A PRACTICAL GUIDE TO DEVELOPING DATA SHARING, OWNERSHIP, AND PUBLISHING AGREEMENTS
• APPENDIX 10: INSTRUMENTS AND MEASURES FOR EVALUATING COMMUNITY ENGAGEMENT AND PARTNERSHIPS
• APPENDIX 11: PARTICIPATORY MONITORING AND EVALUATION OF COMMUNITY HEALTH INITIATIVES USING THE COMMUNITY CHECK BOX EVALUATION SYSTEM
• APPENDIX 12: POWER MAPPING: A USEFUL TOOL FOR UNDERSTANDING THE POLICY ENVIRONMENT AND ITS APPLICATION TO A LOCAL SODA TAX INITIATIVE
• APPENDIX 13: CBPR INTERACTIVE ROLE-PLAYS: THREE SCENARIOS
• AFTERWORD
• INDEX
• END USER LICENSE AGREEMENT