Community-Based Participatory Research: Advocacy or Approach?

Community-Based Participatory Research for Health: Advancing Social and Health Equity. 3rd ed. Edited by Nina Wallerstein, Bonnie Duran, John G. Oetzel, and Meredith Minkler.

San Francisco, CA: Jossey-Bass; 2018. 480 pages; $85.00 ISBN-10: 1119258855 ISBN-13: 978-1119258858

Although the concepts from which community-based participatory research (CBPR) emanated developed in the mid-20th century, CBPR is far from the dominant health research paradigm. An August 2018 PubMed search for CBPR yielded only 5965 (of almost 30 million) citations; a search for “clinical trial” yielded more than 1 million results. CBPR simply means doing research with (not just in or on) communities. Engaging with communities on research has its origins in movements for social justice and change in which communities can transform their own conditions. The methods of CBPR are still being developed, terminology is still debated (“participatory” vs “engaged” vs “action” research), and research continues to compare the outcomes of CBPR to more traditional approaches.¹ Questions remain about whether it is feasible² or useful³ and whether researchers are ready for it.⁴ Not all health research needs to be CBPR. There will always be a need for biological discoveries and placebo-controlled trials. But we need CBPR to develop interventions that will improve health for all, to address the gap between what is known and what is implemented, and to eliminate disparities in the distribution of such improvements.

One decade after the second edition, this third edition of Community-Based Participatory Research for Health is rich in its coverage of how approaches have developed—their conceptual bases and research designs—while also providing numerous practical examples of how CBPR has been implemented. The subtitles added to each edition underline changes in the field, progress, and sophistication. The first edition had no subtitle. The second edition was subtitled From Process to Outcomes, a straightforward step highlighting that CBPR could effect change. The current edition is subtitled Advancing Social and Health Equity; it reflects a maturing field that is both an approach for generating knowledge that can improve health and a movement to advance health equity. It also recognizes and incorporates a large body of previous work by the editors, authors, and others, who have laid a solid foundation for the field.⁵ Some of these contributions hint at the educational and social justice roots of the approach.⁶

THEORY, GUIDANCE, AND EXPERIENCE

Unlike a standard statistics or epidemiology textbook that tells the reader how to implement a logistic regression or calculate a relative risk, the content of Community-Based Participatory Research for Health reflects the methodology: it teaches by example. Lessons emerge from the shared experiences of those involved in the work. The first part of the book reviews the history and principles of CBPR. The emphasis is on recognizing the history of power and on having people who will be affected by research not only participate in it but also participate in leading it and in all parts of the research in truly equitable partnerships.

The second part of the book addresses a key context for any human health research: racism, power, and privilege, and their relationship to trust in community research partnerships. It addresses such issues as funding for the community (not just the university) and recognition for community members as authors and leaders.

The third part of the book covers the implications of the conceptual frameworks of CBPR for community research partnerships. It emphasizes how the context—political, social, cultural, and historical—for any research is critical for any successful partnership and therefore central to CBPR. It also provides examples of how failures—fractured partnerships—can happen and provide valuable information. The remaining sections of the book are examples of CBPR practices, including intervention development, research design, ethical challenges, and lessons learned from doing. Thirteen appendices cover special topics and tools.

RESEARCH APPROACH OR ADVOCACY?

This book has something for both experts and novices. But for novices, an initial read may feel like an indoctrination into a club or cult, or at least a new culture. CBPR has its jargon, all of which is well defined and useful, even important, for communicating what it is and how to do it. But it is jargon nonetheless. “Lived experience” is an example, and the book puts it in context so the term and its centrality to CBPR become clear. Authors assert that CBPR is the research operationalization of health equity and that CBPR is not a research method; rather it is an orientation and even a “liberatory social movement.”⁷ Such assertions frame CBPR simultaneously as an approach to health research and as advocacy for social change and health equity.

Paradoxically, in the book’s quest to describe CBPR as inclusive, welcoming, and flexible with no one right way to implement it in all cases, the reader can feel excluded and sense that there is one right way. It feels authoritative, written by experts proclaiming that it is those with lived experience who are experts. There is some circularity to such assertions. To be fair, this is clearly not the authors’ intent (in fact, they say they are not the “CBPR police”); this paradox reflects the challenges in doing CBPR, and it may say more about readers than about the authors. CBPR is never easy. In fact, as the book suggests, if CBPR is done well, it is not easy, it should not feel easy, and it demands constant reflection and reevaluation; that reevaluation includes self-criticism and evaluation of the methods themselves and their application.

As one might expect, the book does a terrific job of discussing how academic institution-based researchers can truly partner with community-based researchers and participants. What it does less well is bridge the gap between academic CBPR researchers and the rest of the academic research community. There are pages on academic positions of people of color, the often frustrating challenges that arise when seeking ethical approval for studies that do not neatly fit traditional biomedical designs, and funding successes and challenges. However, making CBPR a mainstream approach will require efforts in true partnership with academic and funding agency leadership, researchers, and educators. In an introductory chapter, the authors seem to pit CBPR against “evidence-based approaches.” If anything, that dichotomy may further the idea that CBPR is soft science when in fact it is “hard” (both difficult to do and rigorous). CBPR yields evidence, and classic efficacy studies do too. Extolling the complementary role of all fruitful approaches to generating knowledge about how to improve health would likely help CBPR diffuse and take its rightful place.

CBPR is not the only way to do health research. And it is not the only way to achieve social change, address racism and privilege, empower communities, change power dynamics, revitalize cultures, and eliminate health disparities. Its comparative effectiveness for such goals requires study. But even if it cannot achieve such lofty goals, it can provide real evidence to improve health, and it should be more commonly employed than it is now. This book is a valuable resource for achieving that end. Yet, as the authors would be the first to recognize, a book on a shelf written by professors may be valuable and even necessary but will not be sufficient to make major change in any community, even a community of professors and scientists. Just as successful and meaningful CBPR requires partnerships with communities, the spread of CBPR itself will take partnerships with scientific colleagues, mentors, editors, grant proposal and manuscript peer reviewers, and training program directors as well as investment to support the endeavor; this will allow it to rise above the din of precision medicine and other individual health- and biology-focused approaches.

We are headed in that direction, and this book can help take us there. To use the language of traditional science, CBPR is a methodology, but for public health professionals, it should also be a way of being, an orientation, an approach, and a way to advance health by doing research that matters and can improve health equity. We should advocate its diffusion as a way to achieve those goals. CBPR is both an approach and advocacy.