Community-Based Participatory Research in Practice-Based Research Networks

In the words of the English wit G.K. Chesterton, “If a thing is worth doing, it is worth doing badly.” In this issue of The Annals Westfall et al describe the current state of Community Based Participatory Research (CBPR) in the world of Practice Based Research Networks (PBRNs). The picture is as varied as the networks themselves and the communities they serve. The only commonality I see is that most of us have heeded Chesterton’s advice.

Some have wholeheartedly adapted the CBPR model with the conviction that it represents an important sea change in how and for whom research is conducted. , And while there is little outspoken dissent, others consider CBPR to be another unfunded mandate that only requires rarely-fulfilled “boilerplate” promises on the PHS 398. For most, the truth likely lies in the broad continuum between these extremes. Like Community Oriented Primary Care (COPC) before it, CPBR may be another compelling idealized model that is drastically altered by the ugly facts on the ground. And like COPC, and indeed like Family Medicine itself, CPBR maybe worth doing badly rather than not at all.

I encourage you to read the online supplement to the article describing the High Plains Research Network (HPRN)’s experience with their Community Advisory Council (CAC). I initially watched the birth of the CAC with curious bemusement. But I now see their radical metamorphosis, from a clever grantsmanship maneuver into an important enterprise, as a revolutionary challenge to how research is conceptualized, conducted, and disseminated. Of course, they have had advantages: access to scarce dedicated resources for CBPR and, especially, an actual community with well-demarcated geographical, political, economic, and cultural boundaries. The mind reels at any attempt to describe my practice’s “community” (not to mention our PBRN): Russians, Afghanis, Iraqis, Pakistanis, Ethiopians and Eritreans, Bosnians and Herzegovinans, African- Americans, Hispanics of every conceivable national origin, and Caucasians; the homeless, suburbanites, ex-burbanites, and hip loft-dwellers; and every conceivable economic class from unemployed single mothers to corporate executives; all stretched over 4500 square miles. Is this a “community”, and can it have meaningful and equitable representation?

CBPR is in its infancy. Family Medicine and I are both in our 37th year and we’re still struggling to get it right. But for CPBR to meet its full promise, we must respond not with struggle but with letting go. We will have to let go of established norms, of cherished definitions of research, of ways of doing business, of our “researchy language” and “objective detachment”, of our comfort zones, of control. I’m reminded of those revelatory moments in practice when, through humility and shared vulnerability, we suddenly become human to our patients. Sometimes the relationship deteriorates and a distance grows between us. But usually, it blossoms, and we become more than just “doctor and patient.” And we both benefit from a relationship that exists on a whole new level.

And so I look forward to your responses to the fundamental questions left unanswered about CBPR: Are PBRN’s participatory? Should they be? How should we define the “C” in CPBR? Should efforts at including CBPR elements be required, as they are for race, gender, and ethnicity? How should we deal with such seemingly irrevocable conflicts community advisory groups and funding agencies, a PBRNs’ practices, or even IRBs? How do we ensure that diverse communities have equal representation? How do we support these efforts on a long-term basis, both financially and within the greater “community of research”? Is fitting CBPR into pre- existing PBRNS and an exercise in square peg/round hole futility? And finally, is CBPR really worth doing badly, rather than not at all?

1. Westfall JM. Van Vorst RF. Main DS. Herbert C. Community-Based Participatory Research in Practice-Based Research Networks. Annals of Family Medicine. 2006;4:8-14.

2. Macaulay AC. Ryan JG. Community needs assessment and development using the participatory research model. [News] Annals of Family Medicine.2003;1:183-4.

3. Potvin L. Cargo M. McComber AM. Delormier T. Macaulay AC. Implementing participatory intervention and research in communities: lessons from the Kahnawake Schools Diabetes Prevention Project in Canada. Social Science & Medicine.2003;56:1295-1305.

4. Williams RL. Motherhood, apple pie, and COPC. Annals of Family Medicine.2004;2:100-102.

Peter C. Smith, MD, Assistant Professor of Family Medicine, University of Colorado Health Sciences Center; Director, BIGHORN research network, Peter.Smith@UCHSC.edu

Competing interests:   None declared