The Promise of Community-Partnered Participatory Research

To mark PCORI’s third anniversary, we invited representatives of three of our key stakeholder communities – researchers, clinicians, and patients – to submit guest blogs talking about some of the experiences that have led to their interest in patient-centered outcomes research and their hopes for this field. In this blog, a researcher and a community advocate talk about the origins and evolution of one such project that has had a major impact on their community. The views expressed in this blog are those of the authors and not necessarily those of PCORI.

Kenneth Wells: PCORI supports research that boldly puts patients and communities first, both in priorities for research and improved services. We began such work 10 years ago with the goal of improving outcomes for depressed clients in under-resourced communities. The most recent phase of the work is supported by PCORI funding. Sharing the story of this project illuminates the prospects for patient-centered comparative effectiveness research. The findings represent a victory for a community and academic partnership.

We are often asked: How did you do it? Where and how did you begin? When did you engage patients and stakeholders? Who did what when?

Who We Are and How We Got Here

Kenneth Wells: Prior to 2003, I was a traditional health services researcher.  After training in the Robert Wood Johnson Foundation’s Clinical Scholars program, I became an investigator at RAND, working on projects addressing mental health. In RAND’s Medical Outcomes Study, I learned that primary care often fails to appropriately recognize and treat depression in patients, particularly members of minority communities, even though long-term depression has an impact on daily functioning as severe as that of most of the common chronic conditions. From our data, we predicted that by achieving even half of the levels of care recommended by guidelines, outcomes could improve four- to five-fold at modest (10 to 15 percent) cost increases.

This led to Partners in Care, a trial in managed, primary care settings that compared enhanced usual care to implementation of evidence-based quality-improvement programs that support practice redesign to improve recognition of, and services for, depression. We found that the intervention improved health and employment outcomes, particularly for minorities, up to 10 years after initial 6- to 12-month interventions. Colleagues advised that having discovered the effect, it was up to me to do something about it. I immediately realized I would need the help of the community; I asked Loretta Jones to lunch.

Loretta Jones: I am a community advocate who is passionate about improving the health of my community of South Los Angeles as well as other under-resourced communities. When Ken Wells invited me to lunch to talk about involving the community in addressing the problem of depression, I was interested, but skeptical. What would the community say? Would Ken respect the community and share decision making to make a partnership work? After he told me about his findings, I said I would talk to colleagues and get back to him. I needed to make sure that the issue was important to the community. I learned that people viewed depression as a major issue that no one talked about, a “silent monster” that was “killing our community.” We had business to do. But could we make it work together?

What We Do

We followed my model of Community-Partnered Participatory Research developed by Healthy African American Families with the support of the Centers for Disease Control and Prevention and Keith Norris, MD, FACP, of Charles R. Drew University of Medicine and Science. We set up a council to frame the issue. Before we knew it, we had more than 15 community-based agencies at the table, including the Los Angeles County Department of Mental Health Services, children’s social and health programs, and prisoner re-entry, drug abuse, and arts programs. We talked about what the community wanted and what clients needed.

Ken described his research and brought resources to the table, including a visit by the deputy director of the National Institute of Mental Health, recalled to this day, as a historic event in the community. We talked openly about whether we could trust Ken, a white, male university researcher. Ken said that he felt honored to be trusted enough to have this issue discussed in his presence.

Things were not always easy. We had knock-down drag-out arguments over ethics, institutional review boards, and other issues. Ken took my advice to use techniques that we commonly apply to encourage discussion in meetings as tools to keep our partnership secure. For example, we sometimes held onto giftwrap ribbons with stars to remain connected and have fun as we worked through hard issues. Ken kept coming back to us and bringing other people along. As more community members came, I knew the partnership was working, and it was exciting to see that growth.

How We Do It

Wells and Jones: We learned how to work as partners to gather and integrate community and academic input, using engagement activities to facilitate discussions in which stakeholders participate as equals. We asked: How do we talk about depression? What services should be improved? What are potential outcomes? At our initial public conference, we had expected about 70 people to attend, but more than 500 showed up.

Witness for Wellness became a multiyear effort that engaged South Los Angeles in addressing depression as a community. We hosted poetry readings and photography exhibits with audience surveys to understand how to engage community members in talking about depression. We worked with social services agencies to explore how to improve services and with policy makers to find opportunities for community members to work directly on improving access.  We modified the materials we had created earlier and developed new materials to provide information and education about depression.

As a community, we then decided to examine the added value of this community-engagement approach to improving depression services over and above the more traditional agency technical assistance approach that we had previously used.  In our new research study, Community Partners in Care, we found that the community-engagement approach was more effective at improving depressed clients’ mental health–related quality of life and physical activity and reducing behavioral health hospitalizations and risk factors for homelessness. The engagement approach also shifted outpatient services for depression away from mental health specialty medication visits toward services provided by primary care facilities, faith-based organizations, and park and recreation community centers.

Where We're Going

With our current PCORI funding, we are now examining long-term outcomes for clients who received services for depression through the community-engagement approach. We are also asking a key PCORI question: How can community engagement be adapted to promote patient co-leadership in partnered research and improve responsiveness of services to patients’ outcome priorities?

We don’t have the answers yet, but we are using our client leaders, who have an acknowledged history of depression or other mental illness, to sponsor new client leaders, who will then be nominated by community coalitions and our council leaders. We also propose “book clubs,” in which stakeholders review and exchange perspectives on the project’s research findings, client and provider narratives, and poetry and other creative works on related themes.

We look forward to sharing the ongoing story of our work. We would also love to learn what strategies others are using to create partnerships between academics and communities to solve challenging health and health care problems.

From our research, we have learned that genuine academic-research partnerships can improve health and address seemingly intractable social problems. We are pleased that PCORI will enable us to learn about the duration of those benefits. The PCORI-funded work will also provide information to inform healthcare systems and community agencies about how they can work together to support clients in under-resourced areas improve those outcomes that they most value—whether mental health, physical activity, or risk for homelessness. This, we hope, will be a transformative step for our communities.

Audio selections were taken from the recent webinar: Promising Practices of Meaningful Engagement in the Conduct of Research