True Community Engagement—and Guidance
The original project and the PCORI-funded extension were guided by a leadership council made up of academic and community partners, including leaders from about 35 social service agencies. The council directed every major research decision, soliciting and weighing advice from the broader community. The council also took charge of explaining the study and its findings at community and scientific meetings.
Community partners on the council helped identify the participating organizations, which included formal social-service agencies, like primary care practices, homeless shelters, and prisoner reentry programs—but also senior centers, hair salons and barber shops, exercise clubs, and faith-based organizations.
“They were what the community referred to as ‘trusted locations,’” say Jones. In underserved communities, she explains, these sites provide an informal system of mental health support. For example, she says, “The hair salons and barbershops are where people talk about their issues.”
Staff members at many of these sites are aware of the role that they play, Jones and Wells explain, and welcomed a chance to learn evidence-based practices for depression evaluation and to gain a better understanding of therapeutic options, so they can explain them to clients. “We’re enhancing what can be done in the community systems that already exist,” says Wells.
At the end of the year-long original study, which encompassed about 1,000 recipients of services, the academic-community partnership found that the community-network-building approach was associated with better outcomes than support to individual organizations. Behavioral hospitalizations were half as likely, clients were more physically active, and risk factors for homelessness were observed less often.
Williams’s depression now under control, she sits on the project’s leadership council, offering the perspective of a former client. She credits the research with helping her better understand the illness and giving her the courage to speak out and educate others. “I don’t have to be ashamed anymore about what happened to me,” she says. “I can talk about depression freely.”
I don’t have to be ashamed anymore about what happened to me ... I can talk about depression freely.
Learning From the Community
Engaging with the community led to some surprises for the partners. Originally, Jones, Wells, and the council had planned to compare how well each approach improved clients’ clinical symptoms of depression. From broad community input, they learned that many clients place equal or greater weight on finding and keeping employment, avoiding homelessness, dealing with family issues, and maintaining physical health. In response to that input, says Wells, “we shifted the focus of this project toward those goals.”
The PCORI-funded extension will explore how to support the community infrastructure so that the gains made by individual clients will persist. It will investigate how community systems can address clients’ diverse needs, from mental and physical health issues to homelessness. One goal is to learn how clients with many needs decide which care outcomes are most important to them and how agencies in the community can best meet these needs. The PCORI study will use community partners to interview clients and providers about their experiences in receiving and providing care. It will also expand the project’s leadership council.
Williams believes that the work already has brought about positive change for herself and her neighborhood. Thanks to community workshops sponsored by the council, people are better informed about where they can go for help and more willing to seek it. Most welcome of all, the old silence about emotional difficulties has given way to dialogue.
“It’s encouraging,” says Williams. “Now, people come to the workshops, they come to the symposiums, and they find out what’s available. Everyone’s at the table.”
Long-Term Outcomes of Community Engagement to Address Depression Outcomes Disparities
Principal Investigator: Kenneth B. Wells, MD, MPH
Goal: To reduce disparities in depression-treatment outcomes by providing information and improving services in inner-city minority communities.
Posted: February 5, 2014