Photo: Mark Werlin

Concern often exists in the community that academic institutions have an "ivory tower" approach to research. For example, the very language of clinical research, which traditionally refers to participants in research studies as "subjects," connotes an extremely unequal relationship between study participants and researchers.

The Community Engagement Program (CEP) will spearhead an innovative effort to create more collaborative research relationships between UCSF investigators and community members, community-based clinicians, and community health organizations. The CEP will build on an existing foundation at UCSF of community partnerships in clinical research, providing the infastructure and tools to broaden and deepen these efforts.

"One of the fundamental limitations to conventional clinical research is that it tends to study unrepresentative patient populations in artificial clinical settings," says Kevin Grumbach, MD, chair of UCSF's Department of Family and Community Medicine. "And when researchers do have community members and community-based clinicians participate in research studies, researchers don't always follow through to make sure that the study results are shared with the patients who participated in the study or with the clinicians who recruited the patients."

The CEP will rely on three primary points of contact with the broader community:

The first is integrated delivery systems, including: Kaiser Permanente (which embarks on hundreds of funded studies and trials each year); the Community Health Network of the SF Department of Health (which predominantly serves the uninsured, minorities, and other vulnerable populations); and the San Francisco Veterans Affairs Medical Center (the premier research institution of the US Department of Veterans Affairs). All of those institutions already have staff and faculty that collaborate with UCSF researchers and/or hold UCSF faculty positions.

The second point of contact is community-based clinicians who are interested in collaborating on research studies and having their practice settings serve as "real world" laboratories for clinical investigation. UCSF sponsors several research networks, involving a broad array of health professionals, throughout Northern California, including networks focused on primary care, HIV, reproductive health, oral health, mental health, cancer, substance abuse, and community pharmacies.

The third point of contact will be with community members themselves and the neighborhood organizations serving these individuals. A priority of the CEP will be to strengthen research partnerships with members of disadvantaged communities so as to promote clinical research that focuses on eradicating health disparities. This work will be integrated into the UCSF University-Community Partnership Program, a new initiative by the Chancellor's Office to support civic engagement.

While relationships currently exist between all three types of partners, the collaborations generally haven't been as productive or innovative as they could have been, Grumbach says. "It's been hard for the various constituents to communicate and collaborate," he notes, "because neither UCSF nor the partners have consistent, centralized processes for setting up such relationships."

"Researchers often meet resistance from community members about participating in clinical studies," Grumbach notes. "Particularly in minority communities, the legacy of exploitative research studies such as the notorious Tuskegee Syphilis Study continues to make many people mistrustful of clinical research." By empowering community members and their clinicians in the research process, the CEP hopes to overcome these barriers and create models of clinical research that are more responsive to community needs and interests.

The CEP will transform these kind of hurdles into bridges by creating staff positions and centralized databases to match researchers with partners and participants, and by training both UCSF researchers and community partners in "participatory research" (so that both sides will become more engaged). In addition, the CEP will expand UCSF's capacity to conduct research studies using active community participatory models. At the end of each study, the CEP will disseminate study findings back to the study participants, using methods sensitive to the level of literacy in the targeted communities.

"Our goal is to support UCSF researchers across the campus as they build and maintain mutually beneficial partnerships with our colleagues in community practice and with the public," Grumbach says, "and to provide similar support to our community partners. Ultimately, our overall objective is to enhance the ability of clinical research to translate into improvements in the quality of care patients receive and reductions in health disparities."