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[ Recorded presentation ] Recorded presentation

Strategies for Community Involvement in Research to Reduce Health Disparities in Rheumatic Diseases: Perspectives from Community Partners

Kelli L. Carrington, MA, Janet S. Austin, PhD, Nicole Schuett, Robert Miranda-Acevedo, Reva C Lawrence, MPH, and Barbara B. Mittleman, MD. U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Arthritis and Musculoskeletal and Skin Diseases, 31 Center Drive, Bldg. 31, Room 4C02, Bethesda, MD 20892, (301) 496-8190, carringk@mail.nih.gov

Community-based participatory research (CBPR) requires researchers to involve target communities in the research process, from developing program goals to promoting and participating in research studies to evaluating program effectiveness.

These programs require staff dedicated to learning about and responding to the target community's needs and concerns about research. Through the Health Partnership Program, coordinated by the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health, we benefit from community involvement in a research program designed to increase scientific understanding of health disparities in rheumatic diseases among minority populations.

Since the program's inception in February 2000, we have established a community health center in a multicultural neighborhood in Washington, DC, recruited more than 750 patients into a natural history study of rheumatic diseases, implemented a study of health beliefs and health behaviors among people with arthritis, and participated in more than 100 exhibits and presentations on arthritis and clinical studies. These accomplishments are the result of our work with 76 community partners, many who have been involved since the beginning of the program.

Sustaining partnerships is vital to CBPR, and while we've created some long-term relationships, we continue to learn more effective ways to advance and maintain the community's involvement. We will present qualitative and quantitative data from our 2004 Partnership Satisfaction Survey that will answer questions such as, what do community organizations expect from a community research program, what keeps them involved, and what are the best ways to communicate research news to community partners?

Learning Objectives: At the end of this session, participants will be able to