Building Sustainable Community-Based Participatory Research

Purpose: The purpose of the study was to develop a model of community-based participatory research as a part of a larger Center of Excellence in Health Disparities Research.  Demographic data indicated increased incidence of chronic health conditions in the community including diabetes, hypertension, obesity, and other cardiac disorders. At the start of the planning efforts for project development community members expressed distrust based on previous experiences where researchers would come into the community, determine what they wanted to do to or for the community and then intervene and leave. Community members made it clear from initial efforts that their purpose in participating was to play a key role in determining what needs the community had and finding ways to address those needs.

Methods: The interdisciplinary researcher team that developed the Center application was located in a suburban underserved community in the Midwestern United States. The PI and her team worked with a coalition of community groups to determine willingness to collaborate. After agreeing on shared goals for the research a smaller group wrote the first application. The community group provided an outline for the development of the Community Engagement Core in the application, detailing the agreed conduct of that Core. Work with the community continued in the post-submission and pre-funding period. After funding, the Community Engagement Core began its work as detailed in the project and the work plan. The Core Director, a member of the Community and a member of the grant leadership team was given the authority and budget to implement the research plan. Community Advisory Board Members monitored the research, evaluated outcomes, met with stakeholders, and modified agenda.    

Results: Successes achieved during the first grant period led to submission and funding of a subsequent five year project. The partnerships continued during the second grant period and have been sustained even after the completion of eight years of NIH funding. The community has been able to actively engage in identification of health care needs, develop projects to address those needs, and conduct comprehensive evaluations that have allowed the PI/researcher to better understand how to improve health outcomes in minority communities. The continuing partnership is developing new models of community collaborative research driven by community identified needs.

Conclusion: Building the processes for community-based participatory research requires time commitment and a willingness to change the way that researchers have traditionally conducted their research. To be successful in this venture, researchers must seek to learn from the community, take the time to build trust in the relationships and trust that the community, if you have the right people at the table, understands its needs better than outsiders do. As a researcher, the PI has gained enormous understanding and insights into health disparities and social determinants of health through the lived experience of CBPR.  The processes and outcomes achieved in this project would not have been possible without the dynamic leadership of one key community activist who has committed over 40 years to helping her community address its health needs. The PI was extremely fortunate that she and I have become kindred spirits.

* Work funded in part by NCMHD grant # 1 R24 MD00509-01 and NIMHD grant # 1 P20 MD001816-01