Rural community-academic partnership model for community engagement and partnered research
Mutual trust and respect contributed to a sustainable rural partnership and increased willingness to participate in clinical trials.
Why this item may be useful
An academic-community partnership, designed to ensure participation of traditionally underrepresented communities, was successfully sustained for over 13 years. Community providers completed human subjects protections training as a condition for sharing in government grant funding. The training helped to develop the research literacy and skills among the community partners and assisted in removal of the mystery and stigma that communities often associate with research and researchers. One product of the partnership was a jointly developed clinical trials '101' educational program for the public and healthcare professionals. The partnership produced bi-directional benefits as the academic staff were trained in community engagement, communicaiton of research results to the public and cultural competecy.
Numerous studies were undertaken by the partnership including surveys of attitudes and barriers to clinical trial participation, access to trials, biobanking issues, and patient navigation performed by community health workers for cancer screening. The partnership conducted formative research in the rural communities on the topic of biospecimen donation. Findings indicated that informed consent preferences and privacy concerns were significant factors related to distrust of researchers who do research with biospecimens, especially when the specimens are stored for future use in genetics studies.
- The partnership was initiated in 1997 between the Eastern Shore Area Health Education Center (ESAHEC) and the University of Maryland Shool of Medicine's Office of Policy and Planning.
- The ESAHEC is a nonprofit organization supported by federal and state funds and it interacts with educational, industry, healthcare, social service, faith-based, and other organizations in the region. The program provides extensive grass roots connections in the rural and underserved community.