Key national resources, including the Agency for Healthcare Research and Quality (AHRQ), the Institute of Medicine, the National Cancer Institute and the Center for Disease Control and Prevention (CDC), have endorsed involving a broad base of constituencies to support participation in translational research through CTSAs. This approach optimizes the potential for improving the health of the public, especially those who are economically disadvantaged or otherwise marginalized. Research has highlighted the need to modify certain processes and interactions in order to improve both participant and clinical involvement in research. These include:
long-term involvement of researchers and research institutions in local communities;
seeing residents and community spokespersons from marginalized communities as partners in research and research decision-making;
creating horizontal rather than hierarchical communication approaches;
disseminating the results of basic and clinical/behavioral science to affected residents;
equitable cost sharing;
avoidance of last minute solicitations of support and recruitment to research; and
recognition that the differing needs and concerns of communities and researchers are subject to negotiation and dialogue.
Community partnerships with university researchers can be effective in improving research methodology, processes and results, and involvement in research in general. However, community-university relationships can be compromised by many factors, including negative or stereotyped understanding of ethnic/racially diverse and low income communities, and including inadequate dissemination and utilization of research results for the benefit of these participating communities.
UConn Health has had ongoing positive relationships with state and city agencies, but less robust associations with underserved urban areas of central Connecticut despite efforts to bridge the social/geographic gap through the Center for Public Health and Health Policy, community dental and other clinics,and the work of specific faculty with commitments to research and education in the urbanized areas of the region. As UConn Health develops groundbreaking research programs in biotechnology and tailored medicine, the headway that has been made in achieving improved university community relationships may be attenuated without careful attention to improved community-university knowledge exchange in support of translational research coupled with benefits to communities experiencing health disparities. Accordingly, a core element within CICATS is a well-designed, consistent, coherent approach to the way information about biotechnology, new drug developments, genomic innovations and other new scientific developments is exchanged with the public. Finding ways of disseminating information about new clinical trials in the area, helping underserved residents to understand how such trials might or might not benefit them, and bringing residents into the translational science dialogue are important for generating broad-based public support and avoiding perceived or actual exploitation of marginalized groups. Reaching out to diverse communities, especially those experiencing health disparities, to gauge their expectations, needs and concerns are equally important. This requires a bridging infrastructure that democratizes science (i.e., improves community access to scientific and research information) by providing translational knowledge to university, health service and community sectors and enables affected communities to participate in influencing general directions in science development.
This will be accomplished through four sub-aims:
- Increase access to current biomedical research, and results in Hartford-area communities experiencing health disparities.
- Increase understanding of and support for community-based research, clinical trials and specialized areas including genomic medicine within underserved, vulnerable or affected communities and among primary care providers.
- Improve academic understanding of the community/bio-medical/clinical trial interface.
- Bring innovations in translational science to the general public through a program of museum and gallery expositions in the central Connecticut region, entitled, “The Science of Art and the Art of Science.”
|Makoul, Gregory, Ph.D.|
|Ruańo, Gualberto, M.D.||
Email | Website
|Schensul, Jean, Ph.D.|
|Weeks, Margaret, Ph.D.|