Development, implementation, and early successes of a community research infrastructure to facilitate ethical engagement of minorities
Tuesday, November 5, 2013
: 1:15 p.m. - 1:30 p.m.
Underrepresentation of minorities in research creates challenges to achieving equity in health outcomes. The legacy of unethical research involving minorities has affected their research participation. Regulations established to address such ethical breaches do not adequately address other significant barriers with profound ethical implications such as lack of trust, power differences, participant burden, limited access to healthcare and to research opportunities, and perceptions that researchers' priorities are not responsive to minority concerns. Efforts to address these issues benefit from intentional structural supports that include community advisory boards (CABs), shared financial resources, community health workers (CHWs), and community-based participatory research (CBPR) approaches. This presentation addresses formative and process data characterizing a community research infrastructure initiated in 2010 to ethically engage minorities in research as both partners and participants. A longstanding CBPR partnership adapted a successful CHW model, the Community Connector Program, to address trust and other factors affecting minority research participation in a rural, predominately African American community. Grant support is provided to the primary community partner for implementation. CHWs use an Electronic Health Registry and a Resource Directory to address needs prioritized by residents related to healthcare access and social determinants of health. A CAB comprising grassroots minorities affected by disparities informed question selection for the Registry to minimize participant burden and advise on this and other research to maximize relevance to community context. A Research Collaborative of providers and agencies identify mechanisms for improving healthcare and research access. The partnership has successfully engaged translational researchers to help sustain this infrastructure.
Diversity and culture
Public health or related research
Discuss unethical practices affecting minority participation in research
Identify components of the community research infrastructure implemented to facilitate ethical engagement of minorities in research
Keyword(s): Health Disparities, Community Research
Presenting author's disclosure statement:
Qualified on the content I am responsible for because: I am a principal investigator on the project that is described in the abstract to be presented. I am a public health professor in an accredited college of public health.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.