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Engaging Minority Stakeholders to Increase Power and Empowerment

Posted by williamtlhu on 03 Jan 2016 at 17:09 GMT

Oh and colleagues presented a sobering but not surprising review of the progress made in minority participation in health research. A few critical issues remain to be addressed, including study design (recruiting minorities to be representative of the general population, or recruiting 1:1 matched whites vs non-white cohorts to achieve adequate power to target minority health), recruitment (traditional all comers approach which favors non-minorities vs. targeted community-based recruitment), setting research priorities ("me too" science vs. hypothesis-driven question derived from minority observational studies), and predatory research practices. There is a certain degree of institutional naivety within academia to assume that laissez-faire minority participation in medical research (as participants, scientists, leaders, and stewards) will lead to active minority involvement. At Emory University, my colleague Dr. Monica Parker has spearheaded efforts in engaging the African American community in on-going conversations about research in aging and dementia, and it is through this iterative process that we are able to recruit African American participants to a comparative study on biomarkers of aging which involves cerebrospinal fluid collection. At the same time, the type of herculean effort needed to achieve this by the likes of Dr. Parker is often not perceived as scholarly work in the eyes of institutional leadership and journal editors, leading to the chronic problem identified by Oh and colleagues of inadequate minority participation as scientists and volunteers. In the current environment, a model for success requires a team approach involving a more traditional, possibly non-minority, research scientist, PLUS a minority physician/scientist advocate with greater psychosocial understanding of minority health than traditional barometers of academic success as "bold italic" partners "bold italic". Only involving minority research staff or a minority face of research underestimates the sophistication of minority research participants, and we call for the NIH to support/demand such a model for future funding of minority health studies.

Competing interests declared: Dr. Hu is the PI on two NIA-funded studies on biomarkers of Alzheimer's disease and endothelial dysfunction in African Americans and Caucasians.