. "4 Evaluation of Priority Setting and Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health." The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press, 1999.
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As in Recommendation 1 above, some respondents felt that the knowledge of community leaders and grassroots health advocates could be better used by NIH if these individuals were consulted in the research priority-setting process. Community members' knowledge of the health problems, resources, and needs of their communities would not only help to better inform NIH of the most pressing issues faced by minority and medically underserved communities, but such consultation and involvement in the priority-setting process would foster greater collaboration and community participation in research.
Research issues for minority and underserved populations must be integrated into a national cancer research agenda.
Some respondents questioned whether research on minority and medically underserved populations was a significant component of a national cancer plan. These respondents stressed that research among minority and medically underserved populations should not be an "afterthought" or compartmentalized within limited areas of NIH's research portfolio but should be integrated into areas of key focus.
Define special populations research more adequately.
Several respondents were critical of how "special populations" are defined at NIH, arguing that a better assessment of "underserved" groups is needed. Some argued that use of the term minority is pejorative and should be replaced in favor of terminology that more accurately describes cancer risk.
Involve institutions serving ethnic minority and medically underserved communities in cancer research.
Several respondents argued that institutes serving minority and medically underserved communities, such as HBCUs and institutions that serve the Hispanic populations, have the greatest ability to perform culturally appropriate research with minority and medically underserved populations. In addition, these institutions would have greater access to minority and medically underserved study populations and have greater opportunities to train ethnic minority scientists and researchers. Respondents urged NIH to make greater investments in these opportunities.
What are the Needs of Cancer Survivors in Ethnic Minority and Medically Underserved Communities?
To understand the needs of cancer survivors in ethnic minority and medically underserved communities, the committee received testimony from representatives of several community-based cancer prevention and