. "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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Barbara Clinton has worked to develop and support community-based health initiatives ranging from maternal and infant health promotion to cancer prevention and screening. She has been extensively involved in the development of models in which lay health advisers are used for health intervention purposes. Much of this work takes place in rural communities in Appalachia. Clinton noted the link between cancer and environmental carcinogens, noting that "the South is the nation's biggest hazardous waste dump," especially in low-income communities in the South. She also addressed the need for greater provision of information from NIH to managed care organization, and for research on the use of lay health advisers.
The panel highlighted several themes and recommendations, as summarized below.
1. Inclusion of minorities in clinical trial research must be a high priority at NIH.
Zora Kramer Brown provided an example of how a lack of inclusion of minority women in breast cancer screening trials led to recommendations from an NIH Consensus Panel that may be appropriate for many women but not minority women. The Panel concluded that evidence was lacking to recommend breast cancer screening among women ages 40 to 49, but Brown stated that these data ignored the fact that the greatest increase in breast cancer is among African American women under the age of 40. The Panel's recommendation was later reversed, but the initial recommendation was based on studies from Sweden, Canada, and England that did not include African-American women.
"We have not done a good job of convincing the African-American community that clinical trial research actually does benefit them," said Brown. "And in order to do that there has to be education that is coupled with it. And I do believe that education is research." Brown added that minority patients and their providers need to better understand how to gain access to clinical trials.
Brown draws a distinction between poverty, illiteracy, and cultural beliefs. Poverty and illiteracy may pose barriers to clinical trial accrual, but these are not cultural factors, she indicated. NIH needs to attend to poverty and illiteracy, but it should not ignore cultural factors that may pose barriers to accrual in clinical trials.
2. Collaboration between comprehensive medical centers and historically black medical schools should be fostered.
Most clinical research is conducted in large research hospitals that do not serve African Americans, according to Brown. African Americans do, however, frequent hospitals associated with historically black colleges and medical schools. This limits NIH's ability to access black populations and