. "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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groups. "These committees should collect and gather information on cancer-related grassroots organizations to identify their needs," Young said. "Then, submit a proposal of suggestions to NIH or NCI to better serve the different ethnic groups." Population groups such as "Asians" should not be lumped together, because Chinese, Korean, Japanese, and other groups are culturally different.
10. Community-based groups need assistance in grant writing to be competitive for NIH grants.
Lucy Young, Barbara Clinton, and others agreed that community-based organizations with innovative cancer control or research proposals should be encouraged to submit proposals but that they often lack the time, resources, or skills to do so. NIH should provide technical assistance to these groups to improve their ability to compete for grants.
11. Environmental risk factors disproportionately affect ethnic minority and medically underserved groups, and therefore should be prominent in the NIH portfolio.
"At the community level, cancer prevention is inextricably linked to environmental degradation," noted Barbara Clinton. Scientists should move "beyond the notion that personal health behavior alone explains the increased mortality in low-income populations." NCI should "investigate the relationship between environmental exposures that occur early in life and the development of adult diseases as well as transgeneration effects that occur in the child of the person who was exposed to the environmental toxin."
Clinton also recommended that NIH "support leadership exchanges between staff of the NCI and national and local environmental organizations." Finally, she noted, cancer control research should support existing community-based efforts to address environmental issues.
12. NCI should expand investigations of lay community health workers, who may be especially effective in addressing the needs of cancer survivors in minority and medically underserved communities.
Lay community health workers, according to Barbara Clinton, provide locally tailored and culturally sensitive information to patients on subjects that are confusing and sometimes taboo. "These workers help people access available resources in cost-effective ways," she noted. NCI should also expand research on health navigators, who help patients understand treatment options, providers, and other choices. Research questions should investigate how and under what conditions these providers work best.
13. NCI should provide information to managed care organizations