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The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved (1999)
Institute of Medicine (IOM)

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. "7 Monitoring and Reporting." 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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specific statements about strategies, targeted programs, participation by ethnic minority and medically underserved populations in the process, and communication between these communities and NCI. Although the Senate report refers to NIH, most suggestions have been directed toward NCI as the principal focus for cancer research. At the same time, it is clear that progress against cancer is not totally dependent on NCI and the research that it funds.

Recommendation 7-1: The committee recommends a regular reporting mechanism to increase NIH accountability to the U.S. Congress and public constituencies. Such reports should

  • report on data on progress against cancer using the nomenclature ''ethnic groups" rather than "racial" groups and include data on medically underserved populations with ethnic group data;
  • provide data on the incidence of cancer at several cancer sites, including those cancers that disproportionately affect ethnic minority and medically underserved populations;
  • consider as one alternative reporting of mortality data in terms of "potential reduction of deaths," a statistic that is based on the lowest mortality rate among U.S. ethnic groups and that emphasizes the need for cross-cultural studies to ascertain optimal strategies for cancer prevention, treatment, and control;
  • link research findings to reductions in cancer incidence and mortality and identify any gaps that may occur in this linkage; and
  • report on "process" developments, such as the number and type of research programs specifically targeted to ethnic minority and medically underserved groups and the contributions of ethnic minority scientists and community groups to the research priority-setting process.
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