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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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fiscal year 1997 (P.L 104–208), the Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education focused on cancer in ethnic minority and medically underserved populations. The legislation stated that "cancer crosses all groups in America, but often takes its deadliest toll among minorities and the medically underserved." As examples, it quoted a higher rates of cervical cancer among Hispanic women and prostate cancer among African-American men, and lower rates of survival from lung cancer among Native Americans. The latter Senate committee expressed similar concern about cancer among ethnic minority and medically underserved populations that the prior Senate Committee on Appropriations had expressed about cancer among older members of the general population. It recognized that NIH support for research, training, recruitment, and information dissemination regarding minority health issues had improved; but it was concerned that this segment of the population continued to experience disproportionately higher risks for cancer. The Senate committee believed that "the gravity of this issue demands that every appropriate effort be taken to ensure that the programs and the activities of the Nation's chief medical research institution produce long-term gains against cancer that will benefit all Americans."

Both Senate committees sought a better mechanism for monitoring and reporting of results that will affirm a commitment to equity. For this reason the Institute of Medicine Committee on Cancer Research Among Minorities and the Medically Underserved reviewed the response to the previous Senate Committee on Appropriations request for information on cancer among older Americans, with the hope that the mechanisms suggested for reporting on ethnic minority and medically underserved populations would be consistent with the mechanism for reporting on the rest of the population. In accordance with the Senate request for information on older Americans, the Extramural Committee, chaired by Lester Breslow, was formed to assess measures of progress against cancer (Extramural Committee to Assess Measures of Progress Against Cancer, 1990). That committee approached the problem of reporting from the perspective of linking the population with the problem of cancer and linking the processes of cancer intervention with measurable results. Similarly, this chapter first discusses the reporting of results and then discusses the reporting of certain processes in cancer research that relate specifically to ethnic minority and medically underserved populations. The committee distinguishes between monitoring and reporting, the former being a continuous activity, and the latter serving an intermittent activity.

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