The Unequal Burden of Cancer An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved (1999) / Chapter Skim
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Executive Summary
Executive Summary
Pages 1-15
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Although many ethnic minority groups experience significantly lower levels of some types of cancer than the majority of the U.S. white population, other ethnic minorities experience higher cancer incidence and mortality rates.
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; . examining how well research results are communicated and ap plied to cancer prevention and treatment programs for minorities and medically underserved populations, and the adequacy of understanding of survivorship issues that uniquely affect minority and underserved communities; and, .
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The work of these other agencies lies outside of the purview of this committee, but they are critical components of the National Cancer Program and need to be incorporated into the National Cancer Plan. FINDINGS AND RECOMMENDATIONS To address the study charge, the committee reviewed extensive information provided by NIH and NCI staff, and received input from outside of NIH via a panel of community representatives and a survey of researchers interested in cancer among ethnic minority and medically underserved populations.
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Furthermore, "racial" groups as defined by OMB are not discernible on the basis of genetic information (American Anthropological Association, 1998; President's Cancer Panel, 1997~. The committee considers the term "ethnic group" as a more appro
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ethnic minority and medically underserved populations. It lacks the necessary database concerning the disproportionate cancer incidence, mortality, and survival rates among ethnic minorities and medically underserved groups that would permit NCI to develop and evaluate effective cancer control strategies for these populations.
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Estimates of expenditures on minority health research should therefore be determined by summing research expenditures associated with studies that address a priori research questions focused on the particular needs of ethnic minority and medically underserved communities. Therefore, while NCI reports that $124 million was allocated to research and training programs relevant to ethnic minority and medically underserved populations in fiscal year 1997 (based on percent relevancy accounting methods)
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The presence of such diverse viewpoints can yield great benefits for NIH, as well as for the public at large (e.g., greater public support for scientific programs, and greater attention to the needs of medically underserved populations)
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, which advocated a data-driven review of the cancer burden among ethnic minority and medically underserved populations as a means of identifying priority research areas. Two offices serve as logical focal points for the development of a strategic plan to address cancer among ethnic minority and medically underserved populations and assess progress toward that goal.
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It has no independent resources to fund a separate portfolio of initiatives for special populations research, has no clear criteria or guidance for recommending the priorities for such initiatives that are dependent on the resources of other parts of NCI, and holds no official position on any of the NCI advisory committees responsible for setting major intramural or extramural priorities. Rather, OSPR serves as the "eyes and ears" to the NCI director regarding research on ethnic minority and medically underserved populations, as it monitors program activities and provides guidance and advice.
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Relatively little attention, however, has been devoted to the specif~c needs of ethnic minority and medically underserved populations. Despite the presence of cancer information materials that have been translated into Spanish and other products targeted to ethnic minority communities, no strategic plan regarding information dissemination to these groups and their health providers appears to exist.
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This is especially true among ethnic minority and medically underserved populations, who face numerous cultural, socioeconomic, and institutional barriers to cancer prevention and treatment services. Cancer survivors in these communities are often painfully aware of the lack of services and information that might assist neighbors, friends, and relatives either to avoid or to cope with a cancer diagnosis.
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