. "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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to provide them with up-to-date information regarding best practice outcomes and cost data.
Clinton noted that "HMO [health maintenance organization] decision guidelines often deny payment for any treatment that is not approved by the FDA [Food and Drug Administration] on the grounds that the treatment is experimental, even though trial treatment may be a better and even more cost effective option for the patient." HMO coverage of clinical trial treatment may improve the accrual of minority patients.
Mechanisms for Ethnic Minority Community and Researcher Input into the Cancer Agenda
The perceptions and experiences of community representatives and grassroots leaders, as well as those of researchers interested in cancer among minority and medically underserved groups, are important in helping to provide an understanding of NCI's mechanisms for the involvement of these constituencies in research priority setting. NCI's response to minority community and researcher input is led by the recently established Director's Consumer Liaison Group (DCLG) and the Office of Special Populations Research (OSPR). At the NIH level, the effort is led by the Office of Research on Minority Health (ORMH).
Office of Research on Minority Health, NIH
As noted in Chapter 3, ORMH, established by the director of NIH in 1990, was authorized by the U.S. Congress in 1993 (P.L. 103-43). Its mission is to improve the health status of minority Americans through biomedical research and to expand the participation of minorities in all aspects of biomedical and behavioral research. Part of its responsibilities includes an ongoing consultative process with outside organizations, a process that ORMH initiated in 1991 with the establishment of a 53-member fact-finding team. More recently, Congress has mandated that an Advisory Committee on Research on Minority Health be established to advise ORMH and NIH (this Advisory Committee is described in Chapter 3). ORMH reports that of the 9 members currently impaneled on the Advisory Committee, 6 are ethnic minorities (12 members are ultimately expected to be appointed).
Prior to passage of the congressional mandate for the establishment of an ORMH advisory panel, however, ORMH's research priority-setting processes appeared to be based largely on the research agendas of collaborating NIH institutes and centers (ICs) and the views of an ad hoc review panel, as noted in Chapter 3. Although a broad framework of 13 minority health research priorities was established by the advisory fact-finding team