Appendixes



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Appendixes

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A Methodology To assist the committee in addressing its charge, the committee gathered information from several resources both within and outside of the National Institutes of Health (NIH). This appendix describes the committee's charge and briefly addresses the types of information that the committee requested and received from those resources. Committee Charge The Committee on Cancer Research Among Minorities and the Medically Underserved was charged with evaluating and critiquing the efforts of NIH's cancer research agenda for minority and medically underserved populations. The committee was charged with three specific tasks: (1) review the status of cancer research relative to minorities at the various institutes, centers, and divisions of NIH to evaluate the relative share of resources allocated to cancer in minorities (including a review of NIH's ability to prioritize its cancer research agenda for minorities and the role of minority scientists in decision making on research priorities); (2) examine how well research results are communicated and applied to cancer prevention and treatment programs for minorities and the adequacy of understanding of survivorship issues that uniquely affect minority communities; and (3) obtain an understanding of the adequacy of NIH procedures for equitable recruitment and retention of minorities in clinical trials.

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Sources of Information Provided to the Committee At the onset of the study, the committee found that it needed data that would provide an inclusive overview of the research enterprise at NIH as it pertains to minority and medically underserved populations. Data were therefore collected from the following sources: Institutes of NIH: National Cancer Institute (NCI); National Institute of Allergy and Infectious Diseases (NIAID); National Heart, Lung, and Blood Institute (NHLBI); National Institute of Environmental Health Sciences (NIEHS); National Human Genome Research Institute; and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD) Other federal and nongovernmental health agencies and organizations: the Centers for Disease Control and Prevention's (CDC's) National Cancer Registry, the North American Association of Central Cancer Registries (NAACCR), the California Cancer Registry, and the Georgia Cancer Registry. The requests were for information covering the three core areas of the committee's charge. Data The information that the committee received is described briefly. Copies of letters from the committee requesting information are listing at the end of this appendix. NIH Priority-Setting Processes To address aspects of the charge related to a review of NIH priority setting and the mechanisms for input from NIH constituencies, the committee requested and received the following information from NIH: information on priority setting at NIH (e.g., National Institute of Health, 1997) copies of testimony and reports to the U.S. Congress, and information regarding NIH and NCI advisory panels. NIH Research Programs To facilitate review of NIH research programs, the committee requested and received the following information:

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Surveillance Activities NCI and NIH definitions of ''special populations," information regarding national surveillance programs, including data from NAACCR and CDC, and information regarding the Surveillance, Epidemiology, and End Results (SEER) program and its coverage areas. Research Programs Summaries of intramural and extramural research programs at NCI, NIDDKD, NIAID, NHLBI, NIEHS, etc., related to the study of cancer among minority and medically underserved populations. Information regarding funding for research related to minority and medically underserved populations for fiscal years (fiscal years [FYs] 1985, 1989, 1993, and 1997). Program announcements and requests for applications (RFAs) relevant to cancer research among minority and medically underserved populations for FYs 1985, 1989, 1993, and 1997. Program announcements and Fas relevant to cancer research among minority and medically underserved populations for FYs 1985, 1989, 1993, and 1997. A list of research grants pertaining to cancer research among minority and medically underserved populations funded in FYs 1985, 1989, 1993, and 1997. Clinical Trials Information regarding accrual and retention of minority and medically underserved populations in NIH-sponsored cancer clinical and prevention trials. Information on strategies used by NCI and NIH to recruit and retain these populations. Training Programs Information regarding NIH and NCI training programs for minority scientists. Dissemination Information on NIH and NCI strategies to disseminate cancer research.

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Information to minority and medically underserved communities and their providers. Information on publications resulting from NIH grants for research on cancer among minorities and medically underserved populations. Survivorship Information on research grants related to cancer survivorship and supported by the NCI. Information on ongoing activities of the Office of Cancer Survivorship. Additional Information Resources Computer Retrieval of Information Scientific Projects To further assist the committee in its review of the NCI and NIH research agenda the Institute of Medicine (IOM) staff conducted a search of the Computer Retrieval of Information on Scientific Projects (CRISP) database. The CRISP database contains information on federally funded research, including grants, contracts, and cooperative agreements conducted primarily by investigators at universities, hospitals, and other research institutions. Projects listed in the CRISP database are funded by a number of US Public Health Services agencies including NIH. This database contains information on special projects, investigators, scientific concepts, and emerging trends. The CRISP database is updated weekly. The IOM staff search was conducted for projects funded in 1997 only. Specific search terms used included "NIH" or "NCI," "R01," "CA'' for cancer, and the wildcard "minority*." There is no global term in the CRISP database for "underserved" or "medically underserved." Public Meeting The committee held a public meeting on June 11–12, 1998, in Washington, D.C. The purpose of this meeting was to provide an opportunity for cancer advocacy groups and community-based health organizations to present their views on the responsiveness of NIH to their concerns and input into cancer research studies. The committee also heard testimony from invited NIH representatives. A copy of the agenda for this meeting is located in Appendix D.

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Survey IOM staff developed and distributed a survey to assess the responsiveness of NCI to minority investigator-initiated research and funding opportunities. More than 850 surveys were mailed to individuals who are members of the following groups or organizations: Appalachian Leadership Initiative on Cancer (principal cancer investigators), Hispanic Cancer Network, Intercultural Cancer Council, Society for the Advancement of Chicanos and Native Americans in Science (fields related to cancer only), NIH Minority Supplement Trainees, and American Association for Cancer Research (members of the minority section only). The results of the survey are summarized in Chapter 4. A copy of the survey is included in Appendix E.