D

Survey of Ethnic Minority Researchers and of Researchers Interested in Cancer Among Ethnic Minority and Medically Underserved Groups

The recommendations of respondents to the committee's survey and some representative comments related to each of the recommendations from respondents to the survey, as described in Chapter 4, are presented here.

1. Involve community members and community-based researchers as partners in the research process.

Adapt RFP [request for proposal] guidelines to support community-based research—don't assume the research centers and universities are competent at researching communities. Require participation and joint input with community agencies.

Support initiatives that involve minority and health care leaders [of organizations that serve these populations] in the development of cancer prevention and control research applications.

Speak with these communities, especially the young investigators.

2. Improvements should be made in training and grant programs to increase the capacity for scientific research among minority and medically underserved populations.



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D Survey of Ethnic Minority Researchers and of Researchers Interested in Cancer Among Ethnic Minority and Medically Underserved Groups The recommendations of respondents to the committee's survey and some representative comments related to each of the recommendations from respondents to the survey, as described in Chapter 4, are presented here. 1. Involve community members and community-based researchers as partners in the research process. Adapt RFP [request for proposal] guidelines to support community-based research—don't assume the research centers and universities are competent at researching communities. Require participation and joint input with community agencies. Support initiatives that involve minority and health care leaders [of organizations that serve these populations] in the development of cancer prevention and control research applications. Speak with these communities, especially the young investigators. 2. Improvements should be made in training and grant programs to increase the capacity for scientific research among minority and medically underserved populations.

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Overall these is a mismatch between training incentives and career transition initiatives. NIH should … establish a bonus program to facilitate supplementation of a minority scientist's first grant. For younger, promising minority investigators, provide five year grants and funding for salary support and technical support (salary support alone is insufficient). If productive, renew the grant for an additional five years. Have the same for mid-level (associate professor) investigators also. Regional seminars for trainees on these types of issues [research funding] held periodically would heighten awareness, interest, and understanding of availability of funding/research. Minority research career development awards, renewable for up to 10+ years. Provide more seed grants for new investigators' short-course (three to six months) research. Training opportunities for aspiring clinicians. Until minorities make up a larger percentage of those investigators applying for NIH funds … we will continue to see low numbers of research proposals focusing on minority-related issues and subsequently low receptivity to these proposals. 3. Scientists from minority and medically underserved communities should be involved in the NIH priority-setting process and in staffing of NIH positions. Recruit minorities in NIH Board of Scientific Counselors and peer review committees. Increase minority staff at NIH at all levels, particularly in policy positions. NIH staff at all levels must be part of cultural competency training. They have too [many] biases against minority investigators. Get more minorities on study sections. Include more minorities on review panels. Continue work with

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HBCUs [historically black colleges and universities] including 1890 institutions. Develop an advisory board on addressing research needs of minority and medically underserved communities. 4. Community members and community-based researchers should be partners in research priority setting. Hold focus groups with community leaders, primary care doctors, and research scientists to review current priorities with the needs of the community. Include members from target populations in committees which discuss and decide priorities. 5. Research issues for minority and underserved populations must be integrated into a national cancer research agenda. NIH must take a national approach in funding and develop cancer research in minority and medically underserved communities. This approach must be a part of NIH's national agenda and must be aimed toward the reduction of cancer in these populations. 6. Define special populations research more adequately. Much more critical assessment of the nature of 'underserved' and the extent to which minorities are underserved. Improve the definition of 'minority' and 'medically underserved' communities. Or better, eliminate the term 'minority' as pejorative, and define better the target populations. Do not make race or ethnic background an issue. These have become political issues, and these cloud public and medical judgment. Any work with American Indians needs to be regionalized to accommodate the differences among tribes. Most of the work [of NCI] has been focused on Southwestern tribes, and their characteristics are very different from [those of] East Coast, Northwest, Plains Indians, etc.

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7. Involve institutions serving minority and medically underserved communities in cancer research. Greater focus on training, translation research in minority and medically underserved communities, support of cancer centers at HBCUs. Networking of research capabilities of minority … universities/research medical centers. Use of black colleges and medical schools.

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INSTITUTE OF MEDICINE NATIONAL ACADEMY OF SCIENCES 2101 CONSTITUTION AVENUE, N.W. WASHINGTON, D.C. 20418 Committee on Cancer Research Among Minorities and the Medically Underserved Phone: (202) 334-1755 Fax: (202) 334-1385 Internet: bsmedley@nas.edu May 21, 1998 Dear Colleague: On behalf of the Institute of Medicine's Committee on Cancer Research Among Minorities and the Medically Underserved, I am writing to you to solicit your input for this critically important report. You have been identified as an individual who has expertise in issues related to the study committee's charge, which are: to review the status of cancer research relative to minorities and the medically underserved at the various institutes, centers and divisions of NIH to evaluate the relative share of resources allocated to cancer in minority and medically underserved populations (including a review of the NIH's ability to prioritize its cancer research agenda for minorities and the medically underserved and the role of minority scientists in decision making on research priorities); to examine how well research results are communicated and applied to cancer prevention and treatment programs for minorities and the medically underserved and the adequacy of understanding of survivorship issues that uniquely impact on minority and medically underserved communities; and, to assess the adequacy of NIH procedures for equitable recruitment and retention of minorities and the medically underserved in clinical trials. The committee will also be asked to make recommendations on an annual reporting mechanism on the status of cancer research among minorities and the medically underserved at the NIH. We seek your input into any and all of the areas outlined in the charge above, but more specifically, we would like to receive your opinion on specific topic areas in the attached questionnaire. We would be grateful to receive your input on or before June 10, 1998, so that the committee may review this information at its next meeting. Please mail the questionnaire to us at the mailing address listed at the bottom of the questionnaire, or fax it to us at (202) 334-1385. Please return it to the attention of Brian Smedley, Ph.D., Study Director. Please do not include identifying information on the questionnaire. Committee staff will work to

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ensure that names of respondents remain confidential (e.g., identifying information at the top of received faxes will be removed and return envelopes discarded). If you have any questions regarding this questionnaire, please contact Brian Smedley at (202) 334-1755 by phone, or by email at bsmedley@nas.edu. Thank you again for your assistance. Sincerely, M. Alfred Haynes, M.D., M.P.H. Chair

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IOM Study of Cancer Research Among Minorities and the Medically Underserved Please do not provide any identifying information other than in response to the questions below. Responses will be presented to the committee to inform the study report. What is your race/ethnicity? Please indicate the highest degree you have attained: What is the nature of your present work? ___ Primarily research (laboratory, clinical, or field-based) ___ Primarily teaching ___ Primarily clinical practice ___ Primarily health policy ___ Other (please indicate): ___ Your employer is: ___ Federal, state or local Government ___ Non-profit educational or research institution ___ Health care service ___ Other (please indicate): ___ Have you ever submitted a research proposal to NIH or its Institutes? Have you ever responded to an NIH Request for Applications or Program Announcement? Have you ever received funding from NIH or its Institutes for a research program? If so, please describe the nature of the research: Have you ever received research training funds from NIH or its Institutes? If so, please describe the nature of the funding: If you have applied for funding at NIH (other than training funds), how would you rate the experience (please circle one)? 1 2 3 4 5 6 7 very negative neutral very positive Please describe your experience: How familiar are you with the research priority-setting process at NIH? Have you ever been asked to sit on an NIH advisory body (e.g., Board of Scientific Counselors)? If so, which one? Have you ever attempted to provide input into the research priority-setting process at NIH?

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How would you rate the receptivity of NIH to research proposals focusing on the needs of ethnic minority and medically underserved populations? 1 2 3 4 5 6 7 very negative neutral very positive Comments: In general, how would you rate the value or priority that NIH places on research relevant to minority and medically underserved populations? 1 2 3 4 5 6 7 very negative neutral very positive Comments: In general, how would you rate the value or priority that NIH places on training of minority scientists? 1 2 3 4 5 6 7 very negative neutral very positive Comments: Are there examples of NIH activities, programs, or initiatives that you feel have worked well to address the research needs of minority and medically underserved communities? Do you have recommendations on how NIH might improve its approach to addressing research needs of minority and medically underserved communities? Can you provide other comments, based on your personal experience, on other areas of the study committee's charge that have not been addressed above? Please support your comments with examples. Thank you for your assistance. Please mail or fax the questionnaire to: Brian Smedley, Ph.D., Study Director, FO-3014, Institute of Medicine, 2101 Constitution Ave., N.W., Washington, D.C. 20418. Fax: (202) 334-1385