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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4 Evaluation of Priority Setting and Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health
4 Evaluation of Priority Setting and Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health
Pages 154-186
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From page 154... ...
To understand the context for NIH's priority-setting processes and mechanisms for receiving input, it is necessary to understand how these processes are perceived by the scientific and lay communities. The first section of this chapter summarizes data that the committee collected with regard to these perceptions, including data from a survey of researchers interested in cancer among minority and medically underserved populations and a panel of individuals representing the perspectives of members of cancer survivor groups in ethnic minority and medically underserved communities.
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From page 155... ...
These include individuals who either have some familiarity with the NIH portfolio of research on cancer among ethnic minority and medically underserved populations or may have benefited from NIH training programs designed to increase the level of representation of minority investigators in the field of cancer research. It must be noted that the committee did not seek to identify a representative sample of the populations described above.
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From page 156... ...
. Respondents were asked to rate and provide their perception of the receptivity of NIH to research proposals focusing on the health needs of minority and medically underserved populations, of the value that NIH places on research relevant to these groups, and of the value that NIH
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From page 157... ...
For these survey respondents, however, the absence of such programs was viewed as detrimental to the development of ethnic minority cancer researchers, as noted in the comments of one respondent: "NIH seeks to train minority scientists yet fails to ensure adequate support once scientists reach a faculty position. A transition period of three years could make a big difference." Peer Review cant Priority Setting With regard to the experiences of investigators applying for NIH research funds, many comments appeared to be critical of the process generally, irrespective of whether the proposal was specific to minority and medically underserved populations.
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From page 158... ...
However, few at the top understand the need to fund research adequately or address the resource issues that (minority) researchers face in conducting cancer research in minority and medically underserved communities." "Good in general.
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From page 159... ...
is rationalized through issues of 'no earmarks' or spoor] quality of proposals submitted." A minority of respondents, however, were more positive about NIH's receptivity to special populations research: "I think it is improving thanks to a center tsic]
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From page 160... ...
Many other respondents stated that the quantity and quality of cancer research among minority and medically underserved populations would increase as the number of scientists from these groups increased, suggesting that training programs are viewed as a critical link to improving research. Other respondents pointed to NCI's Leadership Initiatives the National Black Leadership Initiative on Cancer, the National Hispanic Leadership Initiative on Cancer, and the Appalachian Leadership Initiative on Cancer as very effective in addressing the cancer control and research needs of these populations.
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From page 161... ...
Several respondents pointed to a lack of cultural sensitivity and awareness of the needs of ethnic minority and medically underserved communities on the part of NIH scientific review groups and staff as a key impediment to increasing the number of programs targeted to these populations and funding research targeted to these populations.
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From page 162... ...
Several respondents argued that institutes serving minority and medically underserved communities, such as HBCUs and institutions that serve the Hispanic populations, have the greatest ability to perform culturally appropriate research with minority and medically underserved populations. In addition, these institutions would have greater access to minority and medically underserved study populations and have greater opportunities to train ethnic minority scientists and researchers.
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From page 163... ...
Much of her work involves mobilization and linkage of community resources to address health needs, including the promotion of lay health advisers, the provision of technical assistance to communities, and other efforts to assist low-income and medically underserved populations. Two other individuals with expertise in the survivorship needs of ethnic minority and medically underserved communities, James Williams (executive director of US-TOO, International, an organization focused on the needs of prostate cancer survivors)
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From page 164... ...
tF] ederal agencies, generally, have been particularly supportive in helping to communicate research data to minority communities, in supporting education and early detection in underserved populations, and in addressing to some extent other overall survival needs of cancer victims." She added, however, that NIH must improve its record with regard to the accrual of minority populations in clinical trials, in establishing collaborations between comprehensive cancer centers and historically black medical schools, and in increasing the participation of minorities in cancer review panels (see below)
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From page 165... ...
Zora Kramer Brown provided an example of how a lack of inclusion of minority women in breast cancer screening trials led to recommendations from an NIH Consensus Panel that may be appropriate for many women but not minority women. The Panel concluded that evidence was lacking to recommend breast cancer screening among women ages 40 to 49, but Brown stated that these data ignored the fact that the greatest increase in breast cancer is among African American women under the age of 40.
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From page 166... ...
4. The portfolio of "special populations" research at NIH must adequately address the range of possible etiologic factors for cancer among racial and ethnic groups.
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Venus Gines noted that cancer prevention and control messages must be tailored to ethnic minority communities, a task that is often more complicated than it appears. "We should try to stay away from just straight translating from English to Spanish.
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From page 168... ...
12. NCI should expand investigations of lay community health workers, who may be especially effective in addressing the needs of cancer survivors in minority and medically underserved communities.
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From page 169... ...
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)
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From page 170... ...
Office of Special Populations Research, NCI OSPR grew out of a report of an NCI Special Action Committee, an internal group of program, planning, and management staff from all NCI divisions formed to ensure that the cancer research needs of special populations were being adequately addressed (National Cancer Institute, 1996a)
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From page 171... ...
. One of the express purposes of DCLG was "to help NCI widen the pool of qualified consumer advocates who can be called upon to serve on NCI advisory committees and other groups" (emphasis added; National Cancer Institute, 1998f)
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From page 172... ...
It therefore appears that significant representation on advisory panels by members of ethnic minorities takes place primarily when NCI embraces a conscious plan for diversity: witness the original intent of the Planning Group for DCLG to have one third of its 15 members be ethnic minorities and the final makeup of the group, which includes representatives from five different minority groups. Concern regarding ethnic minority representation on NCI advisory panels was also salient in the input to the committee from ethnic minority researchers in the field of cancer research, as well as from minority and nonminority investigators interested in cancer among minority and medically underserved populations.
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From page 173... ...
NCI should develop an evaluation plan to assess the effect of increased and more diversified ethnic minority community and researcher input on changes in NCI policies and priorities toward ethnic minority cancer issues. Such increased and more widely based minority community and researcher input is not the desired end result but is one of many means of marshaling the considerable resources of NCI in reducing the burden of cancer among minorities and medically underserved individuals in terms of fewer deaths, fewer new cases, increased lengths of survival, and increased quality of life among cancer survivors.
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From page 174... ...
Recommendation 4-3: For NCI to address Me needs of ethnically diverse and medically undersexed populations effectively, We Office of Special Populations Research (or some over designated entity or entities) must possess Me authority to coordinate and leverage programs and resources across Me divisions and branches of NCI to stimulate research on ethnic minority and medically undersexed populations.
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From page 175... ...
The ultimate aim of NCI, according to a 1998 NCI report, Priority Setting at the National Cancer Institute (National Cancer Institute, 1998g) is "to prevent or cure cancer." Given the quite general language of the NIH and NCI mandates, a wide array of policy options and research priorities is compatible with fulfillment of their missions.
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From page 176... ...
For example, if knowledge about the etiology of cancer among lowincome populations with greater than average exposures to suspected environmental contributors to an increased cancer incidence or increased mortality from cancer is known but studies are unlikely to be conducted within the private sector, then there is at least an initial rationale for giving research of this type the same careful consideration in the priority-setting process as other research that lacks commercial incentives. Indeed, not only may such research lack commercial incentives but there may also be commercial disincentives such that without sufficient commitment by public agencies, many scientific opportunities to learn about the fundamental causes and etiology of cancer may be missed.
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From page 177... ...
. Rationale for Focus on Subpopulations A proponent of crosscutting research as the sole means of addressing the needs of special populations might reject the use of targeted or special population-based approaches on the basis of the assumption that all issues of fairness and comprehensiveness of research policy can be accommodated by a combination of research strategies that are expected to yield information about causes and treatment of cancer within the general population and compliance with existing mandates for inclusion of members of those populations within ongoing clinical studies.
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From page 178... ...
In instances in which the differential health burdens are considerable, such options should be given the highest level of consideration within the NCI prioritysetting process. One important difference between the rationale for targeted research among women and the rationale for targeted research among groups def~ned as special populations in this report should be emphasized.
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From page 179... ...
This rationale rejects the adequacy of approaches that merely seek to address the needs of those subpopulations in the routine portfolio of research initiatives in favor of supplementary strategies that focus directly on subpopulations. This section considers further whether the criteria and procedures used for priority setting are generally compatible with and sufficient for priority setting for the study of cancer among special populations.
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From page 180... ...
. Moreover, a recent IOM report on research priority setting at NIH cautions against using cost data as a proxy for ranking funding decisions (Institute of Medicine, 1998)
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From page 181... ...
In addition, Klausner's testimony in hearings conducted by the present IOM committee further reflect a general preference for addressing the health needs of special populations through crosscutting research designed to lead to discoveries benefiting everyone. The value of the crosscutting approach is additionally supported by the claim of unpredictability in the growth of scientific knowledge.
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From page 182... ...
Such principles of focused, targeted research are mainstream operational assumptions guiding much of current genetic research, in which it is hypothesized that understanding of causal mechanisms in smaller populations at greater than average risk will lead to improved understanding of similar conditions in others who are not the direct focus of inquiry. In short, if uncertainty is a persistent feature of the growth of scientific knowledge, then it would be unreasonable to sacrifice all targeted research for the sake of deliberate crosscutting research, and the serendipitous character of science ensures that pursuit of the most promising leads from the current baseline of knowledge in heavily studied areas can be expected to produce unanticipated gaps no less than unanticipated gains in knowledge.
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From page 183... ...
Accordingly, various strategies designed to direct, motivate, and focus researcher imagination may be necessary as a supplement to the investigator-initiated approach if gaps in scientific knowledge contributing to differential health burdens are to be taken seriously. Although NCI has provided the committee with many additional documents outlining its past and ongoing initiatives for special populations and its plans for the expansion of its Division of Cancer Control and Population Sciences, some unanswered questions remain.
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From page 184... ...
Among its useful recommendations were proposals to improve the input of staff and other persons knowledgeable about the needs of special populations, an acknowledgment of the importance of better incidence and mortality data among these groups, and the need for support for a data driven research agenda taking into account the top five cancers affecting each minority population (National Cancer Institute, 1996a)
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From page 185... ...
SUMMARY The committee finds that the research priority-setting process at NCI and NIH fails to serve the needs of minority and medically underserved populations. Although the processes for receiving input from interested scientists (e.g., ethnic minority scientists and those interested in research among ethnic minority and medically underserved populations)
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From page 186... ...
Recommendation 4-2: The research needs of ethnic minority and medically undersexed groups should be identified on the basis of the burden of cancer in these populations, with an assessment of the most appropriate areas of research (i.e., behavioral and social sciences, biology, epidemiology and genetics, prevention and control, treatment, etc.~. Recommendation 4-3: For NCI to address needs of ethnically diverse and medically underserved populations effectively, the Office of Special Populations Research (or some other designated entity or entities)
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