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Institute of Medicine (US) Committee on Cancer Research Among Minorities and the Medically Underserved; Haynes MA, Smedley BD, editors. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington (DC): National Academies Press (US); 1999.

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The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved.

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Executive Summary

Cancer is second only to cardiovascular disease as the leading cause of death among Americans. One in four deaths in the United States is attributable to cancer, and one in three Americans will eventually develop some form of cancer. Furthermore, it is expected to be the leading cause of death in the United States in the next century (National Cancer Institute, 1998a). With the expansion of federal research efforts, however, the scientific understanding of cancer control, prevention, detection, and treatment has improved significantly, leading recently to the first overall decline in the cancer mortality rate in the United States in decades (Wingo et al., 1998).

Despite scientific gains, not all segments of the U.S. population have benefited to the fullest extent from advances in the understanding of cancer. 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. African-American males, for example, develop cancer 15 percent more frequently than white males (Miller et al., 1996). The rate of breast cancer among African-American women is not as high as that among white women, but the former group are more likely to die from the disease once it is detected (Bacquet and Ringen, 1986). Similarly, some specific forms of cancer affect other ethnic minority communities at rates up to several times higher than national averages (e.g., stomach and liver cancers among Asian-American populations, colon and rectal cancer among Alaska Natives, and cervical cancer among Hispanic and Vietnamese-American women [Miller et al., 1996]). Many ethnic minorities also experience poorer cancer survival rates than whites. American Indians, for example, experience the lowest cancer survival rates of any U.S. ethnic group (Gilliland et al., 1998).

In addition, individuals of all ethnic backgrounds who are poor, lack health insurance, or otherwise have inadequate access to high-quality cancer care typically experience high cancer incidence and mortality rates and low rates of survival from cancer (American Cancer Society, 1990). Many low-income white populations have cancer diagnosis rates as high as or higher than those for ethnic minority groups most affected by the disease. In Appalachian Kentucky, for example, a region characterized by high rates of poverty, the incidence of lung cancer among white males was 127 per 100,000 in 1992, a rate higher than that for any ethnic minority group in the United States during the same period (Gilbert Friedell, Director of the Kentucky Cancer Registry, personal communication, August 8, 1998).

These disparities in the burden of cancer prompted the U.S. Congress in 1997 (P.L. 104–208) to request a review of the programs of research at the National Institutes of Health (NIH) relevant to ethnic minority and medically underserved populations. An Institute of Medicine (IOM) committee was impaneled in 1998 and was charged with the following:

  • reviewing the status of cancer research relative to minorities and medically underserved populations 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 medically underserved groups and the role of minority scientists in decision making on research priorities);
  • examining how well research results are communicated and applied 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,
  • examining the adequacy of NIH procedures for equitable recruitment and retention of minorities in clinical trials.

The committee was also asked to make recommendations on an annual reporting mechanism on the status of cancer research at NIH among minority and medically underserved populations.

NIH, as the nation's leading federal agency supporting research to improve the nation's health, and the National Cancer Institute (NCI), as the principal unit of NIH charged with conducting cancer research and information dissemination services, served as the focal points of the committee's inquiry, along with other institutes and centers (ICs) of NIH that collaborate with NCI on cancer-related research. Although NCI holds the lead role in the development and implementation of the National Cancer Program, other federal agencies, such as the Centers for Disease Control and Prevention (CDC), the U.S. Department of Veterans Affairs (VA), the U.S. Department of Defense, and others perform related cancer prevention, control, and information collection and dissemination services, and therefore share responsibility with NIH for making improvements in the nation's health. 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. The committee's recommendations are listed in Box 1.

Box Icon


Committee Recommendations. Recommendation 2-1: NIH should develop and implement across all institutes a uniform definition of "special populations" with cancer. This definition should be flexible but should be based on disproportionate (more...)

Determining the Burden of Disease: Cancer Surveillance and Risk Factor Research

The development of sound cancer prevention and control strategies begins with an all-encompassing cancer surveillance effort. Differences in rates of cancer among various population groups detected by cancer surveillance efforts can lend clues to etiologic factors (e.g., environmental exposures, genetic susceptibility, and dietary patterns) and can therefore point to intervention and prevention strategies. In addition, disparities in cancer survival rates can lend clues to inequities in health care service accessibility and delivery, or cultural factors affecting individuals' attitudes toward the health care system. Studies of differences in the cancer experiences of various groups also have the potential to benefit the entire U.S. population, as policies and practices associated with groups that are at lower risk for cancer may be applied to those populations at greater risk.

NCI's data collection and surveillance efforts are shaped by Directive No. 15 of the U.S. Office of Management and Budget (OMB), which stipulates that the U.S. population be classified according to one of four basic ''racial" categories (American Indian or Alaska Native, Asian or Pacific Islander, black or African American, or white) and one of two ethnic groups (Hispanic or non-Hispanic). Although these classifications carry important historical, social, and political significance in the United States, they are of limited utility for purposes of health research because the concept of race rests upon unfounded assumptions that there are fundamental biological and behavioral differences among racial groups (American Anthropological Association, 1998; Cooper, 1984; President's Cancer Panel, 1997; Williams et al., 1994). In reality, human biodiversity cannot be adequately summarized according to the broad, presumably discrete categories assumed by a racial taxonomy. 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 appropriate descriptor for human population groups, as it appropriately places emphasis on the range of cultural and behavioral factors, beliefs, lifestyle patterns, diet, environmental living conditions, and other factors that may affect cancer risk.

NCI's Surveillance, Epidemiology, and End Results (SEER) program was established to provide data on the incidence of cancer in selected geographic areas that may be generalized to the total U.S. population. At this time, the SEER program provides high-quality data that are the best approximation of a national cancer database. The SEER program, however, does not fully describe the burden of cancer for many U.S. 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. These groups include lower-income or poverty-level whites, particularly those living in rural areas such as Appalachia; African Americans living in rural communities, particularly in the South; culturally diverse American-Indian populations; and Hispanics of national origins not currently included.

In addition, the SEER program, as with other NCI programs, fails to consistently collect and report on data for medically underserved populations. These groups, as noted above, suffer from cancer incidence and mortality rates that are disproportionately high and from low cancer survival rates. Medically underserved populations may be defined as low-income individuals, those without medical insurance, those who lack access to quality cancer care, or by other definitions. The committee, however, found no consistent definition of this population in the SEER program or in other NCI programs. A clear, consistent definition of what constitutes the medically underserved population is needed, and cancer surveillance reports should regularly include data on cancer incidence, mortality, and survival rates among the people who make up this population.

NIH Portfolio of Research Relevant to the Study of Cancer Among Ethnic Minority and Medically Underserved Populations

The committee finds that NIH, and particularly NCI, has funded an impressive array of research projects and training initiatives that may have a demonstrable impact in addressing the burden of cancer among ethnic minority and medically underserved populations. The committee concludes, however, that no blueprint or strategic plan to direct or coordinate this research activity appears to exist. As a result, model programs in one or more institutes are not replicated by other ICs where indicated, some areas of research emphasis receive greater attention than others, and overall funding to address the needs of ethnic minority and medically underserved populations is inadequate.

In addition, the committee believes that NCI and NIH should improve the accuracy of their assessment of the amount of resources allocated to addressing the needs of ethnic minority and medically underserved groups. NIH calculates the amount of money allocated to research on minority health programs on the basis of the percentage of ethnic minority individuals in NIH study populations. While the committee wishes to encourage NIH to continue to support the inclusion of diverse study populations in all the research it sponsors, such "percent relevancy" accounting methods are inappropriate as means of indicating overall expenditures for research on ethnic minority health. Diverse study populations do not, in and of themselves, address the research needs of ethnic minority and medically underserved populations unless meaningful research questions relevant to these groups can be posed a priori and answered based on the appropriateness (i.e., diversity and generality) of the study population. 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), the committee believes that the actual figure allocated for these groups is only slightly more than $24 million, or approximately 1 percent of the total NCI budget. Funds allocated to cancer-related minority health research and training programs by other NIH ICs are also small relative to their respective overall budgets. The committee finds these resources are insufficient relative to the burden of disease among ethnic minority and medically underserved communities, the changing U.S. demographics, and the scientific opportunities inherent in the study of diverse populations. Moreover, the committee found no evidence that NIH calculates total expenditures for research on medically underserved groups, apart from calculations derived from data for ethnic minority populations.

Although the committee found evidence that NCI sponsors significant behavioral and social science research aimed at examining the range of behavioral, psychosocial, dietary, and other factors that enhance or decrease the risk for cancer or poor cancer survival among ethnic minority and medically undeserved groups, behavioral and social science research should be expanded, particularly with respect to prevention and outreach efforts. The agenda for such research should be based on an analysis of the prevalence of particular cancers in these populations and their preventability. Particularly for ethnic minority populations, research is needed to investigate ethnically appropriate interventions, including culturally competent and linguistically appropriate approaches.

Finally, while the committee found evidence of a significant portfolio of training programs designed to increase the numbers of ethnic minority investigators in cancer-related research fields, there is little evidence that NCI or NIH has undertaken a thorough assessment of training programs to determine whether these programs are producing adequate numbers of ethnic minority researchers in all appropriate cancer research fields (e.g., behavioral and social sciences, epidemiology, genetics, and cell biology), and to determine whether training programs have resulted in the increased representation of ethnic minorities in cancer research fields. Further, there is little evidence that guidelines or other training criteria have been established by NCI or NIH to ensure that all trainees receive high-quality instruction and mentoring. Such efforts would improve the planning and implementation of future training programs.

Research Priority Setting

Establishing priorities among areas of research and scientific inquiry is a complex process that has been addressed in greater detail in a prior IOM study authored by the Committee on the NIH Research Priority-Setting Process (Institute of Medicine, 1998). In general, the present committee supports the recommendations of that previous committee. In particular, the committee supports the recommendations that diversity and public representation on NIH's advisory panels should be increased. The presence of such diverse viewpoints can yield greater 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).

The establishment of the NCI Director's Consumer Liaison Group represents an important step toward this goal, for which NCI should be commended. The committee finds, however, that there has been inconsistent progress in increasing the numbers of scientists, consumers, and community members from and representing ethnic minority and medically underserved communities on NCI advisory panels and committees. Such representation is a critical component of larger efforts to increase constituency input in priority setting and public accountability at NCI. Inclusion of members and representatives of ethnic minority and medically underserved groups on decision-making panels, however, is not sufficient in and of itself to ensure that the concerns of these groups are addressed within NCI. The impact of ethnic minority and medically underserved groups on the advisory and priority-setting process should be evaluated to ensure that policy changes follow from increased representation.

As noted above, many factors influence the setting of research priorities at NIH. Priority setting for research on ethnic minority and medically underserved populations, however, is complicated by differences in philosophy regarding how best to address the needs of these groups. NCI's leadership, for example, appears to take the position that research on "special" populations, like other areas of scientific inquiry, cannot be directed or planned and that issues for these groups may be addressed within the larger portfolio of population research (Richard Klausner, director of the National Cancer Institute, presentation to the study committee, June 12, 1998). There is significant evidence to support the position that research often proceeds because of the opportunities presented, and that in many instances, scientific opportunities have resulted in breakthroughs that offer tremendous benefits for ethnic minority and medically underserved communities, as well as for the nation as a whole. For example, the discovery of the role of the hepatitis B virus in the etiology of primary liver cancer, which disproportionately affects Southeast Asian populations, was linked with the development of a vaccine for the prevention of hepatitis B virus infection.

The committee finds, however, that the research priority-setting process at NCI and NIH fails to serve the needs of ethnic minority and medically underserved groups. Assessment of the burden of cancer among ethnic minority and medically underserved populations and consideration of these factors within the larger framework of scientific opportunity should be key aspects of the research priority-setting process. This conclusion is also supported in a recommendation made by the NCI Special Action Committee in its 1996 report (National Cancer Institute, 1996a), 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. One, the NIH Office of Research on Minority Health (ORMH), serves to coordinate research across NIH institutes on broad ethnic minority health research topics. One of the office's major functions is to stimulate research on minority populations at relevant NIH ICs by providing research supplements to leverage IC resources. ORMH has only recently, however, created a standing advisory panel to help guide the establishment of research priorities (this function had previously been assumed by an ad hoc panel), and it does not participate in the Research Enhancement Awards Program with other specialty offices at NIH to coordinate funding proposals and priorities. Its criteria for program funding and research priorities have therefore been less open to public scrutiny. In addition, ORMH program funding appears to have supplanted rather than leveraged NCI resources for important research and program activities in many instances.

Much of the authority within NCI for establishing research priorities among ethnic minority and medically underserved populations would logically fall to the NCI Office of Special Populations Research (OSPR). Currently, however, OSPR lacks the institutional advantages that would ensure that an NCI commitment to research among special populations has a chance to be successful. 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. For the reasons stated above, the committee finds that this model is insufficient to address the needs of ethnic minority and medically underserved populations. These conditions must be rectified or other lines of authority must be established for NCI to benefit from a coordinated program of research on cancer among ethnic minority and medically underserved populations.

Finally, the committee is doubtful that the incentives present in the scientific research marketplace will encourage efforts to address critical research questions among the most heavily burdened populations. To increase and improve the quality of research on cancer among ethnic minority and medically underserved populations, NCI must expand requests for applications and other funding mechanisms, especially in areas where critical gaps exist.

Clinical Trials and Cancer Information Dissemination

The inclusion of ethnic minority and medically underserved individuals in clinical trials and the dissemination of information to their communities and health care providers are critical links connecting scientific innovation with improvements in health and health care delivery. Enhancement of these links is clearly within the purview of NCI and NIH. Although many factors pose challenges to such improvements (e.g., mistrust of the scientific establishment among many members of ethnic minority communities), without a concerted effort to enhance this process, ethnic minority and medically underserved communities will continue to lag behind the American majority in benefiting from the tremendous recent scientific advancements and medical breakthroughs in cancer prevention, treatment, and control.

The committee finds that overall, the level of accrual of ethnic minorities in NCI-sponsored treatment trials is proportionate to the disease burden among these populations, with a few exceptions for specific cancer sites. NCI-sponsored prevention trials, however, suffer from poor accrual of ethnic minorities. The recently concluded trials of the chemopreventive agent tamoxifen, for example, demonstrated that the drug successfully prevented breast cancers in thousands of women at high risk for the disease. Only 2 percent of the overall study sample, however, were African American, and even smaller percentages of individuals from other ethnic groups were entered into this study. Such poor accrual raises significant questions regarding the generality of these findings to the total U.S. population.

Many factors may affect researchers' ability to recruit ethnic minority and medically underserved populations into prevention trials. One of the most significant challenges lies in the lack of funding for associated follow-up costs. In cancer screening trials, for example, NIH in most instances does not provide funding to cover costs of care for indigent populations with positive test results (Peter Greenwald, acting director, Division of Cancer Prevention, National Cancer Institute, presentation to the study committee, June 12, 1998). The committee considers the federal government's failure to provide follow-up care to needy, uninsured patients to be unethical and urges greater coordination among federal agencies to address the problem.

Another factor that may limit the participation of ethnic minority and medically underserved populations in clinical trial research is the complexity of the informed-consent process. Informed consent is the first step in establishing a bond of trust between researchers and research subjects; yet too often informed-consent forms are long, technical, difficult to administer, and not well understood by patients. The committee urges NIH to work with other agencies to explore alternative means of obtaining patient consent (e.g., oral consent) that respect patient autonomy and that do not compromise the informed-consent process.

NCI has developed several sophisticated mechanisms for the dissemination of information to cancer patients, clinicians, and others. Much of this effort has been guided by consumer research and an effective marketing plan. Relatively little attention, however, has been devoted to the specific 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. Furthermore, the committee did not find evidence of any evaluations of the effectiveness of dissemination practices in ethnic minority and medically underserved communities. Such efforts are necessary to ensure that individuals in these communities, who may be more likely to hold fatalistic attitudes toward cancer and inaccurate beliefs regarding its preventability, are being adequately served.

Cancer Survivorship in Ethnic Minority and Medically Underserved Communities

Cancer survivors are, in the committee's view, perhaps the most underutilized resource in the War on Cancer. 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. Perhaps more important, however, they possess critical expertise on how to reach members of their communities with cancer education and services information. This expertise should be tapped to its fullest.

NCI, to its credit, has established an impressive infrastructure of research programs and resources to assist cancer survivors. Greater attention must be paid, however, to the unique needs of ethnic minority and medically underserved communities. As indicated above, the committee did not find evidence of a strategic plan that addresses the needs of these communities and has offered a number of specific recommendations for the establishment of such a plan.

Monitoring and Measuring Results

To assess progress toward reducing the disparities in the cancer burden among U.S. ethnic and socioeconomic groups, it is important that the U.S. Congress and the public receive regular information regarding NIH activities that include objective performance indicators. The progress that has been achieved toward this goal can be assessed at three levels: (1) reductions in cancer incidence and mortality rates and increased cancer survival rates; (2) changes in cancer risk behavior among affected populations, such as reductions in tobacco use or efficiency of vaccination programs against hepatitis B as a means of reducing risk for primary cancer of the liver; and (3) process-related changes at NIH that reflect new organizational standards, policies, and priorities designed to better address the needs of ethnic minority and medically underserved communities. It is assumed that changes at the organizational level will result in positive outcomes in the behavior of risk groups, which in turn will result in reductions in cancer incidence and mortality and increases in cancer survival.

Copyright © 1999, National Academy of Sciences.
Bookshelf ID: NBK1800


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