Chapter 2: The Burden of Cancer Among Ethnic Minorities and Medically Underserved Populations

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 or insufficiently studied burdens of cancer, as measured by cancer incidence, morbidity, mortality, and survival statistics.

Recommendation 2-2a: To further enhance the excellent data provided in the Surveillance, Epidemiology, and End Results (SEER) program database, adequate resources should be provided to expand SEER program coverage beyond the existing sites to include high-risk populations for which SEER program coverage is lacking. This expansion should address a wider range of demographic and social characteristics by using consistent nomenclature and a uniform data set and by reflecting the diverse characteristics of the current U.S. population.

Recommendation 2-2b: NCI should continue to work with the North American Association of Central Cancer Registries and other organizations to expand the coverage and enhance the quality of the 45 non-SEER program state cancer registries, with the intent of ultimately achieving—together with the SEER program state registries—two goals: (1) a truly national data set obtained through a system of longitudinal population-based cancer registries covering the entire country, and (2) a reliable database for each state to serve as the basis for both the development and the evaluation of cancer control efforts in that state.

Recommendation 2-3: Annual reporting of cancer surveillance data and population-based research needs to be expanded to include survival data for all ethnic groups, as well as for medically underserved populations.

Recommendation 2-4: The committee recommends an emphasis on ethnic groups rather than on race in NIH's cancer surveillance and other population research. This implies a conceptual shift away from the emphasis on fundamental biological differences among "racial" groups to an appreciation of the range of cultural and behavioral attitudes, beliefs, lifestyle patterns, diet, environmental living conditions, and other factors that may affect cancer risk.

Recommendation 2-5: The committee commends the proposed NCI program of expanded behavioral and epidemiologic research examining the relationship between cancer and cancer risk factors associated with various ethnic minority and medically underserved groups and recommends that these studies be conducted both across and within these groups.

Chapter 3: Overview of Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health

Recommendation 3-1: The Office of Research on Minority Health should more actively serve a coordinating, planning, and facilitative function regarding research relevant to cancer among ethnic minority and medically underserved populations across relevant institutes and centers of NIH. To further this goal, the Office of Research on Minority Health should

• make criteria for Minority Health Initiative project support explicit;
• coordinate with other specialty offices (e.g., the Office of Research on Women's Health) by participating in NIH-wide coordination efforts such as the Research Enhancement Awards Program; and
• ensure that Minority Health Initiative funding does not supplant funding from institutes and centers for research and programs relevant to ethnic minority and medically underserved populations.

Recommendation 3-2: Research and research funding relevant to cancer among ethnic minority and medically underserved populations should be more adequately assessed (as per Recommendation 3-3) and should be increased.

Recommendation 3-3: NIH should improve the accuracy of its assessment of research that is relevant to ethnic minority and medically underserved groups by replacing the current "percent relevancy" accounting method with one that identifies studies whose purpose is to address a priori research questions uniquely affecting ethnic minority and medically underserved groups.

Recommendation 3-4: The newly established program of behavioral and social science research at NCI addresses an area of research that has been neglected in the past. The committee urges that this program of research identify as one of its highest priorities a focus on the cancer prevention, control, and treatment needs of ethnic minority and medically underserved groups.

Recommendation 3-5: Collaborations between NIH and research and medical institutions that serve ethnic minority and medically underserved populations should be increased to improve the study of cancers that affect these groups and to increase the involvement of such entities and populations in scientific research.

Recommendation 3-6: NIH should increase its efforts to expand the number of ethnic minority investigators in the broad spectrum of cancer research to improve minority health research. These efforts should (1) assess relevant areas of research needs and ensure that trainees are representative of these disciplines and areas of inquiry, (2) determine guidelines for the quality and expected outcomes of training experiences, and (3) maintain funding for a sufficient period of time to assess the impact of training programs on the goal of increasing minority representation in cancer research fields.

Chapter 4: Evaluation of Priority Setting and Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health

Recommendation 4-1: NCI should develop a process to increase the representation of ethnically diverse researchers and public representatives serving on all advisory and program review committees so that the makeup of these committees reflects the changing diversity of the U.S. population. 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.

Recommendation 4-2: The research needs of ethnic minority and medically underserved 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 the needs of ethnically diverse and medically underserved populations effectively, the Office of Special Populations Research (or some other designated entity or entities) must possess the authority to coordinate and leverage programs and resources across the divisions and branches of NCI to stimulate research on ethnic minority and medically underserved populations. This authority can be established by providing such an office with:

• special resources to fund programs specifically targeted to these populations, or
• accountability for the institution-wide allocation of program resources.

Recommendation 4-4: Investigator-initiated research must be supplemented to ensure that the cancer research needs of ethnic minority and medically underserved populations are addressed.

Chapter 5: Advancing State-of-the-Art Treatment and Prevention

Recommendation 5-1: NIH and other federal agencies (particularly the Health Care Financing Administration) should coordinate to address funding for clinical trials, particularly to address the additional diagnostic and therapeutic costs associated with prevention trials and third-party payment barriers associated with clinical treatment trials.

Recommendation 5-2: NCI should continue to work with other appropriate federal agencies and institutional review boards to explore creative approaches to improving patients' understanding of research and encouraging them to provide consent to participate in research. These approaches should address cultural bias, mistrust, literacy, and other issues that may pose barriers to the participation of ethnic minority and medically underserved groups.

Recommendation 5-3: NCI should report on the accrual and retention of ethnic minority and medically underserved populations in clinical trials using a consistent definition for medically underserved populations, including such characteristics as rural versus urban population, insurance status, socioeconomic status, and level of literacy.

Recommendation 5-4: NCI should continue to assess its dissemination practices to identify effective cancer information delivery strategies among ethnic minority and medically underserved populations, revise and implement the strategic dissemination plan on the basis of the results of that research, and institute an ongoing system of monitoring to assess its effectiveness.

Chapter 6: Cancer Survivorship

Recommendation 6-1: NCI should establish a strategic plan to address the cancer survivorship needs of ethnic minority and medically underserved groups, including coordination of an overall research agenda on survivorship and a more structured framework for monitoring knowledge, attitudes, and behavior regarding cancer survivorship.

Chapter 7: Monitoring and Reporting

Recommendation 7-1: The committee recommends a regular reporting mechanism to increase NIH accountability to the U.S. Congress and public constituencies. Such reports should

• report on data on progress against cancer using the nomenclature "ethnic groups" rather than "racial" groups and include data on medically underserved populations with ethnic group data;
• provide data on the incidence of cancer at several cancer sites, including those cancers that disproportionately affect ethnic minority and medically underserved populations;
• consider as one alternative reporting of mortality data in terms of "potential reduction of deaths," a statistic that is based on the lowest mortality rate among U.S. ethnic groups and that emphasizes the need for cross-cultural studies to ascertain optimal strategies for cancer prevention, treatment, and control;
• link research findings to reductions in cancer incidence and mortality and identify any gaps that may occur in this linkage; and
• report on "process" developments, such as the number and type of research programs specifically targeted to ethnic minority and medically underserved groups and the contributions of ethnic minority scientists and community groups to the research priority-setting process.