CHICAGOThe Institute of Medicine (IOM) report to the Congress about research that relates to minority and medically underserved populations lauded many of the efforts the National Cancer Institute (NCI) has undertaken to conduct research and sponsor training programs involving ethnic minorities and the medically underserved, while making recommendations for improvement.
These aspects of the report have been largely ignored as attention has focused on the disagreement between the NCI and the IOM over the amount of re-sources allocated to research involving minorities and the medically underserved (see article below).
History of the IOM Report
The IOM summary report, The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved, was the result of a request by Congress in 1997 to review the research programs at NIH that were relevant to ethnic minorities and medically underserved populations.
Congress asked for the analysis because of documented disparities in the burden of cancer among these groups. Many ethnic minorities, such as blacks, Asians, Hispanics, Vietnamese, and Alaskan Natives, suffer higher cancer incidence and mortality rates than the majority of the white population or the overall national average. However, low-income white populations have rates for some cancers as high or higher than those of minorities.
IOM consequently convened a committee in 1998 to examine a number of questions related to NCI and NIH research that is directed toward ethnic minorities and the medically under-served.
These include the share of resources allocated to cancer research for these populations, the ways the results of research are applied to cancer prevention and treatment programs for minorities and the medically under-served, and the procedures for recruiting and retaining minorities in clinical trials.
The committee felt that NIH and NCI, although doing many good things, were not doing enough to address the unequal burden of cancer in minority and medically underserved populations. The committee hoped to assist the Institutes in addressing issues related to these populations by putting forth a reasoned critique and by offering recommendations to improve the ways in which these issues are addressed, Gilbert Friedell, MD, said in an interview with ONI.
Dr. Friedell is director emeritus of the Markey Cancer Center, University of Kentucky, Lexington, and a member of the IOM Minorities and the Medically Under-served Committee.
The report stated that the committee was impressed by the momentum surrounding these issues at NCI, and said that some of the recommendations were already in the process of being implemented before the report was completed. The committee has felt free to make its recommendations always with the best interests of the populations concerned in mind and with the hope that the already excellent leadership provided by NCI will become even better, the report said.
Several committee recommendations dealt with the collection of data. While noting that the Surveillance and Epidemiology End Result (SEER) program does an outstanding job of accumulating data, the committee advocated increased funding to expand the program, include a wider range of demographic and social characteristics, and reflect the diverse characteristics of the US population.
The committee felt that annual reporting of cancer surveillance data and population-based research should include survival information on all ethnic groups.
It also advised the NCI to work with the North American Association of Central Cancer Registries and other organizations to improve the coverage and quality of the 45 non-SEER program state cancer registries in order to achieve a truly national dataset and a reliable database for every state.
We are suggesting not to abolish the state registry or have one national registry but that we have more cooperation between the SEER program and the state registries, said M. Alfred Haynes, MD, former president and dean, Drew Postgraduate Medical School, and former director, Drew-Meharry-Morehouse Consortium Cancer Center, Rancho Palos Verdes, California. He spoke at the Second Annual Cancer Care Symposium, sponsored by the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
The committee commended the NCIs planned effort to expand behavioral and epidemiologic research in order to examine the relationship between cancer and cancer risk factors associated with ethnic minorities and medically under-served groups.
This is an area where NCI already has been doing a very important body of work, IOM project director Brian Smedley, PhD, told ONI. The committee urged that NCI further enhance these efforts by identifying behavioral and social science research as one of its highest priorities and by focusing on cancer prevention, control, and treatment needs of ethnic minorities and the medically underserved.
Race vs Ethnic Groups
One of the most controversial areas of the IOM committees report asked that NCI replace the use of the word race with ethnic groups in its cancer surveillance and population research.
What we currently refer to as racial groups are more appropriately termed ethnic groups, according to the report, Dr. Smedley said. Thus, African Americans represent an ethnic group, and, similarly, European Americans, American Indians, Asian Amerians, and Hispanics, each constitute an ethnic group.
Dr. Haynes added, The committee came to the conclusion that we ought to discontinue the use of race purely on scientific grounds. There is no scientific evidence to date that will justify the classification of human populations into four or five or six different racial groups. There is so much diversity within groups and between groups that each of us is unique.
The minorities committee also wanted to emphasize the fact that lifestyle, diet, and habits have a great deal to do with the development of cancer. By emphasizing ethnic groups, we felt we could more fully explore these factors, Dr. Haynes added.
The committee asked NIH and other federal agencies to address the issue of funding for clinical trials, especially to cover the additional costs of diagnostic tests and therapeutic procedures when third-party payment barriers exist, and to apply a consistent definition of medically underserved populations when accruing and retaining individuals in clinical trials. Such a definition should take into consideration such factors as rural or urban residency, insurance status, socioeconomic status, and literacy level.
The committee advocated better coordination among programs across NCI in order to address the needs of ethnically diverse and medically underserved populations as well as collaboration between NIH and research and medical institutions that serve these populations.
It felt the Office of Research on Minority Health should assume a more active role in the coordination, planning, and facilitation of research that is relevant to ethnic minority and medically underserved populations.
The panel called for greater numbers of ethnic minority investigators as well as greater representation of ethnically diverse researchers and members of the community on NIH advisory and program review committees.
Finally, the committee suggested that the NIH adopt a mechanism for reporting to the US Congress that:
Reports on the progress against cancer made by ethnic groups rather than racial groups and includes data on medically underserved populations within ethnic group data.
Provides data on the incidence of cancer at several cancer sites, including those cancers that disproportionately affect ethnic minority and medically underserved populations.
Considers reporting mortality data in terms of the potential reduction in deaths, a statistic that is based on the lowest mortality rate among US ethnic groups and that emphasizes the need for cross-cultural studies to ascertain optimal strategies for cancer prevention, treatment, and control.
Links research findings to reductions in cancer incidence and mortality, and identifies any gaps in the linkage.
Reports 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 process of setting research priorities.
Dr. Friedell said that no formal response to the IOM report has been issued by the NCI or the NIH. It is incumbent on NIH and NCI to look hard at the recommendations in this report and respond to them. These several hundred pages deserve a detailed comment. I regret that one hasnt been forthcoming, he said.