CHICAGO—Last year’s Institute of Medicine (IOM) report to the US Congress about research that relates to minority and medically underserved populations was bound to generate controversy because part of its purpose was to look at the amount of resources spent on studying these groups.
However, disagreement over the dollar figures that are targeted to minorities and the medically underserved has overshadowed the real praise IOM committee members had for efforts by the National Cancer Institute (NCI) to include minorities in research as well as their recommendations for building on the already strong foundation of research at the National Institutes of Health (NIH).
“The question of how much is being spent on a specific population has long been controversial at NIH because of the political context for such questions. So it was not surprising that there would be debate. It’s been disappointing, however, that the committee’s main message appears to be lost in the debate over whose figures are correct,” IOM project director Brian Smedley, PhD, told ONI in an interview. He spoke on the subject at the Second Annual Cancer Care Symposium, sponsored by the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
When the IOM Committee on Cancer Research Among Minorities and the Medically Underserved asked NIH and NCI how much money they were spending on projects involving ethnic minorities and low-income populations, it got two answers: NIH said that in fiscal year 1997, $124 million was devoted to research that was considered to be relevant to the target groups and $44 million was spent on research specific to what NIH categorizes as “special populations.”
Dr. Smedley said that, in arriving at the $124 million figure, NIH calculated a percent relevancy score, which reflected the percentage of minorities and medically underserved individuals who were enrolled in research studies in fiscal year 1997. For example, if a breast cancer study had a total of 1,000 subjects and 300 were ethnic minorities, NIH would conclude that 30% of the budget for the study was spent on research involving minorities.
The $44 million total for special populations was based on the amount of resources devoted to research that included not only ethnic minorities but also other populations, such as blue collar workers, rural residents , and other groups who may be at increased risk for cancer by virtue of their occupation, living conditions, or low socioeconomic status.
[The explanations of the percent relevancy score and amounts allocated to special populations were obtained from IOM; representatives from NCI could not be reached for comment.]
As a result, neither the $124 million nor the $44 million figure was appropriate, according to the IOM committee, because neither calculation dealt with Congress’ principal concern.
“Congress wanted to know how much is being spent specifically to address the research needs of minorities and medically underserved populations or to address the very real gaps in our research understanding about why some groups have a greater risk for cancer as opposed to others. Those questions are not really adequately answered by reporting a percent relevancy score or by reporting the amount of money spent on special populations,” Dr. Smedley said.
The IOM committee derived its own calculation of the amount of resources expended on cancer research among minorities and the underserved, which, at $24 million, was considerably lower than NIH’s calculation. Even this figure was not completely satisfactory because NIH does not code research projects on the basis of the projects’ underlying research questions. “If a research study posed a specific hypothesis about the disproportionate burden of cancer in ethnic minorities or the medically underserved or posed some other question that would help to increase our understanding of cancer in those populations, then the committee would argue that those studies should be included in the total amount that is being spent by NIH on cancer research among those populations,” Dr. Smedley said.
Among its recommendations, the IOM committee called for NCI to devise a uniform definition of special populations based on the burden of cancer. The panel also asked NIH to enhance the accuracy of its calculation of research funding by adopting a new accounting system founded on the research questions that drive clinical studies, not on the percent relevancy of enrolled populations.
The debate over whose figures were correct also “underscored one of the committee’s major points, and that is the need for an objective and verifiable coding scheme that would allow NIH to report to Congress a figure that scientists and the lay community can trust. The only way to do that is to look at the nature of the research question that is being posed,” Dr. Smedley said.
