CHICAGOLast years 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. Its been disappointing, however, that
the committees 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
[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
NIHs 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 committees 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.