WASHINGTON--Concerns that pressure from advocates for specific diseases and congressional mandates have skewed research priorities at NIH led Congress to request a report from the Institute of Medicine (IOM).
The IOM report, "Scientific Opportunities and Public Needs," focuses on the NIH’s need to strengthen its analysis and use of health data in setting research priorities, and to increase the level of public understanding of these criteria and how they are implemented. Data used to set priorities include burdens and cost of diseases, as well as data relating to the impact of research on the public health.
Second, the panel urged that the priority setting process be opened to broader public participation, to reduce the influence of advocacy groups for specific diseases. The panel acknowledged that advocacy groups have played a vital role in promoting biomedical research, while also creating "a contentious environment for those trying to set research priorities, be it Congress or the NIH."
Leon E. Rosenberg, MD, of Princeton University, chair of the 19-member committee, cited some "celebrated examples in which very effective and vocal lobbying and political pressures have affected research allocations--breast cancer and AIDS being two recent examples."
The panel also noted that Congress has felt compelled at times to mandate the creation of new centers or offices at NIH and to specify funding for pet research projects, although Congress generally lacks the expertise to judge scientific opportunities.
The IOM committee called for strengthening the office of the NIH director. "We believe that the NIH director needs more authority to help ensure a unified, agency-wide planning process, and to coordinate research that cuts across institutes," Dr. Rosenberg said.
The committee further urged that:
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Directors of all the institutes and centers should provide the NIH director each year with multiyear strategic plans, including budget scenarios.
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The NIH director should establish an office of public liaison; strenthen existing liaison offices in its various institutes, centers, and divisions; and create new ones where necessary. The aim is to broaden outreach to the general public beyond the advocacy groups. [See also the interview with Eleanor Nealon, director of the NCI’s Office of Liaison Activities.]
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Public membership of NIH policy and program advisory groups should be selected to represent a broad range of public constituencies.
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Congress should use its authority to mandate specific research programs, establish levels of funding for them, and implement new organizational entities only when other approaches have proven inadequate.
Congress should increase the funding needed to manage research so NIH can implement improvements in the priority-setting process, including stronger analytical planning and interaction with the public.
