Panel Urges More Public Input at NIH

WASHINGTON, D.C.--The public should have a more direct say in how the National Institutes of Health (NIH) develops strategies for disease research, concludes an independent review. NIH leaders should also keep better track of how much money is spent on each disease, according to the report, released here today by the Institute of Medicine (IOM). The report urges NIH institutes to be more forthcoming about future plans and make their decisions "open and understandable" to people who now feel shut out.

Congress commissioned this study last year, asking IOM to look into complaints from disease interest groups that biomedical research chiefs were not doing a good job of explaining their funding decisions. After a 6-month inquiry, the panel concluded that NIH's criteria for setting priorities are sound. (NIH relies on expert judgment to determine the best scientific opportunities and seeks to fund a balance of basic science, clinical research, and some technology development.) But the panel found a "major weakness"--NIH's leaders do not communicate with the public as well as they might. The NIH director's office, according to the report, "does not have adequate channels through which members of the public can express their concerns to NIH or through which they can receive information. ..."

To remedy that flaw, the report says, NIH should create a new Council of Public Representatives in the office of the NIH director. The 18 to 25 people named to this new panel, according to IOM, should represent "a broad range of public constituencies," including "disease specific interest groups, ethnic groups, public health advocates, and health care providers." They would be supported by a new permanent staff of "public liaison" officers based at each of NIH's 21 institutes and centers.

NIH director Harold Varmus said he was "pleased that the IOM study endorsed the basic processes and criteria" NIH uses to set budget priorities. However, he indicated that NIH has no immediate plans to change its data-gathering or public advisory processes, although he added that "we will be reviewing the report and recommendations in detail... over the next several months."