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Date: July 8, 1998
Contacts: Dan Quinn, Media Relations Officer
Dumi Ndlovu, Media Relations Assistant
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EMBARGOED: NOT FOR PUBLIC RELEASE BEFORE 11 A.M. EDT WEDNESDAY, JULY 8

NIH Should Seek Greater Public Input
When Setting Research Priorities

WASHINGTON -- The National Institutes of Health (NIH) should seek broader public input on decisions about how to spend its nearly $14 billion budget, says a new report from a committee of the Institute of Medicine. The criteria that NIH uses to set priorities for funding research are scientifically sound, but could be improved and better accepted if the public had more say. The agency should create new public liaison offices in the office of the director and in all of its 21 research institutes to allow interested people to formally take part in the process. Further, it should strengthen the role of the director to improve planning and accountability, the report says.

"By creating formal links to the general public, NIH can ensure that all have a voice in what gets funded, and that more people understand how such decisions get made," said committee chair Leon Rosenberg, professor, department of molecular biology and Woodrow Wilson School of Public and International Affairs, Princeton University, Princeton, N.J. "Ultimately, this input will help NIH apply the knowledge it advances to the best use for society."

NIH is the single largest funder of health research in the United States, and research it has supported has been pivotal to the explosion of biomedical knowledge over the past century. Scientists and clinicians trained and supported by NIH have advanced the fundamental knowledge of human biology and ways to treat or prevent disease and promote good health. As NIH's success has grown, so has pressure in recent years from advocacy groups and other members of the public to devote more spending to their health concerns.

Some of NIH's institutes have offices devoted to soliciting public views. These offices should be established in all of the institutes, the report says, and each should document its efforts to generate public input. A new central Office of Public Liaison should be established within the office of the NIH director to evaluate and coordinate the work that each institute is doing to reach out to the public, and to work with groups concerned about cross-cutting issues. In addition, the NIH director should establish a council of public representatives. Its function would be to act as a forum for a two-way exchange of information between the NIH director and the public. It would not set priorities regarding the NIH budget or its research programs.

Guiding Criteria

NIH currently uses five major criteria to set its overall priorities: public health needs; scientific quality of the research; potential for scientific progress; portfolio diversification along the broad and expanding frontiers of scientific knowledge; and support of the people, equipment, instrumentation, and facilities needed for research.

The agency should continue to use these criteria in a balanced way, the committee said, and should increase public awareness of how they are implemented. NIH should be able to show, for example, that it systematically has compared data on the burdens and costs of particular diseases against the resources devoted to them. Such calculations can be difficult, since research cannot successfully address all health problems, and since fundamental research often leads to unexpected applications. But to enhance the legitimacy of the agency's priority-setting process, these data should be obtained more systematically and consistently. Furthermore, combining these data with information on spending by other organizations could help NIH identify opportunities and gaps in current research.

Currently, most priority setting at NIH is decentralized, with each institute given responsibility for identifying key research opportunities in its area. The NIH director needs more authority to help ensure a unified, agency-wide planning process, and to coordinate research that cuts across institutes. The director should require annual multi-year strategic plans from all institutes, and use this information in overseeing the priority-setting process. And Congress should make needed adjustments to the level of funding for research management and support so that NIH can improve its capacity for analysis, planning, and public interaction.

Congressional Intervention

Congress has the authority and responsibility to intervene in NIH's priority-setting process if it thinks that the agency is neglecting an opportunity or is not responding to a need. Congress should exercise this authority only when other priority-setting approaches have proved inadequate, the report says.

NIH should provide Congress with analyses of how it is responding to public input. The NIH director also should periodically review and report on the organizational structure of the agency in light of advances in science and the changing health needs of the public. By demonstrating that its priority-setting process is fair and open, NIH can reduce the likelihood that Congress will mandate specific research programs, establish levels of funding for them, or implement new organizational entities.

A committee roster follows. The Institute of Medicine is a private, non-profit organization that provides health policy advice under a congressional charter granted to the National Academy of Sciences. The study was funded by the National Institutes of Health. It was requested by Congress.

Read the full text of Scientific Opportunities and Public Needs: Improving Priority Setting and Public Input at NIHfor free on the Web, as well as more than 1,800 other publications from the National Academies. Printed copies are available for purchase from the National Academy Press Web siteor at the mailing address in the letterhead; tel. (202) 334-3313 or 1-800-624-6242. Reporters may obtain a pre-publication copy from the Office of News and Public Information at the letterhead address (contacts listed above).