Scientific Opportunities and Public Needs Improving Priority Setting and Public Input at the National Institutes of Health (1998) / Chapter Skim
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Executive Summary
Executive Summary
Pages 1-12
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Additionally, many of these groups do not feel that NIH listens or responds to their inputs. Finally, the leadership of the health committees in Congress has become increasingly uncomfortable with intervening in research priority setting at NIH, for example, by mandating specific funding set-asides, new programs or institutions focused on specific diseases, or the use of particular research mechanisms or by trying to
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In setting priorities, NIH must also adapt to a changing policy environment. Despite having a growing budget, scientific research opportunities have grown even more rapidly, as has awareness of health problems as the population ages and as globalization exposes the U.S.
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Given the objective of responding to health needs as well as scientific opportunity, in conjunction with the expansion of organized disease-specific interest groups, are the mechanisms for public input adequate, or can they be changed to increase the complementarily between NIH's goals of responding to health needs and scientific opportunity7 Can Congress, the holder of the public purse strings, be assured that NIH has a rigorous process for priority setting in which the full range of considerations is taken into account in planning programs and allocating Finding? The committee concludes that NIH's system for setting priorities has generally served NIH and the nation well in supporting research to improve human health, but some changes would strengthen it, especially in mechanisms for exchanging information and concerns with interested individuals and groups.
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To enhance the legitimacy of and support for its priority-setting and resource allocation processes, NIH should work to increase the level of understanding of its criteria by the general public and of how they are implemented and should engage in regular evaluations of how the criteria are used and of their impacts. The Setting Research Priorities booklet and other documents are not as effective at gaining public understanding as they could be, for example, in informing citizens who are concerned about health and particular diseases about how they can become involved (an issue addressed more fully below in the section Mechanisms for Public Input)
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NIH should also collect and analyze data on health research spending by others, such as other federal agencies, industry, nonprofit health organizations that fund research, foundations, or other countries. This should help identify gaps, overlaps, and opportunities for joint efforts and ensure that NIH invests wisely in areas and approaches that no one else is funding, provides the appropriate coordination, and supports the training of personnel and the other infrastructure needed in the national research enterprise.
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Recommendation 5. In exercising the overall authority to oversee and coordinate the priority-setting process, the NIH director should receive from the directors of all of the institutes and centers multiyear strategic plans, including budget scenarios, in a standard format on an annual basis.
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This structural weakness has important implications: first, because patient advocacy groups have become better organized and more proactive on behalf of their interests and have greatly increased their appeals to Congress to intervene to adjust NIH research priorities; second, because congressional leaders have expressed a strong desire to avoid mandates and earmarks in favor of particular diseases and to let NIH set research priorities; and third, because the NIH director has increased his role in priority setting (partly by exercising additional authorities granted to him by Congress)
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The Director's Council of Public Representatives an advisory group made up of citizens who are either patients, family members of patients, or advocates for patients serves to elevate public input into the priority-setting process to the highest level of NIH in a systematic and periodic manner. Importantly, the Council will not set priorities regarding the NIH budget or its research programs.
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The committee believes that public input, which has been important in sustaining the growth and stature of NIH, is an important component of the priority-setting process and, if used wisely by NIH when setting research priorities, will make for a stronger and more responsive NIH. It also believes that although implementation of these recommendations will not supersede or remove the potential for appeals to Congress, their enactment will reduce the need for such appeals.
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Congress should adjust the levels of funding for research management and support so that NIH can implement improvements in the priority-setting process, including stronger analytical, planning, and public interface capacities.
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