Scientific Opportunities and Public Needs Improving Priority Setting and Public Input at the National Institutes of Health (1998) / Chapter Skim
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Mechanisms for Public Input
Mechanisms for Public Input
Pages 53-68
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From page 53... ...
, and yield more widely accepted decisions (National Research Council, 1989, 1996~. In the case of NIH, public participation can help leaders better understand the public's view of health research issues and help citizens better understand critical research policy issues.
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From page 54... ...
at the expense of funding for others.' This is especially true when the overall NIH budget has been level or growing slowly. Thus, in addition to advancing the nation's overall investment in health research, advocacy efforts can create a contentious environment for those trying to set research priorities, be it Congress or NIH.
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From page 55... ...
There is no reason to expect that this strategy will not continue to be an effective and legitimate mechanism for public input into the process. The second course is to approach NIH directly, seeking additional or redirected resources for research important to the group.
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From page 56... ...
In 1997 the Congressional Research Service described the perception of some members of Congress and the public that NIH spending often follows current politics and political correctness or responds to media attention to certain diseases which results in unacceptable disparities in spending. For example, the Parkinson's Action Network claimed that in 1994 NIH spent more than $1,000 per affected person on AIDS research, $93 on heart disease, and $26 on Parkinson's disease.
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From page 57... ...
Although some mechanisms for public input, both formal and informal, currently exist, sufficiently recognizable and accessible points of entry do not exist for those who wish to provide public input but who are unfamiliar with the intricacies of NIH's current complex and varied priority-setting processes. This flaw has exacerbated long-term, unresolved issues about the relative influence of disease-specific interest groups on the NIH priority-setting process.
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From page 58... ...
describes the system, but the explanation is complicated and does not indicate how concerned people can provide input to the priority-setting process, especially those who would not naturally have easy access to this process. NIH interacts with various constituencies, including · extramural research scientists, · non-research-oriented clinicians who apply research results and who can identify research needs (physicians, including specialized physicians, nurses, dentists, pharmacists, social workers, psychologists, public health practitioners, and other allied health practitioners)
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From page 59... ...
Unlike the national councils at each institute, ACD does not oversee or advise the director on a specific research portfolio, except for whatever advice it provides on the use of the director's discretionary funds, transfer authority, or Areas of Research Emphasis (see Chapter 31. Presumably, the NIH director may consult with ACD on the overall NIH budget or new initiatives as he or she sees
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From page 60... ...
The report of the NIH AIDS Research Program Evaluation Working Group describes the process and lists the participants (National Institutes of Health, 1996~. The National Institute of Environmental Health Sciences and the Office of Minority Health have each held town meetings around the country to increase public understanding of NIH programs and solicit public input.
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From page 61... ...
Third, the NIH director has increased his role in priority setting (partly by exercising additional authorities granted to him by Congress) , but a formal mechanism through which the public can inform the priority-setting process is lacking.
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From page 62... ...
The public membership of NIH policy and pro gram advisory groups should be selected to represent a broad range of public constituencies. Offices of Public Liaison: Rationale, Roles, and Responsibilities Establishing an Office of Public Liaison within the Office of the NIH Director will facilitate and enhance two-way communication with the public and go far toward addressing the concerns of Congress and the public about how NIH sets research priorities.
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From page 63... ...
Given the importance of the public outreach function in NIH's overall mission, especially after it is expanded and reorganized in accord with this recommendation, the director of NIH should consider putting this set of functions of the Office of Public Liaison under an associate director who is on the same functional level as the other associate directors in the Office of the Director. It is also imperative that additional funds and personnel be made available to fulfill the goals of public liaison.
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From page 64... ...
The NIH director's Office of Public Liaison should coordinate the development, testing, and dissemination of outreach materials. In addition, staff in the director's Office of Public Liaison should routinely collect from the 21 institutes and centers data relevant to each institute's responsibilities, report their findings to the NIH director, and respond to requests from interest groups that cannot be adequately referred to appropriate institutes and centers or whose interests cross multiple institutes.
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From page 65... ...
The committee believes that it would go a long way toward reducing the pressure on Congress to micromanage NIH as well as serving as a valuable forum in which the director and public representatives can share their views and concerns. As an advisory council, the key functions would be to interact on a formal basis three to four times a year and advise the NIH director on how best to · develop potential mechanisms for interaction with and engagement of the public in the NIH priority-setting process, including the review of the activities of the Of rices of Public Liaison; · achieve broad representation of the public on standing and ad hoc policy and program advisory bodies, including national advisory councils; · enhance public understanding of the mission and priority-setting process of NIH; · consider the health concerns of special populations, for example, members of particular ethnic groups, underserved individuals, elderly people, women, children, and those with chronic diseases or disabling conditions; · refine and improve the presentation of data on the allocation of research funds for particular diseases; · identify best practices for receiving public input and advocating their replication across NIH; and · identify and recruit public members for participation across NIH.
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From page 66... ...
NCI, NIAID, the National Institute of Environmental Health Sciences, and other institutes, centers, and offices provide good examples, in that they have in place processes and structures for effectively involving consumers in priority setting, policy and program advisory bodies, and the annual budgeting process. The Director's Council of Public Representatives, recommended above, could play a role in identifying best practices and advocating their replication across NIH.
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From page 67... ...
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From page 68... ...
In the long run, however, the committee believes that the contribution made by these offices and the Council will prove to be cost-effective in terms of carrying out NIH's mission to improve health through research and will contribute to overall goodwill on the part of the public and Congress toward NIH. Each entity-the Director's Council of Public Representatives, the network of Offices of Public Liaison, and the existing advisory bodies to the director of NIH and the institutes has its own rationale and roles that should improve NIH's priority-setting process.
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