NEWS

How to Divvy Up NIH's Research Pie Sparks Debate

Judith Randal

In a perfect world, there would be few complaints about how the National Institutes of Health disburses its annual budget — at its current $15.6 billion level, by far, the largest of any civilian science-driven agency in the federal government.

The reality, however, is that there has been and continues to be considerable controversy about how the pie is sliced. Could it somehow be apportioned differently to the greater satisfaction of most — if not all — concerned; without compromising the quality of what many regard as the world's foremost institution of its kind?

These questions were the focus of a recent meeting held in Washington, D.C., by the Hastings Center of Garrison, N.Y., a think tank devoted to bioethics. The meeting used as its point of departure a report on "Scientific Opportunities and Public Needs: Improving Priority Setting and Public Input at NIH," which was produced by an Institute of Medicine committee at the request of Congress last year.

Leon Rosenberg, M.D., of Princeton University, chaired that committee. As background for the meeting's discussions, he pointed out that opportunities to do promising research have been growing faster than the NIH budget, while, at the same time , the agency has been faced with increasing demands from disease-specific interest groups, which have both proliferated and become more outspoken about their needs.

"Disease advocacy used to be a one-person show in the person of Mary Lasker," said Rosenberg, a reference to the late New York City philanthropist and prominent socialite who was a driving force behind the instigation and passage of the landmark 1971 National Cancer Act. "It's very different today."

New Council

To meet this situation, the IOM committee urged NIH to create a council of Public Representatives in the Office of the Director. Nominations for the Council, which is modeled on one already in place at the National Cancer Institute, are complete and it is expected to be ready later this year to act as a forum for an exchange of ideas.

To qualify for this panel, prospective members have had to agree to subordinate any interest they may have in a particular area of research or disease to the goals of the NIH as a whole. Meanwhile another suggestion made by the IOM committee will be implemented, too. Also modeled on an arrangement that was pioneered at NCI, it wll establish — again in the Office of the NIH Director — an Office of Public Liason. Similar offices are being established in each of the agency's 21 institutes.

Still, anyone thinking that such measures can be guaranteed to fully silence NIH's critics would have had second thoughts had they heard Laurie Flynn, the executive director of the National Alliance for the Mentally Ill, Arlington, Va., speak at the Hastings Center meeting.

Flynn reported that, at the NIH in general and at meetings of its advisory councils in particular, people who are not scientists risk having their concerns or their constituents taken less seriously, so that representatives of these groups, though politely received, often come away feeling patronized.

Flynn told conference participants that groups like hers that advocate for patients and their families "are not going to be satisfied just being fund raisers" for research causes. "It needs to be recognized that we can bring value — not just voices — to the [research] process," she said.

Another NIH critic at the meeting was Alan Kraut, Ph.D., executive director of the American Psychological Society in Washington, D.C. His quarrel with the agency is what he regards as the stepchild status of behavioral research at most NIH institutes because, he said, of their preoccupation with the disease model of research and with genetics and molecular biology.

Arguing that this is not in the best public interest, Kraut said, "Behavior is a central issue not only in mental and addictive disorders but also in the prevention and management of heart disease, cancer, diabetes, aging, and the full range of conditions that NIH addresses."

However, Kraut later conceded that a joint project of the National Institute for Drug Abuse and the NCI has, in particular, given him cause for hope. It is to be devoted to tobacco-use research (see sidebar) that will be done at an estimated five or more centers across the nation at a combined cost to the two institutes of $14 million annually for 5 years. Successful applicants for this program will be notified on or before Sept. 30, the end of the federal fiscal year.

Public Input

Nonetheless, the overarching goal expressed at the Hastings Center meeting was how to get more public input into the priority-setting at NIH overall.

Among the IOM report's recommendations to empower the public with better informational support was that NIH systematically gather data (or obtain it from elsewhere) on the burdens and costs of particular diseases and use the results to put the agency's research investment in these disorders into a comparative perspective. A seemingly straightforward concept, but as was elaborated on by various speakers, such appraisals can be fraught with their own complexities.

At the University of California, Irvine, health policy analyst and planner, Tammy Tengs, Sc.D., has specialized in this sort of analysis. The amount of research support for virtually any disease, she said, can be plotted against many variables: for example, the incidence of the disease in the population, its mortality and morbidity rates and its costs to patients, their families, taxpayers, and private health insurers.



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Dr. Tammy Tengs

 
Accordingly, said Tengs, it is not just the sheer number of variables that can complicate priority setting, but that disagreements can arise about which variables matter most. To some people, she said, it is the diseases with the greatest mortality that merit the most research, while others may argue that it should be the disorders that, regardless of their fatality rates, most damage the quality of life.

Tengs said that further complicating the calculations is that basic research that targets fundamental biologic processes often sends science in unanticipated and promising directions, and that many people confront several health problems simultaneously, particularly as they age.

Indeed, Tengs cautioned, no one measure or even set of measures can numerically capture the entirety of disease burden, so that it would be foolish to insist that the amount of research money NIH allots to a disease exactly correspond to its impacts. That could besides, she noted, squander opportunities for making discoveries that ultimately may bring not just one disease but several under dramatically better control.

On the other hand, no one at the meeting — Tengs included — thought that disease burden is irrelevant to priority setting. Indeed, most seemed to agree that more information of this kind could — if properly nuanced and made understandable — help to improve the effectiveness of public input at NIH.

Princeton University's Rosenberg, in fact, went so far as to say that NIH should be willing to invest in this effort even if the agency has to pay for it by funding fewer research grants.



             
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