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Director’s Blog: Transparency

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Last week we had our annual House appropriations subcommittee hearing to discuss next year’s budget for NIH. The bipartisan enthusiasm for NIH and its mission was striking, so striking that ranking member Rosa DeLauro (D-CT) ended the hearing by suggesting a “group hug.” Amidst the rare bipartisan romance, there were a few challenging questions, including one about how NIH sets priorities. Dr. Andy Harris (R-MD), the only member of Congress who has been an NIH grantee, put it this way: “Eighty-four million Americans have heart disease, and yet the amount we spend per death is a hundred times less on heart disease than it is on HIV/AIDS. A hundred times less per death—that kind of discrepancy just needs to be justified.” Earlier this year, Senator Rand Paul (R-KY) and Congressman Lamar Smith (R-TX), raised a similar question in POLITICO , asking, “So how do U.S. research agencies decide what types of research are deserving of limited federal funds?” Their plea: “The first step toward eliminating wasteful spending should be increased transparency.”

Without accepting the allegation of “wasteful spending,” the request for transparency suggests we can do a better job of communicating what is funded, who is funded, and how funding priorities are set. In fact, a lot of this information is already public. At the RePORT  web portal on the NIH website, for example, anyone can find information on funded grants and funding totals. NIMH, and other institutes, have information on their websites about strategic planning and priorities, and how they invest the money they are appropriated.

Nevertheless, if people are still asking questions about transparency, we need to listen and respond. Today I am posting on our website a white paper—“The Anatomy of NIMH Funding”—to answer many of the most common questions I have heard from both the scientific community and the general public about the NIMH portfolio. What are the trends in funding basic science versus applied science? How much does NIMH invest in services research? Does the Institute support research that is directly relevant to mental health care or is it funding only genetics and imaging? Why does NIMH spend more on AIDS than PTSD, suicide, and bipolar disorder put together? And finally, how does NIMH decide what to fund?

I realize that many assume we should fund based solely on public health need. With this in mind, we mapped NIMH investments against an aggregate measure of public health need, the DALY or disability-adjusted life year. The DALY is not a perfect measure, but it provides a single value that captures both morbidity and mortality. Looking at NIMH funding plotted against DALY estimates, two conclusions become evident (Figure 5 in the white paper). First, some disorders or conditions, such as eating disorders and suicide, receive less funding than they “should” based on DALY estimates. Second, NIMH support for each disorder and condition falls below the predicted level based on support for some 40 other disorders funded by NIH.

If NIMH is not funding solely by public health need, what other factors are in play? At NIMH we talk a lot about scientific traction, areas that offer rapid progress because of new technologies or new scientific opportunities. As one example, over the past decade, the cost of genomic sequencing has fallen from $22M to $2K and the time frame for sequencing a single genome has shrunk from two years to less than one day. The increasing economy, speed, and versatility of genomics offers traction for understanding human disease—including conditions we would not necessarily call “genetic.” No surprise that NIMH has invested in genomics without reference to disorder DALYs. A further problem with funding by DALYs: rare diseases, such as Fragile X or Phelan-McDermid syndrome, have low DALY estimates because of their low prevalence, but they may offer the opportunity for rapid progress for insights into disease mechanisms and novel treatments, insights that can be applied to more common neurodevelopmental disorders. Obviously, as NIMH shifts funding towards the new diagnostic framework embodied by the Research Domain Criteria or RDoC project, there will be even less of a relationship between dollars and the traditional diagnostic labels for which we have DALY figures. This does not mean that NIMH is turning away from public health impact in making funding decisions. Indeed, it is the need to increase public health impact that calls for a break with traditional diagnostic and therapeutic approaches.

I hope “The Anatomy of NIMH Funding” will be useful. No doubt, the data in the white paper will raise new questions. Some of these may be answered with the release of the NIMH Strategic Plan for Research this month. And, since much of the data in this new white paper was drawn from RePORT , you have the opportunity to ask and answer your own questions. You can also ask us directly: questions on NIMH data can be submitted to nimhinfo@nih.gov. Even if we don’t have an answer, your questions can be used to ensure we begin collecting additional data. This is, after all, your money. You should know how it is invested.