Burden of Disease and NIH Funding Priorities

Co-Authored by Carrie Wolinetz and Sally Rockey

Recently, many voices have asked how NIH considers public health needs when setting funding priorities. The quick answer is that public health needs are a critical factor in our decision making-in addition to scientific merit, portfolio balance, and budgetary considerations. But the question of how one measures public health need, as it turns out, isn’t as simple as you might think.

Public health needs are not only reflected by how many people have a particular disease, but also by the burden of disease – the impact of a health condition as measured by mortality, morbidity, financial cost, and other indicators. Different diseases can impose vastly different kinds of burdens. Some diseases may cause premature death, while other chronic conditions may cause long-term disability and impose a great emotional and monetary toll for patients, family members, and society. Many diseases vary widely in the severity of symptoms, the acute vs. chronic nature of the disorder, treatment strategies, and health outcomes. A thousand people with influenza, for example, is not equivalent to a thousand people with headaches. To further complicate matters, identifying affected individuals can be challenging; diagnosing certain psychiatric disorders is far different than diagnosing diabetes. Current disease burden may not necessarily predict future disease burden. Consider the potential burden that the recent Ebola epidemic may have created had it not been contained. And finally, NIH will invest in research on certain diseases that are close to a cure, to propel us towards the ultimate goal of eradication.

Clearly, there can be no “one size fits all” approach to measuring and comparing the burden across different diseases. Nevertheless, we wanted to look at a few possibilities for depicting the relationship between disease burden and NIH funding. Thus, NIH’s Office of Extramural Research and Office of Science Policy collaborated on an exploratory analysis, which you can see on our new burden of disease page on RePORT. This page illustrates how NIH funding levels relate to U.S. and global deaths and disability-adjusted life years (DALYs)—a measure that quantifies the number of healthy years of life lost due to morbidity or premature mortality caused by disease. This analysis comes with several caveats, however, and more information can be found via the methodology link on the disease burden page.

We think you’ll find these data and we hope this analysis contributes to the conversation of advancing public health through scientific research. That being said, disease burden can’t be the only factor in setting funding priorities. NIH is also committed to funding research into rare diseases, which affect a smaller component of the population, thus skewing burden measures. Much of the NIH portfolio involves basic research, which seeks to understand the basic biological processes involved in both health and disease. Basic research doesn’t neatly map onto the burden of a single disease or condition, especially for areas such as genetics or pediatrics. Many of the projects from NIH’s basic research portfolio produce findings that can have implications for the cause and treatment of a variety of diseases, and can be applied across several fields.

As NIH sets its priorities, it’s important that we monitor the public health landscape for unmet needs and emerging challenges, so that the research we support translates into meaningful health benefits. Scientific disciplines mature at different rates, and not all areas are equally ripe for major scientific progress. For example, advances in imaging technologies and tools for mapping connections between neurons now allow us to study the brain and the diseases that affect it in a way that would not have been possible a decade ago. Investing the same amount of money into two different areas can generate very different returns for increasing scientific knowledge and advancing human health. Getting the most out of NIH’s research investment means making smart investments, which come from a deep understanding of the scientific landscape. So while we’re looking forward to using these analyses as a jumping off point for a larger conversation about priority setting, NIH believes that a process that includes multiple measurements of public health needs, but is also informed by scientific opportunity, allows us to fund the best science.

Dr. Sally Rockey is the NIH Deputy Director for Extramural Research and blogs about NIH research funding policies and data at her blog, Rock Talk.

Sally Rockey
NIH Deputy Director for Extramural Research