Matthew M Burg, Shawna Ehlers, Allison J Carroll, KayLoni Olson, Josh Eyer
Dr. Francis Collins ended his leadership of the National Institutes of Health (NIH) in late December. This presents an opportunity for change, for a rethinking of the NIH mission, and for a new focus of NIH funding.
We have long known that 40-60% of chronic disease burden – both on the patient and on the healthcare system – is attributable to factors studied within behavioral science. For example, lifestyle and the conditions under which people live (i.e., social determinants of health) have significant impacts on health (Sagner, Katz, Egger, et al, 2014; Nyberg, Singh-Manoux, Pentti, et al., 2020; Centers for Disease Control and Prevention, 2021). Stress (including financial stress, family stress, neighborhood safety, uncertainty) and the associated emotional concomitants contribute as much to heart attack risk as the major risk factors, including hypertension and diabetes. Lifestyle contributes more to heart attack risk than genes. Indeed, a person with low genetic risk and a poor lifestyle is more likely to have a heart attack than a person with high genetic risk and a healthy lifestyle (Khera et al, 2016). During the COVID-19 pandemic, deaths due to COVID can largely be attributed to behavioral factors (e.g., nonadherence to masking, physical distancing, vaccination) (Kelly, Bravata, Bent, et al., 2021; Mendoza-Jimenez, Hannemann, & Atzendorf, 2021). The focus and funding of NIH is inconsistent with this knowledge.
Current status and gaps
The NIH Institutes are largely organized around disease entities, body systems and organs, and physiological processes, including one devoted solely to the human genome. A dedicated focus on human behavior and living conditions as factors that contribute to chronic disease burden are not implicitly part of the structure – or mission – of the NIH. While the NIH funds a great amount of behavioral science, in part through coordination by the Office of Behavioral and Social Science Research (OBSSR), the amount of money directed to research on the behavioral and environmental factors that drive disease burden is far less than the 40%-60% of disease burden attributable to these factors. Furthermore, there is no Institute dedicated specifically to research on how to address behavior to promote health.
The remarkable effort to develop and deliver vaccines in response to the COVID epidemic has been a joint NIH/pharma success. However, this achievement has been overshadowed by the difficulty of ‘getting shots in arms’. Dr. Collins lamented this in recent interviews, stating, “Was there something else we should have done… Maybe investing more in the behavioral research side of this….” (Weiland & Kolata, 2021). The difficulties he describes, and the failure this represents, are part and parcel of the NIH structure and the mission, as “the nation’s medical research agency” that focuses on “biomedical science.”
The role of behavioral medicine
The field of Behavioral Medicine was established at the Yale Conference over 40 years ago. This field of research and clinical practice is, “concerned with the development of behavioral science knowledge and techniques relevant to the understanding of physical health and illness and the application of this knowledge and techniques to prevention, diagnosis, treatment, and rehabilitation” (Schwartz & Weiss, 1978). Successful efforts by this community to reduce chronic disease risk by promoting a healthy lifestyle are reported almost monthly in leading medical journals.
For example, the Diabetes Prevention Project (https://www.cdc.gov/diabetes/prevention/index.html) demonstrated that initiating and maintaining physical activity and healthy food choices was more effective than metformin for delaying the onset of diabetes. Other studies show that similar lifestyle choices are as effective at lowering blood pressure as medications (Whelton et al., 2018). These studies test not only whether healthy lifestyle choices reduce disease risk, but they also test ways to help people structure their environment to encourage and maintain healthy choices. These behavioral clinical trials require public funding, as their findings can seldom be commercialized, unlike medications or medical devices. While some might argue that it is less costly to use pills for lowering lower blood pressure and cholesterol, which significantly reduces deaths from heart disease, many patients stop taking these pills within one year of prescription – and once again, the issue is behavioral (adherence). The power of behavioral and medical science partnerships was demonstrated by an over 60% relative change in tobacco use in the U.S. since 1964, the leading cause of preventable death (from >50% to 15% of U.S. men, from >30% to 12% of U.S. women) (U.S. Department of Health and Human Services, 2020).
Proposed infrastructure changes
- Representative Behavioral Science Leadership within NIH: The behavioral medicine community must be involved in the process of identifying candidates and have ‘a seat at the table’ in selecting of the next NIH Director. It is essential that our professional organizations advocate for this.
- Congressional/Presidential Panel to Examine the Structure of NIH: A special panel is needed to examine NIH structure in light of our current understanding of what drives chronic disease burden and cost.
- Advocacy and Lobbying for Behavioral Science: Behavioral science does not have prominent lobbyists akin to biomedical science, who work with the committees in the house and senate that have the NIH in their portfolio. The ‘ask’ is to ensure inclusion of behavioral science in the breadth of the nation’s research agenda, using the legislative mechanisms previously used to insure requisite inclusion of women and minorities in research. This can also include a mandate for a ‘Behavioral Medicine Division’ in each NIH Institute.
- Protected, Specified Funds for Behavioral Science. Rather than new RFAs, we suggest the funding portfolio of a given Institute reflect the contributors to the disease burden ‘covered’ by that Institute, and thus must include behavioral science.
- Comprehensive Program Research: Program research must include all prognostic factors, not just biomedical (e.g., Specialized Programs Of Research Excellence (SPOREs), Program Project grants, etc.). Specifically, funded programs should be required to include human behavior targets for any disease with known behavioral factors.
- Behavioral Science Program Co-PIs: Behavioral-Medical scientist partnerships should be structured within NIH funding to promote inclusion of behaviors within prognostic models and tests of intervention efficacy. Not accounting for behavioral prognostic factors, such as treatment adherence and vaccine hesitancy, unnecessarily increases unexplained statistical variance and weakens prognostic modeling, such as our ability to predict pandemic trajectories. This lost behavioral knowledge is key to successfully responding to public health emergencies such as the COVID pandemic.
- Representative Behavioral Science Leadership within Centers for Translational Science Awards (CTSAs): CTSAs work to speed translation of scientific research findings into real world medicine and public health guidelines. CTSAs would benefit from having a) a behavioral scientist Center Co-PI, b) behavioral science review for all funded projects, and c) funds for a Behavioral Core with a Behavioral Science Core Lead.
As the Biden administration evaluates its choice for a new NIH Director, recent experiences with COVID vaccination hesitancy, and what this represents more broadly concerning the importance of behavior to chronic disease prevention and management, must be considered. We believe it is time for the NIH to be reorganized in a manner that places appropriate focus on behavior and psychosocial factors, with the financial investment commensurate to the importance these factors play in the public health and well-being. The leadership and structure of the nation’s research agency needs to broaden beyond biomedical research and encompass the full breadth of health-related human experience.
Centers for Disease Control and Prevention. Chronic Disease Fact Sheets. National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). 2021. https://www.cdc.gov/chronicdisease/resources/publications/fact-sheets.htm
Kelly JD, Bravata DM, Bent S, et al. Association of Social and Behavioral Risk Factors With Mortality Among US Veterans With COVID-19. JAMA Netw Open. 2021;4(6):e2113031. doi:10.1001/jamanetworkopen.2021.13031
Khera, A. V., Emdin, C. A., Drake, I., Natarajan, P., Bick, A. G., Cook, N. R., Chasman, D. I., Baber, U., Mehran, R., Rader, D. J., Fuster, V., Boerwinkle, E., Melander, O., Orho-Melander, M., Ridker, P. M., & Kathiresan, S. (2016). Genetic Risk, Adherence to a Healthy Lifestyle, and Coronary Disease. The New England journal of medicine, 375(24), 2349–2358. https://doi.org/10.1056/NEJMoa1605086
Mendoza-Jiménez M-J, Hannemann T-V, Atzendorf J. Behavioral Risk Factors and Adherence to Preventive Measures: Evidence From the Early Stages of the COVID-19 Pandemic. Frontiers in Public Health. 2021;9(679). 10.3389/fpubh.2021.674597
Nyberg ST, Singh-Manoux A, Pentti J, et al. Association of Healthy Lifestyle With Years Lived Without Major Chronic Diseases. JAMA Intern Med. 2020;180(5):760–768. doi:10.1001/jamainternmed.2020.0618
Sagner M, Katz D, Egger G, et al. Lifestyle medicine potential for reversing a world of chronic disease epidemics: from cell to community. International Journal of Clinical Practice. 2014 Nov;68(11):1289-1292. DOI: 10.1111/ijcp.12509. PMID: 25348380.
Weiland, N., & Kolata, G. (2021, October 6, 2021). Francis Collins, Who Guided N.I.H. Through Covid-19 Crisis, Is Exiting. The New York Times, p. 17.
Whelton Paul, K., Carey Robert, M., Aronow Wilbert, S., Casey Donald, E., Collins Karen, J., Dennison Himmelfarb, C., . . . Wright Jackson, T. (2018). 2017 ACC/AHA/AAPA/ABC/ACPM/AGS/APhA/ASH/ASPC/NMA/PCNA Guideline for the Prevention, Detection, Evaluation, and Management of High Blood Pressure in Adults. Journal of the American College of Cardiology, 71(19), e127-e248. doi:10.1016/j.jacc.2017.11.006