How research funding exacerbates inequality & health disparities
And 3 easy things scholars, editors, and publishers can do about it
Adapted from a talk I delivered October 4, 2023 at the Society for Scholarly Publishing’s 2023 New Directions in Scholarly Publishing Seminar , in the session “The Impact of Externalities: Rethinking Funding, Research Projects, and the Global Body of Knowledge.”
Let’s talk about how research funding exacerbates health disparities and what we can do as individual scholars, editors, and publishers to minimize the perpetuation of this inequity through this system.
The Centers for Disease Control and Prevention (CDC) defines health disparities as “preventable differences in the burden, disease, injury, violence, or in opportunities to achieve optimal health experienced by socially disadvantaged racial, ethnic, and other population groups and communities.”
The chart below illustrates a health disparity that you may be familiar with since it’s been in the news for the last few years. Native Americans have the highest COVID-19 mortality rates in the US, and nearly double the death rate of white Americans (610 versus 311 per 100,000, after adjusting for the age distribution of the populations). Pacific Islander, Black, and Latino populations also have higher age-adjusted mortality rates compared with white and Asian Americans.
It’s important to keep in mind that health disparities are preventable, because they are the result of social, political, and economic structures and systems that affect ethnic and racial minority populations in distinct ways throughout their life course.
Health disparities are not the result of biological differences.
The graphic above, by the Kaiser Family Foundation, illustrates the ways in which social and economic inequalities drive health disparities.
For example, on the left, you see that inequities in economic stability include employment, income, expenses, debt, etc…The inequities in the neighborhood and physical environments in which people live also contribute to health disparities. Running across all of these distinct social and economic inequities are racism and discrimination, both as experienced personally by members of marginalized groups and built into the policies, laws, systems, and structures of society.
The chart above dramatically illustrates the inequities in economic stability in the United States: White families have nearly double the wealth than all other families combined. This is just one example of the statistics that illustrate inequities that contribute to health disparities.
Health disparities, to me, matter because health is a social justice issue.1 There is no justification for someone dying early because of the color of their skin. However, even if you don’t care about social justice, health disparities matter because they hurt YOU, too.2 Research finds that citizens of societies with greater inequities also fare worse overall. And there are economic consequences as well: excess medical care costs and lost productivity of people who are too sick to work.3
A provocative argument
I’d like to make a provocative4 argument: The U.S. National Institutes of Health contributes to health disparities. With an annual budget of more than $45 billion, NIH is the largest single public funder of biomedical and behavioral research in the world. Money equals power, so the work that the NIH funds—the way it spends our money—is a statement about priorities and values.
The mission of the NIH is: “To seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.”
There is a proposed revision5 to the mission statement that might help to focus research on health disparities (proposed changes in bold): “To seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.”
But for now, the current mission statement does not indicate anything about applying basic knowledge or specifying the populations of interest for healing.
With an annual budget of more than $45 billion, the U.S. National Institutes of Health is the largest single public funder of biomedical and behavioral research in the world. Money equals power, so the way the NIH spends our money—is a statement about priorities and values.
The funding model of the NIH contributes to health disparities.
The funding model of the NIH contributes to health disparities. What I mean by this is both process-related (i.e., how the money is awarded) and outcome-related (i.e., who gets the money).
NIH funding goes to rich, white institutions
In Fiscal Year 2022, just 10 institutions accounted for nearly 20% of the $33.34 billion in research funding awarded by NIH. These are top 10 NIH funded institutions:
Johns Hopkins University, $839,852,301
University of California, San Francisco $823,760,533
University of Pittsburgh $675,447,236
Duke University $672,506,294
University of Pennsylvania $668,378,1726
Stanford University $651,714,427
University of Michigan $644,315,349
Leidos Biomedical Research, Inc. $625,102,662
Washington University at St. Louis $620,587,925
Columbia University Health Sciences $616,772,648
These are not places that are well-known for their diverse faculty and student bodies.
NIH peer review privileges these institutions
The mechanism through which grants are ranked privileges these rich institutions, making it easier for them to continue to get a disproportionate share of the funding pie.7 The specific mechanism through which this happens is called “Facilities & Other Resources.” NIH grant applicants have to submit, along with their scientific project explanation, budget details, and protections for human subjects, a description of how their institution’s resources will be leveraged to support this grant. Of course rich institutions are going to have more resources than less-wealthy ones, making it more likely that they will score highly on this metric and increasing their chances to be awarded funding.
NIH funding disproportionately goes to white and male researchers
But it’s not just that the NIH grants disproportionately go to rich, white institutions. NIH funding also disproportionately goes to white researchers. For example, white researchers are nearly TWICE as likely as Black scholars to get major research project funding, a statistic that has held steady for over 20 years.8 Moreover, Black and Asian women are significantly less likely to get major research funding from the NIH.9
Rich, white researchers frame problems and questions in ways that do not necessarily reflect the goals, needs, or perspectives of communities that experience disparities
The patterns in funding described above are problematic for health disparities because such researchers from rich institutions frame problems in ways that do not necessarily reflect the needs, goals, or perspectives of people from marginalized communities.
This misalignment of problems and solutions might happen even when people have the best of intentions. In the spirit of intellectual humility, to illustrate this issue I will describe a failed project that I was involved in, and discuss why it and projects like it are problematic for health equity.
Long story short10 —the intervention was a huge failure and is no longer operating as conceptualized. It turns out that people who live in these food deserts are economically vulnerable, and they did not need nor want this type of food access intervention. The “access” issue was ill-defined from the beginning: The intervention was designed by well-intentioned people who wanted to help solve a problem that they understood from a combination of official data points. These data points include a federal definition of “food access” that did not adequately capture the problematic “access” issues for this particular set of communities, widely publicized rates of diet-related preventable chronic disease in this community, and now-questioned science linking physical access to diet and diet-related disease. The takeaway is that when we don’t engage with the people we claim to want to help, we design interventions that don’t meet the needs of the community, and don’t get used.
Health Equity Tourism
The fact that white scholars are more likely to get funded is true, even when it comes to research on issues of diversity and equity. During the early part of the COVID-19 pandemic, when the disparities became apparent and during a time of racial reckoning with police brutality as another epidemic, much attention was paid to health disparities. And funders found money for “health disparities research,” which incentivized many white scholars to shift their focus accordingly.
Lett and colleagues11 coined the term “Health Equity Tourism”, which they define as “the practice of investigators—without prior experience or commitment to health equity research—parachuting into the field in response to timely and often temporary increases in public interest and resources.” This kind of intellectual tourism is highly problematic for multiple reasons. For example, it leads to problematic conceptualizations of research that do not reflect the realities, interests, or needs of the populations that experience disparities.
Part of the problem that contributes to health equity tourism is that well-funded scholars are smart and have strong grantwriting skills. And they are speaking to an audience of other people like them (i.e., the peer reviewers). So they—with the best of intentions—come up with projects that intuitively appealing. Who can argue with a goal of getting more fresh produce to communities that don’t have grocery stores? But, in the end, when researchers who do not come from the communities they purport to care for, or at minimum, authentically engage with those communities, it is very easy to end up creating solutions to problems that do not exist, like the example of the mobile farmer’s market.
But this is a huge problem for advancing science because these failures paint inaccurate and incomplete understandings: The interventions do not meet the needs of the community for whom they were ostensibly designed, and so they do not get used. But the top-line story is simply: This intervention did not work. And it’s far too easy to get from that to: These people didn’t want to be healthy.
What I am arguing is that a significant danger to the failure of interventions to reduce health disparities that were designed without the input of the target intervention communities is that the failures themselves provide ammunition for those who would claim that “those people” just do not want to be healthy.
It is important to highlight the role of funders in this failure to effectively address disparities: Interventions that are doomed to fail would not be possible if the funders do appropriate due diligence with respect to the intervention team and their approach to designing it. In the example of my own failed food access intervention project, the fact that NO ONE FROM the targeted communities was involved in the design should have been a huge red flag (to me and to the funders).
And yet…many people look great supporting these kinds of “intuitively appealing” projects that ultimately fail. These kinds of interventions are relatively easy to find funding for, and that’s the next argument I will make.
The politicization of science and scientific funding contributes to health disparities.
Finally, the politicization of science and the mercy of scientific funding to political whims contributes to health disparities.
An example of this hit me personally: For several years, I’d been following and participating in the development of an NIH Common Fund transformational research program to advance health communication science and practice.
But in June, just before the funding opportunity announcement was released, the NIH quietly announced that it would be “paused”. The rationale for this pause was the need to “reconsider its scope and aims in the context of the current regulatory and legal landscape around communication platforms.”
But—we can read between the lines here and consider the political pressures relating to the study of misinformation and the politicization of the health information environment, which we have all witnessed over the past several years. In light of that political pressure, I consider this “pause” a serious threat to the integrity of the scientific process, and it is especially worrisome because of the impacts we are seeing of targeted misinformation efforts among populations that experience disparities.
What scholars, editors, & publishers can do to mitigate the effects of funding on scholarship for health equity
To wrap up on a positive, action-oriented note, I want suggest three specific actions you—as individual scholars, editors, and publishers—can take today that can make a difference. These suggestions are inspired by Lett and colleagues’ recommendations to curb health equity tourism.
First, you can actively solicit and support work by scholars from underrepresented groups—no matter what kind of research they do.
Second, you can critically evaluate authorship teams.
And finally, an editor or peer reviewer should be assigned to audit reference lists. Citation is a powerful tool and making sure that intellectual contributions are appropriately credited is important.
Braveman P, Kumanyika S, Fielding J, et al. 2011. Health Disparities and Health Equity: The Issue Is Justice. American Journal of Public Health.
Woodward A, Kawachi I. 2000. Why reduce health inequalities? Journal of Epidemiology & Community Health.
Cooper L. 2021. Why are Health Disparities Everyone’s Problem? Baltimore, MD: Johns Hopkins University Press.
I understand that my frankness is going to make some people angry and defensive. Having spent three years as a postdoctoral fellow at the National Cancer Institute, I know that the vast majority of the people in the institution are committed to equity. Moreover, every single individual I met personally is at the NIH because they believe in the grand mission. The problem is not with individuals, but with the system and structures that are in place. As such, I hope that my critiques here can be interpreted in the spirit in which they are offered: as a call to do better because I care and I believe that the people who can change these systems also care.
Submit your feedback by 11/24/2023: NIH public comments
Full disclosure: I am an alumna.
Katz Y, Matter U. 2017. On the Biomedical Elite: Inequality and Stasis in Scientific Knowledge Production. Berkman Klein Center Research Publication No. 2017-5, Available at SSRN: https://ssrn.com/abstract=3000628 or http://dx.doi.org/10.2139/ssrn.3000628
Wahls WP. 2019. The National Institutes of Health needs to better balance funding distributions among US institutions. Proceedings of the National Academy of Sciences.
Ginther, DK, et al. 2018. Publications as predictors of racial and ethnic differences in NIH research awards. PLoS ONE.
Ginther DK, Schaffer WT, Schnell J, Masimore B, Liu F, Haak LL, Kington R. 2011. Race, Ethnicity, and NIH Research Awards. Science.
Taffe MA, Gilpin MW. 2021. Equity, Diversity and Inclusion: Racial inequity in grant funding from the US National Institutes of Health. eLife.
Ginther DK, Kahn S, Schaffer WT. 2016. Gender, Race/Ethnicity, and National Institutes of Health R01 Research Awards: Is There Evidence of a Double Bind for Women of Color? Academic Medicine.
Nguyen M, Chaudhry SI, Desai MM, Dzirasa K, Cavazos JE, Boatright D. 2023. Gender, Racial, and Ethnic Inequities in Receipt of Multiple National Institutes of Health Research Project Grants. JAMA Network Open.
Ramírez AS, Diaz Rios LK, Valdez Z, Estrada EE, Ruíz A. 2017. Bringing Produce to the People: Implementing a Social Marketing Food Access Intervention in Rural Food Deserts. Journal of Nutrition Education & Behavior.
Lett E, Adekunle D, McMurray P, Asabor EN, Irie W, et al. 2022. Health Equity Tourism: Ravaging the Justice Landscape. Journal of Medical Systems.