Data on Researchers’ Self-Reported Disability Status

Ensuring a strong and diverse workforce is a top priority for NIH. To this end, we regularly assess the sex/gender, race, and ethnicity of NIH-supported researchers to better understand the composition of our workforce and participation in our programs. Investigators may self-report their disability status along with these other demographic characteristics on their eRA personal profile. This allows us to learn more about researchers with disabilities in the NIH-supported scientific workforce. Not only is this of interest to NIH, but many in the community have also asked us about this as well. This post presents some of these data.

The Centers for Disease Control and Prevention reported in August 2022 that just over 1 in 4 adults in the United States have some type of disability. When focusing on data on the workforce, the National Science Foundation (NSF) suggests modest growth in the percentage of academic scientists with disabilities over the past two decades, going from 6 percent in 1999 to 9 percent in 2019. NSF data related to the future workforce also show that 9.1 percent of all graduates earning a doctoral degree in 2019 reported having a disability. These gaps between persons with disabilities engaged within the biomedical research workforce compared to the general population, together with our continued interest in strengthening the workforce, contributed to the creation of a Subgroup of the Advisory Committee to the NIH Director (ACD) last year to identify strategies that support individuals with disabilities in biomedicine. The ACD just approved the sub-group’s report presented at the December ACD meeting, which includes several recommendations for NIH to consider.

Before delving into the data here, please note that we began posting information related to disability status on the NIH Data Book this past February. The data available at this time are limited to the number of principal investigators (PIs) with disabilities supported on certain grants in fiscal year (FY) 2021. More data on disability status are under consideration for release via the Data Book.

Let’s now move to the number of PIs with disabilities designated on NIH applications and awards over time (Table 1). The percentage of PIs self-reporting a disability decreased from 2.0 percent in FY 2008 to 1.3 percent in FY 2022. These data dovetail with other previously published data, such as this 2020 PLOS ONE article by Swenor and colleagues, which 1) indicate that the proportion of NIH-supported researchers reporting disabilities is considerably lower than what is generally found in the U.S. population and 2) formed the basis for our analyses presented here.

Table 1. Number of PIs designated on research grant applications and awards self-reporting a disability: FY 2008–2022 

¹ “Withheld Disability” refers to a PI selecting the option “Do not wish to provide” on their profile for disability status

² “Missing Disability” refers to a PI not checking any option on their profile for disability status.

³ Includes PIs designated on research grant awards (e.g. R, P, M, S, K, U (excluding UC6), DP1, DP2, DP3, DP4, DP5, D42, and G12).

Interestingly, Table 1 also showed the number of PIs withholding disability status trended upward from 1,753 in FY 2008 to 2,027 in FY 2022. And even though the amount missing in FY 2022 is less than 2008, there were still 3,953 PIs who opted to not make a selection in the last year alone.

Table 2 focuses on researchers self-reporting a disability, specifically breaking it down by the type of disability. The number of researchers reporting a hearing, mobility/orthopedic, visual, or multiple disabilities trended downward between 2008 and 2022, while the number reporting other disabilities trended upward.

Table 2. Number of PIs designated on research grant applications and awards broken down by disability category: FY 2008 to 2022

⁴ “Multiple disabilities” refers to PIs who have selected more than one disability type.

Table 3 reports the number of researchers who were funded (i.e. designated as PI on an NIH grant) or unfunded (i.e. designated as PI on unsuccessful applications) according to their disability reporting status. Note that this is different from success rate, which is an application (not person) based metric. Similar to table 2, in general, the number of researchers (be they funded or not) reporting a disability went down between 2008 and 2022, while the number of researchers with Other disabilities increased.

Table 3. Number of unfunded and funded PIs: FY 2008 to 2022

Figure 1 presents the funding rate, which is the percentage of PIs with or without a reported disability designated on an NIH award. The data here derive from the numbers presented in Table 3, and show the same general trends.

A strong and diverse biomedical workforce must be as representative as possible, which also means inclusive of researchers with disabilities. Going forward, we will continue assessing and sharing data related to researchers with disabilities and looking forward to considering the recommendations from the ACD subgroup.

Editor’s Note (March 13, 2024): In my December 2022 blog, I incorrectly characterized published work by Bonnielin Swenor, Beatriz Munoz, and Lisa Meeks as a “2020 PNAS paper” when in fact it was published in PLOS ONE (March 3, 2020). I made this correction in the narrative above. Furthermore, I stated that their paper “dovetail[ed]” with our analyses. I am grateful to Drs. Swenor, Munoz, and Meeks for their detailed analyses of researchers with disabilities from 2008-2018, which not only dovetailed but formed the basis of our analyses that demonstrated continuing declines through 2022. I encourage interested readers to read and, as appropriate, cite their important paper.