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 

FY	Number of PIs Not Reporting Disability	Number of PIs Withheld Disability1	Number of PIs Missing Disability2	Number of PIs Reporting Disability	Total Number of PIs3	Percentage Reporting Disability
2008	31,976	1,753	6,242	821	40,792	2.0
2009	34,026	1,831	3,668	798	40,323	2.0
2010	40,908	2,077	2,976	854	46,815	1.8
2011	43,048	2,104	2,857	832	48,841	1.7
2012	43,364	2,056	3,221	804	49,445	1.6
2013	41,295	1,954	4,127	757	48,133	1.6
2014	42,525	1,988	3,951	722	49,186	1.5
2015	42,879	2,030	3,774	679	49,362	1.4
2016	45,122	2,081	3,874	751	51,828	1.4
2017	45,573	2,052	3,887	705	52,217	1.4
2018	46,390	2,133	3,559	734	52,816	1.4
2019	47,622	2,152	3,567	717	54,058	1.3
2020	48,294	2,143	3,815	738	54,990	1.3
2021	50,654	2,156	4,461	751	58,022	1.3
2022	49,075	2,027	3,953	749	55,804	1.3

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

FY	Mobility/Orthopedic	Hearing	Visual	Other	Multiple4
2008	227	278	98	146	72
2009	229	263	95	148	63
2010	242	286	98	163	65
2011	243	248	85	190	66
2012	235	254	91	159	65
2013	228	229	75	167	58
2014	205	228	82	163	44
2015	195	198	86	162	38
2016	194	216	89	196	56
2017	175	223	71	194	42
2018	170	213	80	221	50
2019	176	184	75	240	42
2020	171	194	89	248	36
2021	173	177	87	273	41
2022	167	168	77	291	46

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

FY	Mobility/Orthopedic		Hearing		Visual		Other		Multiple		No Reported Disability
	Unfunded	Funded	Unfunded	Funded	Unfunded	Funded	Unfunded	Funded	Unfunded	Funded	Unfunded	Funded
2008	162	65	193	85	57	41	93	53	58	14	27,820	12,151
2009	158	71	180	83	72	23	103	45	50	13	27,708	11,817
2010	182	60	206	80	65	33	121	42	56	9	33,368	12,593
2011	175	68	200	48	67	18	155	35	58	8	35,834	12,175
2012	183	52	177	77	64	27	123	36	51	14	36,117	12,524
2013	176	52	163	66	63	12	132	35	43	15	35,782	11,594
2014	152	53	162	66	62	20	117	46	37	7	35,287	13,177
2015	136	59	148	50	68	18	116	46	29	9	35,180	13,503
2016	147	47	147	69	66	23	141	55	42	14	36,474	14,602
2017	117	58	160	63	46	25	147	47	31	11	36,801	14,710
2018	116	54	153	60	53	27	162	59	36	14	35,893	16,189
2019	128	48	127	57	55	20	175	65	34	8	36,840	16,500
2020	127	44	138	56	62	27	186	62	27	9	37,404	16,847
2021	129	44	120	57	60	27	206	67	33	8	40,349	16,921
2022	125	42	116	52	54	23	226	65	35	11	37,565	17,433

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.