More inclusive research practices needed to expand data on people with disabilities
Despite the COVID-19 pandemic sparking more diverse research practices, individuals with disabilities have largely been excluded from such progress, according to a perspective published in The New England Journal of Medicine.
“Disability has historically been viewed as a health outcome — something to solely prevent, treat or cure,” Bonnielin Swenor, PhD, MPH, director of the Johns Hopkins Disability Health Research Center and an associate professor in the Johns Hopkins School of Nursing, told Healio. “However, the disability community recognizes disability as a social construct, an important component of identity, and a demographic characteristic like race, ethnicity or gender. Gaps in disability data reflect the exclusion of the disability community from research.”
In the perspective, Swenor and Jennifer Deal, PhD, MHS, an assistant professor in the Johns Hopkins Bloomberg School of Public Health, called on the NIH to add disability as a necessary demographic for inclusion in research.
Adding this demographic “will require action from the NIH and other federal funding agencies to require researchers to gather disability data from their studies,” Swenor said. “Like data on age, race, ethnicity and gender identity, disability data must be self-reported to reflect the social construct of disability and not as a diagnosis.”
When individuals with disabilities are included in clinical studies, they are often excluded from data collection and analysis, according to the authors.
More than 67 million adults in the U.S. have a disability, Healio previously reported. This accounts for more than 25% of the population, according to Swenor and Deal. The prevalence of disability is expected to increase as a result of COVID-19 and its lingering symptoms.
Moreover, an expansion of disability research is needed to address the intersectionality of disability with health care inequities that impact people who belong to other historically underrepresented groups, the authors noted.
“By collecting and reporting disability data in research studies, we will be better equipped to identify, address and prevent inequalities,” Swenor said.
The NIH declined to provide a comment to Healio about the authors’ request to add disability as a necessary demographic. The agency currently has an Advisory Committee to the Director Working Group on Diversity, Subgroup on Individuals with Disability. However, the group is focused on improving inclusion in the biomedical workforce.
Representation of the disability community should extend to each stage of the research process, including membership on institutional review boards, grant review panels and the researchers and leaders themselves, Deal said.
“Inequities are invisible until we have data to define them,” Swenor said. “While it’s true we’ve seen advancements in increasing diversity in health and medical research, too often disability is not considered a dimension of diversity. This fundamentally hinders our ability to quantify the impact of policies and interventions for everyone in our communities.”
References:
ACD working group on diversity, subgroup on individuals with disabilities. https://acd.od.nih.gov/working-groups/disabilitiessubgroup.html#:~:text=NIH%20established%20the%20Advisory%20Committee,in%20the%20biomedical%20research%20workforce. Published Jan. 15, 2018. Accessed Feb. 4, 2022.
Swenor B, Deal JA. N Engl J Med. 2022;doi:10.1056/NEJMp2115475.