By Emily Leclerc, Waisman Science Writer
At a Glance:
- Individuals with disabilities face significant health disparities, yet remain underrepresented in research. Not including individuals with disabilities, especially in health research on conditions that disproportionately impact them, creates unfair access to treatments and healthcare.
- A new study from the Waisman Center found that researchers are intentionally and unintentionally excluding individuals with disabilities from research studies because they don’t have the skills and knowledge to properly include them, there are no good standards and protocols in place to provide appropriate accommodation to allow for full participation, and because of the continued prevalence of ableist beliefs in research culture.
- Their findings underscore the need for universal study design that has robust procedures, supports, and resources in place to support full participation in research but also a need for more work on breaking down and dismantling the ableist ideas that continue to be pervasive in the research space.
- This study is just the beginning of the conversation. It will take a lot of time and the issue to be addressed from multiple angles to make research more representative of individuals with disabilities. But the work has to start somewhere.
Individuals with disabilities face significant health disparities, yet remain underrepresented in health research. There is substantial evidence that individuals with intellectual and developmental disabilities are systematically excluded from health research, even when it involves a condition that disproportionately impacts them. “We can’t actually solve health disparities unless we include the people who are experiencing them,” says Susan Passmore, assistant professor in the School of Nursing at UW–Madison.
In a new study, Waisman Center investigator Karla Ausderau, professor of kinesiology at UW–Madison and collaborator Passmore dug deeper into why researchers fail to include individuals with disabilities in their work. Their new study, published in the Journal of Empirical Research on Human Research Ethics, found that individuals with intellectual and developmental disabilities are both intentionally and unintentionally excluded because researchers often don’t have the skills and knowledge to allow individuals with disabilities to participate fully, recruitment practices infrequently provide appropriate accommodations for individuals who may need them to participate, and because of the continued prevalence of ableist beliefs in research culture. They hope these results will help start important conversations about how to create research that is more representative of everyone’s experiences.
Current health research, and general population research more broadly, has an overrepresentation of white, middle class, and educated individuals. “And the issue is that that population is actually the one who experiences the fewest poor outcomes,” says Passmore. This issue has garnered a lot of attention over the past decades, particularly when it comes to expanding research to better represent racial and ethnic minorities. But efforts to improve representation of individuals with intellectual and developmental disabilities are not talked about or studied nearly as often. Recent reviews of the scientific literature found that an estimated 72% of health studies excluded individuals with intellectual and developmental disabilities from participation.
If the pool of research participants doesn’t accurately represent the population of people being impacted by different conditions, it leads to unfair treatment and healthcare access.
After interviewing a group of 25 researchers, Ausderau and Passmore found that most of them had not considered trying to bring individuals with intellectual and developmental disabilities into their research. Their reasonings boiled down to several repeated sentiments — the belief that individuals with intellectual and developmental disabilities did not have the capacity or willingness to participate, they didn’t know how to provide appropriate accommodations to allow for full participation, and the lack of the knowledge and skills to properly engage with individuals with intellectual and developmental disabilities.
Encouragingly though, all of the researchers who participated did express a willingness to learn and improve. “Our most important finding is that people didn’t know what to do but they acknowledged their lack of knowledge and skills and wanted to learn,” says Ausderau. “Even during the interview process, many were starting to reflect on some of their processes and how that was potentially applicable to individuals with intellectual and developmental disabilities.”
The belief that individuals with intellectual and developmental disabilities likely don’t have the capacity to provide informed consent and properly participate in research studies is a pervasive and damaging one in research culture. Many of the researchers interviewed by Ausderau and Passmore talked about being unsure if individuals with intellectual and developmental disabilities would be able to truly understand what was going on and provide proper consent. “People are often fearful of what they don’t understand or what they are not familiar with. So, the researchers were worried about people with disabilities having the capacity to participate but we know from our work at the Waisman Center that that’s fully untrue,” says Ausderau. “They have the capacity to be involved as participants, team members, and more — provided they have access to fair accommodations.”
The requirements to participate in research are just as varied as the spectrum of abilities across the disability community. “Different studies need different levels of capacity and someone’s level of capacity is incredibly variable. They’re not all the same, both studies and people, but researchers don’t approach it that way,” says Passmore.
Ausderau and Passmore also found that many of the researchers they interviewed relied on ad hoc, or temporary and improvised, accommodations for participants. Very few researchers reported having formal protocols in place for how they could adjust study materials and procedures for those with disabilities to allow them to participate fully. More often than not, it was up to the study team to figure out how to provide accommodations in an informal and ‘on the fly’ way.
“People talked a little about how they would think about, in an ad hoc way, accommodating people with primary sensory impairments such as being deaf or blind, but they really hadn’t thought about other situations,” says Ausderau. Other than the two researchers interviewed that had worked with individuals with intellectual and developmental disabilities, none of the researchers had any accommodations or protocols designed to support participants with cognitive differences.
Their findings underscore not only the need for universal study design that has robust procedures, supports, and resources in place to support broad and representative research participation but also a need for more work on breaking down and dismantling the ableist ideas that continue to be pervasive in the research space. “A universal design perspective means unbiased access for all people that represent the population, which includes people with intellectual and developmental disabilities,” says Ausderau.
This study is just the beginning of this conversation, an opening to help shed light on why and how individuals with intellectual and developmental disabilities are being excluded from research. The overhaul required to support universal design and the proper representation of all marginalized communities requires in-depth systemic change at almost every level in the research world. That will take time. For now, Ausderau and Passmore are interested in expanding their participant pool to a more varied group of researchers to see if their conclusions remain accurate across a larger group of people. “This study’s researchers were ones that were specifically interested in this topic. So, what would it look like if we had a broader group of researchers? Would we find the same things?” asks Ausderau.
Ausderau and Passmore then want to start looking at this issue from multiple angles to hopefully find a combination of solutions that will be effective at starting to solve it. “Then alongside figuring out some of the necessary systemic change, we want to start working on this from a researcher lens as well in collaboration with people with intellectual and developmental disabilities.” says Ausderau. “We want to create opportunities to get them the knowledge and skills. So, we want to work the problem from the top and the bottom, training researchers as well as looking at systemic change.”