We need the first-hand experience of disabled researchers

When providers and researchers are able-bodied while patients are disabled, the chasm in lived experience, motivation and immersion in every last nuance of a condition can often be vast. In medicine, the traditional model for researching disabilities repeats itself again and again: nondisabled researchers conduct their studies ‘on’ disabled people as their subjects. While there may be nothing inherently wrong with this mode of scholarship, it carries limitations that should be acknowledged. The fact is: patients can have different priorities from clinicians. They can see things that clinicians may not recognise because they accrue vital first-person knowledge that comes from living with disability or illness. And they are most certainly stakeholders in the research outcome of their own disease.

Given all this, it makes sense to encourage more active patient voices in clinical research. As co-investigators, patients could offer unique insights into their health conditions and ask penetrating questions about treatments and policies. They could help focus practical attention on the development of more inclusive and effective health and social interventions.

While this all sounds great in theory, is there any evidence that healthcare could do a better job if it harnessed the insights and expertise of patients? Patient-researchers are still a novel idea in academia, but emerging evidence shows they offer insights that enhance clinical knowledge. One study in oncology found that investing in patient co-investigators in the design and conduct of clinical trials yielded a 500-fold return. This was because patients offered recommendations that improved enrolment, adherence and retention of participants.

Mindsets need to change, too. In academia, governing boards, faculty and administrators should become more aware of the needs of disabled students and researchers. Efforts to accommodate and include disabled people, even in what might be perceived as the smallest of ways, could go towards encouraging and sustaining students and scholarship. We also need more cooperation between universities, governments, disability organisations and funders. Many international DEI charters in higher education and research focus on gender and race, but people with disabilities are too often the forgotten, marginalised group treated as irrelevant or unworthy of attention.