Inclusion of People with Disabilities in Research

October 30, 2023, by Jennifer Bowers, Ph.D., M.P.H. and Rachelle Brick, Ph.D., M.S.P.H., O.T.R./L., Division of Cancer Control and Population Sciences, NCI

Over 61 million American adults—or about 1 in 4—identify as having at least one disability pertaining to hearing, vision, cognition, mobility, self-care, and independent living.¹ Yet, individuals with disabilities are seldom included in cancer research, clinical trials, or health policy.² On September 26, 2023, the National Institute on Minority Health and Health Disparities (NIMHD) “designated people with disabilities as a population with health disparities for research supported by the National Institutes of Health.” 

It has been established that people with disabilities are at higher risk for several cancers and tend to have lower access to cancer screening and guideline-concordant care.² A recent article in Lancet Oncology explains that health disparities are driven by a multitude of factors, such as a lack of accessible health care facilities or equipment, difficulties with transportation, psychological barriers related to ableism (the discrimination and social prejudice against people with disabilities), distrust between the disability and biomedical community, and exclusion from clinical research.²

The exclusion of people with disabilities from clinical trials without appropriate medical or ethical justification³ limits the generalizability of research. A recent analysis of ClinicalTrials.gov data indicates that exclusions for psychiatric, cognitive, intellectual, and visual disabilities may be most common, and justification was provided in only 24% of analyzed exclusions.³ Another review found only 2% of randomized controlled trials clearly included people with intellectual disabilities. The authors of the Health Affairs article concluded that simple accommodations and/or minor procedural modifications could have led to inclusion in at least 70% of examined studies.⁴ Because of limited collection of disability status of trial participants, researchers are unable to quantify the impact of their disability on cancer-related outcomes.²

Suggestions to Increase Inclusion of Individuals with Disabilities in Research

• Understand disability history and confront ableist ideas.
• Collect data on disability status as well as measure related systemic factors that contribute to or are related with disability.
• Include individuals with a disability as members of the research team. They can provide valuable insight on improving accessibility, accommodations, and acceptability of research recruitment, design, and intervention approaches.
• Allow scientists or research staff a safe space to disclose or discuss disabilities.⁵
• Promote workplace flexibilities to accommodate different abilities, such as modifications to work modes and schedules (e.g., remote work) and/or proactive assessment of accommodations (e.g., assistive technology, screen reading software, or workplace modifications). Specific examples can be found in the Employer Assistance and Resource Network on Disability Inclusion: A Toolkit for Establishing and Maintaining Successful Employee Resource Groups. 
• Limit study exclusions for people with disabilities as much as possible; utilize the Institutional Review Board expertise and provide and critically review any justifications for exclusion.³
• Include modifications for improved accessibility for people with disabilities in study procedures³ (e.g., an article published in Nature Medicine encourages allowing people with impaired decisional capacity to enroll using supported decision-making or proxy respondents.⁶)

Resources to Learn More

1. NIH designates people with disabilities as a population with health disparities
2. University of Minnesota Bioethics Grand Rounds webinar: Equitable Inclusion of Persons with Disabilities in Research by Willyanne Decormier Plosky, Dr.P.H.
3. Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard: Accessibility by Design (AbD) Toolkit
4. An Accessible Research Ethics Education Training for Community Research Partners with Developmental Disabilities (webinar recording)
5. Employer Assistance and Resource Network on Disability Inclusion: A Toolkit for Establishing and Maintaining Successful Employee Resource Groups

Acknowledgements

We appreciate valuable feedback from Dr. Theresa Cruz (National Center for Medical Rehabilitation Research), Dr. Lynne Padgett (NIMHD), Dr. Wendy Nelson (NCI), and Dr. Rebecca Ferrer (NCI).

References

1. Okoro CA, Zhao G, Fox JB, et al. Surveillance for health care access and health services use, adults aged 18–64 years—Behavioral Risk Factor Surveillance System, United States, 2014. MMWR Surveill Summ 2017.
2. Iezzoni LI. Cancer detection, diagnosis, and treatment for adults with disabilities. Lancet Oncol 2022.
3. Plosky WD, Ne’eman A, Silverman BC, et al. Excluding people with disabilities from clinical research: Eligibility criteria lack clarity and justification. Health Aff 2022.
4. Feldman MA, Bosett J, Collet C, Burnham-Riosa P. Where are persons with intellectual disabilities in medical research? A survey of published clinical trials. J Intellect Disabil Res 2014.
5. Disabilities and Inclusion. COQUAL. Updated 2023.
6. Silverman, B.C., Ne’eman, A., Strauss, D.H. et al. Supported decision-making can advance clinical research participation for people with disabilities. Nat Med 2022.