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Inclusion of People with Disabilities

People with disabilities should be involved in all aspects of research including funding opportunities, input into the design of the research, serving as Principal Investigators (PI), participating as a research subject, and included when sharing the research findings. 

One in four adults (28.7%) in the U.S. have at least one disability pertaining to hearing, vision, cognition, mobility, self-care, and independent living (U.S. Centers for Disease Control and Prevention [CDC], 2024a). About 1.3 billion people globally have a disability. Many adults with a disability are also part of a minority group in the US: 1 in 4 Black, 1 in 5 white, 1 in 6 Hispanic, 3 in 10 American Indian, and 1 in 10 Asian adults (CDC, 2024b).  People with a disability are more likely to smoke, have obesity, have heart disease, and have diabetes, compared to adults who do not have a disability.  One in four adults with a disability do not have a primary healthcare provider; 1 in 4 have an unmet healthcare need; and 1 in 6 have not had a routine check-up in the past year (CDC, 2024b). Persons with disabilities are not often included in clinical trials, cancer research, or health policy (Lezzoni, 2022).

Despite the facts of this reality, the Belmont Report calls out the respect for persons, beneficence, and justice for everyone.  Following the Northwestern University Institutional Review Board’s (IRB’s) Community-Engaged Research principles means including persons with disabilities in the design and conduct of research.  This can help us understand and reflect the unique challenges and needs that persons with disabilities face. It can help to identify barriers to participation to help ensure research methods are accessible to all. Involving persons with disabilities in all aspects of the research can increase the generalizability of research findings to all, not just persons without disabilities.

The following sections outline a quick guide to ways to support accessibility and equity and identify opportunities to promote the inclusion of people with disabilities in every aspect of research.

Guiding Research Principles:

  • Belmont Report
  • HHS: Protection of Human Subjects, 45 C.F.R. 46
  • FDA: Diversity Action Plans are now required for Phase 3 and later trials.
  • NIH: People with disabilities recently declared to be a population with health disparities

Ways to include persons with disabilities as researchers:

  • Connect researchers with the NIH funding for research on health and health care disparities experienced by people with disabilities.
  • Create infrastructure to support researchers who have a disability, such as making assistive technology available and meeting the needs of these researchers.
  • Include perspectives of people with disabilities when planning and conducting research.  Advertise in avenues popular with the disability community when seeking to hire study team members.  Consider having peer navigators and communication designers that are from the disability community.
  • Incorporate accessibility standards into office documents, websites, forms, databases, electronic business systems, and policies. 

Ways to support the inclusion and equity of persons with disabilities in becoming research participants:

  • Partner with people with disabilities, family caregivers, allies, and their communities as researchers, IRB members, project or study advisors, reviewers, communication designers, and/or patient/peer navigators to reach the intended participants.
  • Recruit people from areas/institutions that provide services to people with disabilities.
  • Consider incorporating inclusivity standards in recruitment guidelines. For example, format communication materials for inclusive reading and mental processing.
  • Review policy, culture, and structure to identify opportunities to promote disability inclusion and address barriers.
  • People with disabilities are more often living in settings of economic disadvantage than people without disabilities. Consider economic accessibility for all.
  • Review your protocol’s eligibility criteria and provide justification that are scientifically or ethically justified, if excluding people with disabilities.
  • Review the Multi-Regional Clinical Trials (MRCT) Center of Brigham and Women’s Hospital of Harvard’s Accessibility by Design (AbD): A Toolkit for Inclusion of People with Disabilities in Clinical Research.
  • Include people with disabilities as members of your research team.
  • List the accessibility features of your study; this communicates that you are leading by example and doing the necessary work to include and treat others with respect and dignity.

Suggestions on interacting with participants who are differently abled:

  • Ask the person with a disability if they would like your assistance; do not assume that help is wanted (even if you think it is needed). Ask them if there is anything that could be augmented to facilitate their ease of use, such as making the print larger on a consent form or participant survey.
  • When communicating with a person with a disability, ensure that effective communication strategies are used, as applicable for the type of communication needs of the individual. For example, for a person that uses a wheelchair, sitting at eye level with the person, and making eye contact facilitates open communication. For a person who cannot see, remember to describe things that you reference, such as what devices will do, etc. 
  • Use people-first language: refer to “a person with a disability” rather than “the disabled person” or “the disabled” or “the handicapped”.
  • Do not make assumptions regarding a person’s abilities or disabilities based on their appearance or use of devices or aids.
  • Ensure spaces are wide enough and there is room for people who use a wheelchair, cane, or walker. Remove obstacles in hallways, waiting areas, parking lots, and other spaces.
  • Know where the closest accessible restrooms, building entrances, elevators, and parking spaces (that can accommodate a lift-chair, wheelchair, scooter, etc.) are located relative to where the research activity will be held.
  • Ensure medical equipment is accessible (e.g., adjustable height tables, lifts, patient-transfer equipment, railings, alternatives for beeps when the person doesn’t hear). Provide age-appropriate storybooks, video, cartoons, or other sensitization options when participants will be interacting with equipment or other situations that may be unfamiliar.
  • For apps and mobile devices, consider if these devices will be accessible for people with limited dexterity or sight, or with limb differences.  Will the devices require access such as the internet? Can they be used by people with visual challenges? Can they be used by people with cognitive and intellectual disabilities? Could you augment the mobile app so that it can include more of these people?
  • Keep in mind that some disabilities are not visible.  For example, people who have attention-deficit/hyperactivity disorder (ADHD), dysgraphia, dyslexia, schizophrenia,  combat post-traumatic stress disorder (PTSD), etc.   
  • Document how people with disabilities are included in the research and maintain their confidentiality.
  • Commit to learning from and with people with disabilities.
  • Ask them for their input.

Improving communication with people who have cognitive, verbal, or other conditions limiting their communication:

  • Learn about and respect their communication methods, including non-verbal cues, writing, gestures, or assistive devices. Pay attention to their facial expressions and demeanor.
  • Ask open-ended questions to check for their understanding of what you communicated and state back to the person what your understanding of what they communicated is.
  • Use clear, simple language, maintain eye contact, actively listen, and allow extra time for responses.
  • Incorporate visual aids, as appropriate. Pictures, gestures, or written prompts can be helpful for understanding and expressing needs.
  • Ask simple questions or offer limited choices to make responses easier, and open-ended questions when you want to check for comprehension. Be patient and allow time for processing and formulating their answer.
  • If you are unsure about the participant’s meaning, rephrase again and repeat what they said to confirm understanding.

References: 

Health Affairs. (n.d.). Disability and health. https://www.healthaffairs.org/disability-and-health

lezzoni, L. I. (2022). Cancer detection, diagnosis, and treatment for adults with disabilities. The Lancet  Oncology, 23(4), e164-e173. https://doi.org/10.1016/S1470-2045(22)00018-3

The Multi-regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard. (n.d.). Accessibility by design (AbD) toolkit. https://mrctcenter.org/diversity-in-clinical-research/tools/abd_toolkit/

National Institutes of Health. (2022, December 1). Advisory committee to the director working group on diversity subgroup on individuals with disabilities. https://acd.od.nih.gov/documents/presentations/12092022_WGD_Disabilities_Subgroup_Report.pdf

National Institutes of Health. (2024, December 24). Division of program coordination, planning, and strategic initiatives. https://dpcpsi.nih.gov/disabilityhealthresearch

National Institutes of Health. (2023, September 26). NIH designates people with disabilities as a population with health disparities. https://www.nih.gov/news-events/news-releases/nih-designates-people-disabilities-population-health-disparities

Northwestern University Accessibility. (n.d.). Digital accessibility. Northwestern University Office of Civil Rights and Title IX Compliance. https://www.northwestern.edu/accessibility/digital-accessibility/

Northwestern University AccessibleNU. (n.d.). What we do. Northwestern University Student Affairs. https://www.northwestern.edu/accessiblenu/about-us/what-we-do.html

Northwestern University Institutional Review Board Office. (n.d.). Community-engaged research. Northwestern University Office for Research. https://irb.northwestern.edu/about/fair/community-engaged-research.html

Northwestern University Libraries. (n.d.). Accessibility services. Northwestern University. https://www.library.northwestern.edu/visit/visitor-privileges/accessibility-services.html

Research Ethics for All (RE4All). (n.d.). Research ethics for all. https://re4all.org/

U.S. Centers for Disease Control and Prevention. (2024a, December 18). Disability impacts all of us infographic. https://www.cdc.gov/disability-and-health/articles-documents/disability-impacts-all-of-us-infographic.html

U.S. Centers for Disease Control and Prevention. (2024b, December 18). Infographic: Adults with disabilities: Ethnicity and race. https://www.cdc.gov/disability-and-health/articles-documents/infographic-adults-with-disabilities-ethnicity-and-race.html

U.S. Department of Health and Human Services. (2023). Language access plan. https://www.hhs.gov/sites/default/files/language-access-plan-2023.pdf