Scientific Reasons for Inclusion

Scientific Reasons to Include People with Disabilities in Research

Shirley Moore, PhD, RN, FAAN

According to the National Institute on Disability and Rehabilitation Research, 18.7% of the working-age people in the U.S. (age 15-64 years) live with a disability.

  • The percentages are even higher in some groups, e.g. older persons, persons with diabetes, persons with risk factors for cardiovascular disease.

  • These populations are likely to benefit from general health care research, especially self-management research.

  • Yet this very group who may benefit most from research is often excluded from participating in it.

People with disabilities are profoundly underrepresented in research.

  • Low vision and hearing are often exclusion criteria in research. And few studies of the health effects of physical activity include people with impaired mobility.
  • Many healthcare professionals see disabilities only as end points in research, rather than as facts of life for some persons who may have long lives ahead of them.
  • An estimated 37.2 million (17% of non-institutionalized) adults have trouble hearing.
  • An estimated 21.2 million (9.6%) adults have trouble seeing.
  • We do not know the number of people who are excluded because of their problems hearing or seeing.

Inclusion of people with disabilities in self-management research will:

  • Improve the usefulness of research by using samples representative of the population to which the findings will be applied.
  • Reduce the bias inherent in using non-representative samples.
  • Increase translation of this knowledge by increasing the reach, effectiveness, adoption, and implementation of interventions found to be effective.
  • Accelerate the rate of discovery of knowledge regarding self-management in persons with disabilities.

Sample of a statement to include in a research proposal:

  • Disabilities (e.g. blindness, hearing loss) will be accommodated using the services of the FIND Lab (FullINclusion of persons with Disabilities in Research) located at the SMART Center at Case Western Reserve University.