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.