CWRU Researchers Call for Changing How Research Is Done
Twenty years ago the Americans with Disabilities Act had at its objective to close the health disparities gap for people with disabilities, but differences still exist. Barring people with limiting physical issues from research studies may be to blame, and researchers from Case Western Reserve University’s Frances Payne Bolton School of Nursing want to change that practice.
In a commentary, for Science Translational Medicine, Ann S. Williams and Shirley M. Moore from the nursing school ask researchers to rethink participation criteria that prohibit people with sight, hearing or mobility problems.
They suggest employing universal design methods, adopted by classroom teachers to help mainstream children with disabilities into the regular classroom.
Some of those same tools of audio instructions or large print can accommodate people with disabilities in research.
Without the participation of disabled people, the science is not all there, Williams said.
People with physical and mental challenges have some of the same health problems that affect the general population, but how they differ is not known.
For years, the one-size model of research based on how men suffered disease and weathered treatments was the norm until women and minorities became part of research. New scientific evidence surfaced that health-related differences do exist between men, women and minorities.
Williams suspects it will differ for the 47.5 million disabled, who make up 22% of the American population according to the U. S. Center for Disease Control and Prevention.
For example, Williams asks how much exercise does someone wheel-chair bound need to be healthy?
“When they ask someone how far they walk, in this case the walking can be how far the individual rolled the wheelchair,” she said, adding other changes can also take place.
She also wants to see disability added to race and gender in describing study participants.
This important information is missing from scientific evidence, Williams said.
How major diseases like diabetes and heart problems impact the disabled will not be unknown until they can participate, Williams said.
“We want to change that practice,” said Williams, the study’s lead researcher for the opinion piece, “Universal Design of Research: Inclusion of Persons with Disabilities in Mainstream Biomedical Studies.”
Williams and Moore have started practicing and implementing those changes on the Case Western Reserve campus through the National Institutes of Nursing Research/National Institute of Health-funded center to promote Full INclusion of Persons with Disabilities (FIND Lab).
They are developing technologies and methods to include people with disabilities in research and provide a campus resource for training researchers on ways to adapt their research projects for the disabled.
The researchers are collaborating with the Cleveland Sight Center and Cleveland Haring and Speech Center to make changes.
In late summer, they will open a lending library at Case Western Reserve with those tools that range from inexpensive magnifiers to help people read instructions, sound amplifiers, to more sophisticated computer programs that translate text into sound for the visually impair.
“We have concentrated primarily on people with hearing and sight problems,” Williams said. “In the process, we have found these same technologies are applicable for people who can understand verbal instructions but cannot read.”
“FIND is a way to change the way we do research,” Williams said.