A Real World Look at Research
People with impaired sight, hearing and other medical limitations won some protections more than 20 years ago when the Americans with Disabilities Act took aim at discrimination in employment and other areas. In health care, however, those with disabilities get short shrift even today, say Ann Williams, PhD, RN, and her colleague Shirley Moore, PhD, RN, of Case Western Reserve University's Frances Payne Bolton School of Nursing.
One reason for the disparities: Those with disabilities are grossly underrepresented in mainstream health research.
Williams and Moore want to wipe out this bias. "People with disabilities are a normal part of every population," Williams stresses, "and should be included in mainstream clinical research."
An estimated 22 percent of Americans have a disability, and many among these also have diabetes, heart disease, cancer or another common medical condition. But because many studies do not include people with disabilities, research can leave doubt about findings' applicability to this population. Williams's example: "How can we understand the effectiveness of insulin pens for diabetes in those with visual impairments—a population that commonly uses these medical instruments—if we have never studied them in people with low vision?"
To fill in such knowledge chasms, Williams and Moore are devising universal design methods for clinical research. Their NIH-funded FIND Lab has jump-started their inclusion efforts on campus, and the nursing researchers are developing technologies and methods to help other investigators at the university—and beyond—to achieve full inclusion.
In a May 11 commentary in Science Translational Medicine, Williams and Moore encourage others to take steps in this direction. Even simple tools, the researchers point out—audio or large-print instructions so those with vision problems can participate in trials, for example—can be a valuable starting point. With accommodation, Williams says, "I think research will reveal some differences and similarities that we might not expect."