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Courtesy of U.S. Centers for Disease Control and Prevention

Having Braille questionnaires and instructions available for blind research participants are ways to include more people with disabilities in mainstream health research, according to Case Western researcher Ann Williams.

Including disabled critical to health studies, researchers say

by Priscilla Kunamalla
May 11, 2011

The first formal guidelines for a new model called “universal design of research,” to address the underrepresentation of people with disabilities in mainstream health research was proposed Wednesday by researchers at Case Western Reserve University in Cleveland.

“We want to change the way health-care research is done so that people with disabilities are routinely included in studies,” Ann Williams, a researcher and adjunct faculty member at Case Western Reserve University’s Frances Payne Bolton School of Nursing.

Universal design of research, which was described in a commentary published in this week’s Science Translational Medicine, provides researchers with practical guidelines to promote inclusion of people with disabilities in biomedical and psychosocial research as participants.

Williams and colleagues called on researchers to rethink requirements for research participants so that more people, including those with disabilities, can benefit from future health-care interventions.

According to the Centers for Disease Control and Prevention 47.5 million Americans, or 22 percent of the U.S. population, have a disability.

They also have from the same health conditions that affect the general population, such as diabetes and heart disease, but are often excluded as potential research participants because of their disabilities.

If researchers are unable to provide materials to people with low vision or blindness to fill out questionnaires, they may exclude those potential participants from their study without exploring ways to include them, Williams said.

According to Janet Szlyk, president and executive director of The Chicago Lighthouse, a non-profit that serves the city’s blind and visually impaired population, universal design of research is extremely critical.

“It’s so much more compelling when you read a research study and see a wide variety of people who were included as participants,” said Szlyk, an experimental psychologist, who also oversees the center’s Low Vision Clinic, where broad-based research and clinical trials are underway. “Those results could be generalizable to anyone.”

She said there is no lack of enthusiasm among the blind and visually impaired community to take part in research studies.

“Our community is excited about participating in research,” Szlyk said. “They want to be involved and make a difference. Even if it doesn’t help them directly, they want to help others. It’s very positive.”

Williams pointed out that while extensive research has been done relating to specific disabilities themselves, information about general health concerns for people with disabilities is sparse.

“If you’re not sampling from the entire population, you really can’t apply your results to the entire population.” Williams said. “A person in a wheelchair needs to prevent heart disease just as much as a person who can walk.”

By including that person in standard research on exercise as a prevention for heart disease, researchers could begin to build a database on what is needed for that particular aspect of human diversity she said.

According to Williams, researchers have consistently found that when products and environments are designed to be accessible to people with disabilities, those things become easier to use and more convenient for the general population.

For example, curb cuts, which are concrete ramps connecting the surface of a sidewalk with the street, enable people in wheelchairs to move safely in public places.

Curb cuts were a result of the Americans with Disabilities Act in 1990 that made public places accessible to those with disabilities, but the population who are the largest users of curb cuts are healthy people who have no mobility impairment, Williams said.

The general public now regularly uses curb cuts for bicycles, wagons, strollers and rolling luggage.

“If we design research that has enough flexibility to include people with disabilities and is more generalizable, the entire population will benefit,” Williams said. “It has happened in every other area where universal design has been applied.”

At Case Western Reserve University, Williams and her team hope that researchers will begin to include people with disabilities in their studies.

They purchased as easy-to-use amplifiers for the hearing impaired, iPads, for the visually impaired to easily enlarge print, and other equipment.

Those tools will be available for loan to researchers to help them incorporate the new design approach into their studies.

Williams recalls that only a few years ago that health-care research excluded women and minorities from research done on healthy, caucasian men. When they were included as participants, differences in the findings resulted.

“We want it to be just as unacceptable to exclude people with disabilities, as it currently is to exclude women and minorities from research,” Williams said. “We think that differences will emerge because disabilities are a part of human diversity.”