URMC, Deaf Community, Study How to Improve Research Participation

Oct. 23, 2012

Documents that explain life-saving medical procedures or how to take part in research can be difficult to understand, but with a $600,000 grant the University of Rochester Medical Center is studying new ways to deliver those messages to deaf patients and consumers.

Robert Pollard Jr., Ph.D., and colleagues have begun a project to evaluate informed-consent procedures for people who primarily use American Sign Language (ASL). Researchers will compare the effectiveness of three informed-consent options: typical English-language forms, a filmed ASL interpretation of the informed-consent documents, and a filmed, scripted scenario in which several deaf people have a conversation about the information contained in the source documents.

Using video as a tool to communicate information to members of the Deaf community is already underway at the National Center for Deaf Health Research (NCDHR) at URMC. However, putting the three options to a scientific test will allow researchers to know what works best. Many deaf people have low English-language reading ability, and therefore are often excluded from medical research and health surveillance.

“We have a lot of experience with people who don’t understand forms,” said Pollard, professor of Psychiatry and director of the URMC Deaf Wellness Center. He also works closely with the NCDHR and has produced numerous ASL films for deaf audiences about health. “Since English literacy is a struggle for many people, we hope that the video-based communication methods we’re studying will have implications for not only the Deaf community but for other language minority groups, and even young children.”

“Deaf ASL users are often excluded from research on health, and it is rare to have research consent information presented in ASL,” added Patrick Graybill, past chair of the Deaf Health Community Committee, a community partner of NCDHR, who also has been involved in many ASL films. “Determining best practices for informed consent with Deaf ASL users is an important step for inclusion and to improve the protection of Deaf research participants.”

Another objective is to measure which communication method best engenders trust and a willingness to engage in clinical research. Principal investigator is Thomas A. Pearson, M.D., M.P.H., Ph.D., the Albert D. Kaiser Professor who directs both the NCDHR and the Clinical and Translational Science Institute (CTSI). Steven Barnett, M.D., associate director of the NCDHR is a co-investigator, along with several members of the University’s Institutional Review Board, which is responsible for protecting research volunteers and educating doctors and scientists.

“We are very grateful for the research grant, and we all agree on the importance of assuring that deaf and hard-of-hearing persons understand what it being asked of them when they enroll in a research study, and to encourage participation in research,” Pearson said. “Our study also has implications for informed consent for clinical care, such as surgeries and vaccinations, and will be done in partnership with the Rochester Deaf community, to provide better patient-centered care in the future.”

Funding for the four-year project was provided to the University of Rochester CTSI (award number 8-UL1-TR000042-07S2), through the National Center for Advancing Translational Sciences and the National Institute for Deafness and Other Communication Disorders, both of the National Institutes of Health.

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