Rochester launches first health survey of deaf population

This summer, researchers in the Rochester, N.Y., region are conducting the nation's first survey to measure the basic health status of deaf people and their knowledge of health issues.

Adults age 18 and older are invited to take the confidential Deaf Health Survey, which is a sign language accessible version of the Center for Disease Control and Prevention's (CDC) Behavioral Risk Factor Surveillance System (BRFSS), a telephone survey known as the world's largest, ongoing health-tracking system. The BRFSS survey is administered annually to thousands of hearing persons in the United States.

The University of Rochester Medical Center, along with many community partners, is conducting the research with the goal of working with deaf people to prevent disease and improve overall health. The survey is expected to become a model across the United States for surveillance of health issues of deaf adults and other non-English language groups.

The survey is available on a kiosk computer, using a touch-screen system, at a URMC satellite office in Corporate Woods Office Park in Rochester, and through local clubs and community groups. Researchers are seeking a minimum of 300 participants.

Individuals who would like more information can contact the National Center for Deaf Health Research (NCDHR) through email, http://www.urmc.rochester.edu/ncdhr/deafcommunity.html; videophone, (585) 276-2122; or telephone (585) 758-7804 TTY (voice callers can dial 711 for telephone relay).

"Up to the present, it has not been possible for deaf individuals to provide vitally important information in health surveys via telephone. The Deaf Health Survey helps us to identify, for the first time, important health issues in our deaf community," said Thomas A. Pearson, M.D., Ph.D., M.P.H., director of the NCDHR at the University of Rochester, and senior associate dean for clinical research. "We will use these data to make sure that public health resources are appropriately directed to improve health among deaf people and their families."

Feedback from early survey respondents has been positive. Researchers across the country who have listened to presentations from the Rochester group are impressed with the level of detail and collaboration that went into developing the survey.

"Collaboration has been essential at every stage of the process," said Julia Aggas, M.S., chair of the NCDHR deaf health community committee and representative to the national community committee of the CDC Prevention Research Center Program. "From choosing research topics to designing survey features, to translating and recruiting people to take the survey, everyone has worked together to make the Deaf Health Survey the best possible way to collect health information from people who use sign language. We look forward to continued collaboration when we receive the survey results, and to developing health interventions with the deaf community."

Planning for the health assessment started in 2003, followed by a CDC award to the University to build the health surveillance program.

The CDC selected Rochester for this historic initiative, known as the Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR), in part because of the high concentration of deaf people in the area. Although it is not known exactly how many deaf residents live in the region, it is believed that 10,000 to 15,000 people here use sign language to communicate. Researchers and community members hope to get a better population estimate through the surveillance process.

Designing the survey required a careful, collaborative effort by many NCDHR teams, which included faculty from the National Technical Institute for the Deaf (NTID) of the Rochester Institute of Technology, and translation groups comprised of deaf and hearing members fluent in sign language and English.

The survey takes about 40 minutes to complete. Respondents can choose from six sign-language models, and can use a built-in video dictionary that defines, in sign language, medical terms such as diabetes and cholesterol.

Many other states have shown interest in adopting the University of Rochester deaf health assessment. The CDC is also updating its BRFSS tracking system and may employ some of the techniques developed by Rochester researchers to make their survey more appealing to diverse populations.