History

On September 14, 2004, the Centers for Disease Control and Prevention (CDC) announced that the University of Rochester Medical Center and its community partners would become a part of an elite group of 33 Prevention Research Centers for a period of 5 years. The announcement was the culmination of an application process that involved the community and the Medical Center in the writing of a 250-page grant application that described plans to establish baseline measures of health in the deaf community and develop programs to improve health status. The Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR) proceeded to:

  • Deepen its partnership with individuals and organizations from the Deaf community in Rochester and around the nation;
  • Create new techniques for translating English-language public health surveys into a video-based form that is culturally and linguistically appropriate for Deaf people;
  • Develop a computerized survey on a touch-screen computer using the newly-translated survey questions;
  • Conduct the nation’s first-ever sign language-based health risk survey with Deaf communities; and
  • Compare health status in the Deaf community with comparable hearing populations.
  • Design the Center’s offices and meeting rooms to be “Deaf-friendly.” Deep-blue walls with matching curtains maximize visual contrast for sign language communication and minimize glare from windows. Circular seating arrangements provide unhindered sight lines for meetings. Meeting rooms are outfitted with assistive listening devices for hard-of-hearing people. TTYs and videophones enable communication with the rest of the world.

Deaf Health Community Committee

Prior to the establishment of the NCDHR, Dr. Steven Barnett of the University of Rochester, along with the Finger Lakes Health Systems Agency, convened a Deaf Health Task Force in December 2003 to examine health and healthcare issues faced by deaf and hard of hearing Rochesterians. This task force was made possible through by a cooperative agreement between the CDC and the Association of Teachers of Preventive Medicine. Nearly 25 Deaf and hearing individuals representing from various organizations met and produced a list of recommendations.  To read the Task Force Report, go to www.flhsa.org and click “Publications.”

Several members of the Task Force subsequently joined the Deaf Health Community Committee (DHCC) in January 2005. The purpose of the DHCC is to connect the NCDHR and the local Deaf community, and ensure that Deaf perspectives, values and priorities are built into the NCDHR research agenda. Susan Demers became the DHCC’s first chair. The DHCC has developed its own vision and mission statement as well as written governance guidelines, available at www.urmc.rochester.edu/ncdhr. DHCC representatives serve on the Prevention Research Center’s National Community Committee, which meets twice annually and ensures that the Prevention Research Center program remains true to its goal of carrying out community-based participatory research.

Rochester Community Support

The initial grant application would not have been successful without the support of local Deaf Community resources, such as the following:

  • The Deaf Wellness Center, a behavioral health clinic based in the Department of Psychiatry at the University of Rochester Medical Center
  • Lifetime Health, a local outpatient clinic which runs a Deaf Health clinic featuring sign language-fluent providers with nearly 700 Deaf patients
  • The National Technical Institute for the Deaf (NTID) at the Rochester Institute of Technology, the world’s largest technical college for Deaf students
  • Rochester School for the Deaf, a longstanding primary and secondary educational institution for Deaf students in the City of Rochester
  • Deaf Pathways (formerly PAH, MD – Promoting Awareness in Healthcare, Medical and Deaf), a medical humanities program for University of Rochester medical students interested in Deaf culture and ASL
  • Strong Interpreter Services, featuring the most comprehensive sign language interpreting service in the Rochester area and a model provider of such services for the world
  • The Rochester Deaf Community, featuring perhaps the highest concentration of culturally Deaf people in the country.

Leadership

     Dr. Thomas Pearson, Albert D. Kaiser Professor, and at the time of the initial award, Chair of Public Health Sciences and Senior Associate Dean for Clinical Research at the University of Rochester School of Medicine and Dentistry, serves as the Program Director and Principal Investigator for the NCDHR. The National Technical Institute for the Deaf (NTID) at Rochester Institute of Technology entered into a close relationship with NCDHR, providing faculty with expertise in technologies for supporting communication with Deaf people. Dr. James DeCaro, former Dean of NTID, serves as the Principal Investigator of the subcontract between RIT and the UR. The NCDHR established an External Advisory Committee made up of notable leaders in the national Deaf Community. Dr. Alan Hurwitz, current Deaf of NTID, serves as chair of that group.

Deaf Health Survey

NCDHR’s core research project is to develop a state-of-the-art sign language video-based survey (Deaf Health Survey) that is based upon standard English-language health and risk behavior surveys. Similar surveys are routinely conducted across the country by means of telephone calls or written English surveys by state and local health departments, school districts and colleges. These data, along with other health statistics, help public health officials find ways to improve the health of their constituents. But telephone surveys and written surveys are inaccessible to Deaf people or inappropriate for them, so little or no data are available that describe health status for Deaf people. NCDHR’s Deaf Health Survey, in contrast, is designed to be culturally and linguistically accessible to the Deaf community. The NCDHR developed and refined new techniques to translate English into American Sign Language or signed English, and to test the translations for accuracy. Survey takers have a choice of video in American Sign Language or English-based sign language, may choose to turn captioning on or off, and may choose between different sign language “models” to suit their preferences (e.g. African American or white, young or old, male or female).

Over 300 Deaf adults from the Greater Rochester (NY) area took the survey during the summer of 2008.  Over 200 Deaf adults from around the country took the survey at NTID’s 40th Reunion celebration in August 2008. NCDHR researchers have shared findings from the survey with the Deaf community through town hall meetings held in late summer of 2008.  Researchers are writing a number of articles for academic journals to share results with the research community around the world.

Next Steps

The CDC solicited applications for new five-year proposals for prevention research centers in mid-2008; applications were due in late September, 2008. The CDC required that in the next five-year period, prevention research centers focus on interventions to promote health in their partner communities. During a series of town hall meetings to share research findings and solicit ideas for the new grant cycle, members of the Deaf community and DHCC recommended that the 2nd 5-year grant focus on intervention research to reduce obesity. The new project, called ”Deaf Weight-Wise,” involves taking an existing program to help people lose weight and be more active, and adapting it for the Deaf community. The existing program, developed by University of North Carolina at Chapel Hill PRC, has worked well there, and NCDHR plans to find out if it can be adapted to benefit the Deaf community.

In February 2009, the NCDHR was pleased to learn that the CDC has officially awarded it a second 5-year grant. The grant will enable NCDHR to continue its efforts to promote health and prevent disease in the Deaf community through 2014.