On September 14, 2004, the Centers for Disease Control and Prevention (CDC) announced that the University of Rochester Medical Center (URMC) and its community partners would become a part of an elite group of 37 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. This application 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
- 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 people with hearing loss. Videophones enable communication with the rest of the world.
Prior to the establishment of the NCDHR, Dr. Steven Barnett of the University of Rochester Medical Center (URMC), 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 Rochester residents. This task force was made possible through a cooperative agreement between the CDC and the Association of Teachers of Preventive Medicine. Nearly 25 Deaf and hearing individuals representing various organizations met and produced a list of recommendations.
Several members of the Task Force subsequently joined the Deaf Health Community Committee (DHCC) in January of 2005. The purpose of the DHCC is to connect NCDHR and the local Deaf community, and ensure that Deaf perspectives, values, and priorities are built into the NCDHR research agenda. Susan Demers-McLetchie became the DHCC’s first chair. The DHCC developed its own vision and mission statement as well as written governance guidelines. DHCC representatives serve on the Prevention Research Center’s (PRC) National Community Committee (NCC), which meets annually and ensures that the PRC program remains true to its goals of carrying out community-based participatory research.
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 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 Health 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 American Sign Language
- 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.
Dr. Thomas A. Pearson, Albert D. Kaiser Professor, former Chair of the Community and Preventive Medicine (now known as the Department of Public Health Sciences) and current Senior Associate Dean for Clinical Research at the University of Rochester (UR) School of Medicine and Dentistry, also serves as the Program Director and Principal Investigator for NCDHR.
The National Technical Institute for the Deaf (NTID) at Rochester Institute of Technology (RIT) entered into a close relationship with NCDHR, providing faculty with expertise in technologies for supporting communication with Deaf people. Dr. James DeCaro, former Dean and president of NTID, serves as the Principal Investigator of the subcontract between RIT and the UR.
NCDHR also established an External Advisory Committee (EAC) made up of notable leaders in the national Deaf community. Dr. Alan Hurwitz, current President of Gallaudet University, serves as the chair of the EAC.
NCDHR’s 2004-2009 core research project was to develop a state-of-the-art sign language video-based survey (Deaf Health Survey 2008) that is based upon standard English language health and risk behavior surveys. Similar surveys are routinely conducted across the country with the general population 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 citizens. Telephone surveys and written surveys, however, are inaccessible or inappropriate for Deaf people. Therefore, little or no data are available that describe the health status of Deaf people.
NCDHR’s Deaf Health Survey 2008, in contrast, was designed to be culturally and linguistically accessible to the Deaf community. NCDHR developed and refined new techniques to translate English into American Sign Language (ASL) or English based sign language and to conduct back translations for accuracy. Survey takers have the choices of video in ASL or English-based sign language, to turn captioning on or off, and to choose between different sign language “models" in order to suit their preferences (e.g. race, age, gender).
Over 300 Deaf adults from the Greater Rochester (NY) area took the survey during the summer of 2008. Grant applications to the CDC were due in late September of 2008. The CDC required that in the next five year period, Prevention Research Centers (PRCs) focus on interventions to promote health in their partner communities. During a series of town hall meetings, research findings from the Deaf Health Survey 2008 were shared and ideas were solicited for the new grant cycle. Three community health priorities were identified based on findings. Members of the Deaf community and the DHCC recommended that the next NCDHR 5-year project should focus on research to reduce obesity. The new project, called “Deaf Weight Wise”, involved taking an existing program to help people lose weight and be more active, and adapt it for the Deaf community. The existing program, developed by the University of North Carolina at Chapel Hill PRC, has been shown to be effective there, and NCDHR has adapted it for use with the Rochester Deaf community.
The NCDHR logo, which was created by a local Deaf artist, reflects two key components of the mission of the Center: (1) health and (2) a focus on the culturally Deaf community. This contemporary logo design shows a person signing, with arms extending around, and above the head. The solid circles at the end of this person's arms represents closed fists, indicating the sign for "health". The fact that this person's arms occupies space above them is indicative of enthusiasm and being in good health.