The CTSI has a unique partnership with the Rochester Prevention Research Center (RPRC): National Center for Deaf Health Research (NCDHR). RPRC/NCDHR and CTSI have collaborated in numerous ways, and the affiliation has been tremendously beneficial for the university and the community.
CTSI Stories recently spoke with Steve Barnett, M.D., director of RPRC/NCDHR, about how the partnership has evolved over the years.
Tell us a little about the history of the collaboration.
Tom Pearson was the initial bridge between RPRC/NCDHR and CTSI. He was the founding director of the RPRC/NCDHR, which was established in 2004 to promote health and prevent disease with populations of Deaf sign language users and people with hearing loss through community-based participatory research. Rochester is the ideal home for RPRC/NCDHR — Rochester has large populations of Deaf sign language users and people with hearing loss, and URMC provides care to many deaf people and people with hearing loss, their families and communities. Tom was also part of the founding leadership of the CTSI, established in 2006. Tom looked at CTSI and RPRC/NCDHR and saw synergistic opportunities, and he encouraged collaboration. The relationship between CTSI and RPRC/NCDHR grew from that encouragement.
What types of collaboration have gone on?
RPRC/NCDHR and CTSI have overlapping priorities, such as novel research methods, community and stakeholder engagement, diversity in the scientific workforce, and integrating populations that are under-represented in research. By working together — CTSI, RPRC/NCDHR, and community members — we are able to advance translational research, address disparities and promote population health at a higher level than any of us could do alone. Some examples:
- Novel methods: RPRC/NCDHR researchers and community members work together to develop culturally appropriate and language accessible research methods. One example is our use of the video novella for research informed consent. RPRC/NCDHR, CTSI and community members worked together to successfully compete for an NIH supplement to CTSI to study research informed consent with Deaf adult sign language users. The research is being conducted with the Rochester Deaf community by researchers and staff with RPRC/NCDHR and the URMC Deaf Wellness Center. The use of video novellas for informed consent has applications with other populations.
- Community and stakeholder engagement: RPRC/NCDHR works with community members and other stakeholders at all levels of the research process, from priority setting, through research design and conduct, interpretation of research findings, dissemination, and back to priority setting. RPRC/NCDHR community and stakeholder engagement has been recognized with awards locally and nationally. RPRC/NCDHR worked with CTSI to add Deaf community members to the URMC Community Advisory Council, a stakeholder group that advises CTSI, URMC and the Center for Community Health.
- Workforce diversity: CTSI houses unique NIH-funded research training programs that connect programs at UR (including RPRC/NCDHR) with partners at Rochester Institute of Technology and its National Technical Institute for the Deaf. The goal of these programs is to increase the number of research scientists who are deaf or have hearing loss. The Rochester Bridges Program and the Rochester Partnership are the first two of these programs, and leverage local resources and expertise and national networks to create a national hub of excellence to foster the development of the next generation of research scientists who are deaf or have hearing loss.
- Integrating populations that are under-represented in research: CTSI and RPRC/NCDHR seek to enhance diversity in research participation. Deaf sign language users and people with hearing loss comprise populations that are under-represented in research. CTSI also seeks to expand translational research across the lifespan, including increasing research participation of older adults, and expanding research with children and research that examines adult health outcomes associated with childhood conditions. RPRC/NCDHR engagement with people with hearing loss includes many older adults with acquired hearing loss. Most Deaf adult sign language users have been deaf since birth or early childhood, thus RPRC/NCDHR research with Deaf adult sign language users often examines adult health outcomes of deaf children. Some RPRC/NCDHR research methods, such as video surveys, are being adapted for use in research with young children.
What other ways do CTSI and RPRC/NCDHR work together?
Integrating populations requires environment and culture change, and CTSI works with RPRC/NCDHR to work with deaf, hard-of-hearing and hearing staff, students, faculty and community members to create research, education and patient care environments and cultures that are accessible and inclusive. We work together to raise awareness and change norms through the routine use of sign language interpreter services in CTSI meetings and presentations, and the use of captions in CTSI videos. The Saunders Research Building (SRB), the home of the CTSI and RPRC/NCDHR that opened in 2011, was designed with input from Deaf people and people with hearing loss. The layout and wall color of some SRB meeting rooms and offices are designed to enhance visually oriented communication. Some SRB meetings rooms also have induction loop systems to facilitate communication that includes people who use hearing aids.
CTSI and RPRC/NCDHR collaborate with others to support education related to population health, such as the URMC Preventive Medicine Residency Program. The URMC Preventive Medicine Residency Program is part of the CTSI Population Health pillar and is one venue for CTSI efforts to integrate healthcare and research, through training physicians in public health research and population health. RPRC/NCDHR works closely with the URMC Preventive Medicine Residency program and provides unique opportunities to learn about community engagement, public health research, and health inequities.
Connection to NIH and CDC funding programs and networks create opportunities for CTSI and RPRC/NCDHR to fund collaborative projects. Just as our connection with the NIH CTSA program created an opportunity for funding through CTSI of RPRC/NCDHR research on informed consent methods, our connections with the CDC Prevention Research Centers program [link] created opportunities to fund CTSI research through RPRC/NCDHR, such as funding that established in CTSI the coordinating center for the Global and Territorial Health Research Network.