CTSI seeks input from Buffalo community

Patient ambassadors Kathie Crocker, Pamela Harold and Deborah Hemphill (l to r)

Patient ambassadors Kathie Crocker, Pamela Harold and Deborah Hemphill (l to r)

Published October 17, 2017

People who participate in clinical trials are happier with their health care and have better health outcomes.

That was one of the messages from Timothy F. Murphy, MD, SUNY Distinguished Professor of Medicine and director of UB’s Clinical and Translational Science Institute (CTSI) in his welcome to guests to the event, including representatives from area service providers, patient advocacy groups and church organizations.

About 50 community leaders attended the first-ever “Community and Research: Building Partnerships, Creating Solutions” program and luncheon co-sponsored by the CTSI and Patient Voices Network (PVN) held on September 29.

Kathleen Crocker, PVN Steering Committee member and CTSI Patient Ambassador, provided welcoming remarks and an introduction to the PVN, a community group that partners with the CTSI and health care practices to improve communication and collaboration between the community and the university when it comes to research.

“Community involvement in research is vital as it can build trust, encourage participation among under-represented groups, and enhance the relevance of research findings,” said Laurene Tumiel-Berhalter, PhD, director of the CTSI’s Community Engagement core.

One way volunteers in clinical studies benefit from their participation is through regular contact with medical professionals, said Murphy.

Laura Mangan, coordinator of the Office of the Associate Vice President for Research Advancement, UB OVPRED, moderated a panel of guest speakers provided insight into community-based research and the ethics of research.

Heidi Nieves-McGrath, RN, is research coordinator on a study that’s evaluating innovative new therapies for treating hepatitis c virus (HCV) infection among people with substance use disorders. What began as a screening program, she told the audience, has evolved into a network of treatment clinics at 12 locations across New York State, linked by teleconferencing. Researchers are evaluating the effectiveness of this “telemedicine” approach to traditional treatment plans, and so far results have been promising

Heather Ochs-Balcom, PhD, an associate professor in the Department of Epidemiology and Environmental Health in UB’s School of Public Health and Health Professions, is principal investigator on the “Jewels in Our Genes” study, which looks at how genetics contributes to complex disease with a focus on health disparities. Presenting with her was Veronica Meadows-Ray, a patient advocate, breast cancer survivor and the inspiration for the “Jewels in Our Genes” study.

Ochs-Balcom said that her collaboration with Meadows-Ray had opened her eyes to the importance of addressing the cultural backgrounds and personal concerns of patients when planning research projects and carrying out protocols. So far, by tracking incidence of the disease in African American families that have a history of breast cancer, her study has identified two chromosomes that are potential markers of the disease.

Sarah Reilly, MPH, an Institutional Review Board administrator in the UB Office of Research Compliance, spoke on the ethics of research. She described the regulations and procedures mandated by law that universities must follow to protect patients and continue to receive funding for their research.

Importantly, the event was an opportunity for members of the local community to tell investigators what they want and need from research.  The presentations were followed by table discussions facilitated by Tumiel-Berhalter’s community engagement team and PVN steering committee members, who gathered feedback and will prepare a follow-up report and action plan for all of the attendees.

“People seemed excited to learn about Patient Voices Network and the CTSI and what we are trying to do,” said Pamela Harold, PVN Steering Committee member and CTSI patient ambassador. “It felt good to open the doors to the community and let them know what we do.”

“We received lots of positive feedback about how to move forward, and how UB can work better with the community,” added Tumiel-Berhalter. “As a team, we are excited to keep the momentum going.”

Formed in 2010 with patients from three large urban family practices in Buffalo, Patient Voices Network is a community group that works with health care practices and biomedical investigators to guide research projects and improve approaches to recruitment and disseminating information about research.

The mission of UB’s CTSI is to improve health and reduce health disparities in the Western New York community through the development, testing and sharing of novel approaches to health care. The program is supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under award number UL1TR001412 to the University at Buffalo.

Presentations by the experts were followed by table discussions.

Presentations by the experts were followed by table discussions.