Giving community members a voice in research planning

The feedback, opinions, concerns and suggestions of members of the community are impacting research planning and study development at UB, thanks to the Community Engagement Studio sessions presented by the Community Engagement Core in UB’s Clinical and Translational Science Institute.

Based on the program developed by the Meharry-Vanderbilt Community-Engaged Research Core, studio sessions connect members of the community with researchers to help plan more impactful studies. This semi-structured approach brings researchers and stakeholders together — face to face or virtually — for a one-time, bidirectional conversation around different aspects of research studies.

The CTSI offers four studio slots per year to researchers, free of charge.

“The studios help us as an institution to show our commitment to conducting research that is influenced by the community and provides researchers with an existing process to gather community feedback,” says Laurene M. Tumiel-Berhalter, director of community translational research, Department of Family Medicine, and director of the Community Engagement Core. “It is not a heavy lift for researchers. Plus, it makes our research more relevant, while acknowledging the unique contributions and experiences of members of the community.”

Rebecca Ashare, associate professor of psychology and an academic co-lead for the 2023 CTSI Community Partnership Development Seed Grant Program, conducted two studio sessions in 2023. One session focused on medical cannabis use in urban communities, while the second focused on medical cannabis use in rural communities.

“We were hoping that the community experts could provide some guidance on the types of questions and topics we might ask in qualitative interviews, and thought these perspectives might differ depending on geography,” Ashare explains. “The studios achieved these aims and more. We learned more in those few hours than we could have ever read in any journal article. They shared their own experiences, had suggestions on how to engage patients, and gave us honest and thoughtful feedback about the types of questions that would be useful.”

Each studio session features a community facilitator, an individual from the represented community who leads the group discussion and adds probing questions.

“It is important for the group to feel comfortable with the facilitator, as if they are talking with someone from their neighborhood or inner circle,” says Grace McKenzie, CTSI community engagement specialist. “The facilitator goes through an orientation before guiding the session, so they are familiar with both the research topic and the questions being asked of the community members.”

“This was a new format for us, and very different from focus groups we’ve done,” Ashare says. “The community facilitators ran the whole studio and we, as the researchers, faded into the background. It gave us an opportunity to really listen, and it centered the voices of the community experts.”

While both sessions focused on cannabis studies, Ashare notes there were surprising differences. “We thought people in rural areas might have more barriers to obtaining cannabis, but that did not appear to be the case. Instead, the difference was in where people obtained cannabis, as well as perceptions of safety from different outlets.”

“One of the most important things we learned was the value in having groups discuss topics like cannabis,” says Ashare. “We had planned to conduct individual qualitative interviews but after hearing how people may feel more comfortable discussing their cannabis use in group formats, we are changing our format to conduct focus groups.”

Sanjay Sethi, professor and chief, Pulmonary, Critical Care and Sleep Medicine, and CTSI associate director, agrees that public input can lead to better study planning. A recent Community Engagement Studio session focused on the WNY Long COVID Registry.

“It was very useful and there were several good suggestions about how to disseminate information about the registry and the recovery center,” says Sethi, assistant vice president for health sciences, Department of Medicine, Jacobs School. “One suggestion we have already implemented is the language level of the website. We have made it simpler based on the recommendations from the studio session.”

With two Community Engagement Studios under her belt, Ashare says she highly recommends the sessions to researchers.

“Without the studios, we would have conducted individual interviews, as originally proposed — and we likely would have missed a lot of valuable information,” she explains. “In addition, the experiences the community experts shared provided insight into the critical issues that are facing patients using cannabis for symptom management. We now have a better idea of the types of questions we should ask and there are several questions we would not have thought to ask without the input from the community experts.”

Researchers can learn more about the Community Engagement Studios by watching a 30-minute Open Research Office video or a five-minute Educational Module video, or by reaching out to the CTSI Community Engagement team at EngageUB@buffalo.edu.