Investigators embracing community feedback model

Implementing community feedback to better inform research design and dissemination is the focus of the Community Engagement Studio model developed by the Meharry-Vanderbilt Community-Engaged Research. UB’s Clinical and Translational Science Institute (CTSI) advocates studio sessions, which use a structured approach to bring researchers and members of the community together, face-to-face or virtually, for a bidirectional conversation around research studies.

Laurene Tumiel-Berhalter, CTSI Community Engagement Core director and director of community translational research in the Department of Family Medicine, Jacobs School of Medicine and Biomedical Sciences, says interest in the sessions is growing dramatically. 

“Those who have used them as a tool are coming back for new projects, which speaks to the value of the information obtained,” she says.

Studios are often proposed during recruitment consultations, and CTSI staff have seen an uptick as word of mouth spreads about their value for investigators. 

“Over time we have established trust with researchers and they are more willing to recommend us as a helpful and reliable resource,” says Ryan James, CTSI community engagement specialist. “We have had researchers provide live demos and testing of new medical devices and aids. Plus, we offer opportunities for breakout rooms between researchers and participants. Studios now offer more versatility in the way researchers can connect with the community to gather information.”

Studio sessions often involve underrepresented individuals from the community, and Tumiel-Berhalter says this feedback is essential to research design.

“We want the participants to reflect the intended community of the research,” she says. “One of the most important planning pieces is to make sure we are getting feedback from all groups. Investigators often aim to involve hard-to-reach populations in their studies, so we purposefully reach out to these communities.” 

Many studio participants are recruited from CTSI’s Buffalo Research Registry, a list of local people who are interested in participating in research. Tumiel-Berhalter says 50% of the registry is comprised of underrepresented individuals. 

Investigators have found that studio feedback can have a major impact on their studies. Rubelisa Oliveira, clinical assistant professor in the Department of Periodontics and Endodontics, School of Dental Medicine, can attest to this. Her studio session involved a study of adolescent dental care in under-resourced areas of the city of Buffalo.

“Community-focused dental research, like mine, can often encounter challenges such as limited resources, difficulty in reaching community members and constraints on time and funding,” Oliveira says. “I hoped that the studio session would foster collaboration and dialogue, providing valuable insights into the needs of diverse populations and tailoring an important tool for my research, a web-based survey on dental care access.”

The session did just that, with participants offering valuable feedback on how to encourage survey participation, improve demographic questions and enhance the overall layout.

“They also shared their own experiences with dental access and the barriers they faced, which led us to add new questions to the survey. Furthermore, they suggested ways to clarify instructions and improve the wording and format of questions for future participants. Something that we had not thought of, and was highlighted by participants, was their own experiences with dental care access while they were adolescents. These experiences can significantly influence the decision-making process of the next generation regarding whether to seek dental care.”

The studio model also proved successful for Wei Sun, associate professor in the Department of Communicative Disorders and Sciences, College of Arts and Sciences. His studio session involved a digital tool for evaluation of hyperacusis, a disorder in which a person has reduced sound tolerance to normal environmental sounds.

“Currently, hyperacusis is evaluated using questionnaires,” he explains. “It is subjective. It is also impossible for people who have communication difficulties to use, such as children with autism. Sometimes parents do not realize their children are sensitive to loud sounds.”

During the session Sun discovered that individuals with hearing loss are sometimes unsure of their specific difficulty, and that this needs to be reflected in a recruitment flyer. 

“Some forms of hearing disorders, including hearing loss, tinnitus and hyperacusis, may be happening at the same time for a person,” he says. “This may be the reason many of our participants did not respond to our original flyers. We are currently modifying our flyers to be more inclusive [of the conditions].” 

“Studio results may be applied beyond the current research study or current grant proposal to inform the researcher’s entire body of work,” notes Grace McKenzie, CTSI community engagement specialist. “Studios have led to articles published in journals, conference presentations and posters, a foundation for a community advisory board and other innovations. [Research teams tell us], you get out of it far more than you put into it.”

Tumiel-Berhalter says researchers have also commented on the time-saving aspect of studios.

“A studio can offer suggestions on recruitment materials and strategies before a researcher gets started. So, you are starting out ahead of the game rather than beginning to recruit, finding out something is not working, and then going back to the drawing board.”

For more information about Community Engagement Studios, visit the CTSI website or contact the CTSI community engagement team at EngageUB@buffalo.edu.