New Consultation Studio Leverages Patient Stories to Shape Science Innovations

October 11, 2019

There’s a new resource available to Duke researchers who are looking to better engage members of the local community and understand patients who might be affected by ongoing research at Duke. The Community Consultation Studio (CCS) is a forum for researchers to directly solicit feedback about their research projects from patients and community members.

The CCS focuses on harnessing the lived experience of patients, providers, community members, and other community stakeholders who contribute to research by providing insights on research protocols, recruitment materials, data collection procedures and instruments, for instance. Duke researchers have already begun working with the CCS. Scott Compton, PhD, Associate Professor in Psychiatry and Behavioral Sciences, used the CCS to inform his research on pediatric anxiety. The team coordinated a town hall where Dr. Compton listened to parents and children discuss how he could refine his protocol to make it more feasible, acceptable, and meaningful for people like them.

“It was incredibly helpful to hear directly from parents and their children, about their concerns and what questions researchers should address next,” he said. “We were also able to present our ideas about a study and get their input about feasibility. I was impressed by how much fun it was to work with the CCS. The whole experience gave me great ideas for where the field needs to move and problems that need to be addressed.”

CSS was modeled after a similar program at Vanderbilt University and developed by the Duke CTSA Community Engaged Research Initiative (CERI). Jennifer Gierisch, PhD, is one of the co-directors of CERI.

“We want this to be a nimble service to help infuse clinical research with [community] stakeholders’ preferences and input,” Dr. Gierisch said. “Engaging stakeholders can make research more feasible and acceptable and help researchers create innovations that are easier to spread and be sustained. Using CCS prior to [research application] submission bolsters the fact that researchers have vetted their ideas with key stakeholders.”

Community reception to the CCS has been positive, too. Participants have expressed how exciting it is to have their stories help shape science and be part of developing innovations that can help people like them.  “Through the CCS, participants are seen as valued advisors and collaborators,” Dr. Gierisch said. “It’s amazing to see how open people are, and to see when their stories lead to an A-ha moment for the investigator.”

To learn more about the CCS, visit the CERI website or request a free consultation