Several members of Yale Pathology recently joined members of the Office of Health Equity Research (OHER) at Yale School of Medicine at a community listening session to understand how to approach people about participating in medical research.
The informal discussion, held over pizza in the community room of Christian Community Action, faith-based non-profit organization, a few blocks from campus, sought input from New Haven residents on how to talk with residents and answer their questions about the use of biospecimens in research including efforts like the Yale medical biorepository service, or biobank. The service provides researchers with access to human biological samples, such as blood, solid tissues, DNA, RNA, and proteins, for research studies.
Yale pathologists, including three residents, joined the listening session to provide information on tissue collection while also working to establish trust and build relationships within the community.
For a biobank to be useful, said Daniel Sarpong, PhD, of OHER, and a Senior Research Scientist (General Medicine) at Yale School of Medicine, it should contain specimens from people of as many different races, ethnicities, and backgrounds as possible, representing a true reflection of the community it is designed to serve.
But he acknowledged that convincing people from every social status and background that donating specimens to a biobank is not only in their best interest, but that it can help people for generations to come, is the challenge researchers face – especially given the distrust some people have for medical and other institutions.
“We thought it was important to get the community perspective and view this from the community lens because we have to do this with the community if we’re going to change the narrative of how we address health equity,” Dr. Sarpong said. “We’re here to listen, learn, and be informed so we can proceed with the community’s perspective.”
Representing Yale Pathology were Angelique Levi, MD, Vice Chair of Pathology and Director of Outreach Services; Andrea Barbieri, MD, Pathology Residency Program Director; Rita Abi-Raad, MD, Associate Residency Program Director; and residents Ernest Franco Hidalgo Cedeno, MD; Ruhani Sardana, MBBS; and Xi Wang, MD, PhD.
Also participating were other team members from OHER, which exists to support health equity research at Yale by providing shared resources and infrastructure, including Community Engagement/Dissemination Coordinator Maurice Williams, BA, MPA, Program Coordinator Layne Alexander Gianakos, OHER Community Program Engagement Coordinator Jose DeJesus, and Sakinah Carter Suttiratana, PhD, MPH, MBA, Associate Research Scientist (General Internal Medicine) and Co-Director of the Yale Cancer Center, Center for Community Engagement and Health Equity.
The concerns community members expressed were not new and those concerns highlighted the work researchers face in gaining the community’s trust. Residents emphasized that people in the community will trust those they see on a regular basis, and suggested first giving people useful health information that addresses their immediate needs and concerns before asking them to donate to a biobank. An example of how researchers and clinicians can easily share their expertise about conditions that are important to the community such as diabetes or high blood pressure or expand the community involvement with “walk with a doc” sessions which can help build relationships between Yale doctors and community residents.
Dr. Sardana, who earned her medical degree in India, and Dr. Hidalgo Cedeno, who earned his in the Dominican Republic, said that as part of their medical education, they were required to go into their communities and provide medical care.
“We had two months of community service where every one of us was given five families and our goal was to talk to them and educate them on diabetes, hypertension, and other risk factors,” Dr. Sardana said.
“There was one person in each town that served as a liaison between that person and the community,” said Dr. Hidalgo Cedeno. “That person would walk around with the students and introduce us to the community. We would go through the community’s demographics and health problems, then we would direct a mandatory research project to the needs of the community.”
They agreed New Haven could benefit from similar programs.
Dr. Sarpong said the session was one of several OHER has planned in the coming weeks.
“We’re also trying to learn what types of questions people might have about research participation,” Dr. Suttiratana said. “This will allow us to come to the next meeting more ready to respond to questions people have. We will keep showing up and listening and trying to improve communication and transparency if we can.”