A Voice at the Table
HOW MARKEY RESEARCHERS WORK
HAND-IN-HAND WITH COMMUNITIES
A genetic predisposition to cancer is a daunting reality for some families. One family member gets a cancer diagnosis and then others might find out through testing that they’re also at risk.
physician and researcher, connects with
patients and families to ensure they feel
supported.
John A. D’Orazio, MD, PhD, is a pediatric oncologist and researcher at the UK Markey Cancer Center and Kentucky Children’s Hospital. He wanted to find ways to support patients and families through the many surveillance tests and appointments that come with an inherited genetic risk.
A partnership planning grant from Markey’s Community Impact Office (CIO) gave him the seed money to start an advisory council where patients and families could share their experiences. The grant also funded an inaugural symposium for patients and researchers to come together.
“The goal of CIO funding these grants is to build trust in our community around research,” said Caree McAfee, MA, CHES, director of Operations and Evaluation for Community Impact.
Advisory council members shared that emotional and psychological well-being were high priorities, in addition to the latest genetic research advances.
The planning grant turned into a larger CIO Pilot Grant to fund interviews with patients and families. The pilot grant also supported a second symposium in fall 2024.
D’Orazio hopes the community created through the CIO grants will ultimately lead to more support services for patients. “We’ve brought this community together. They are tight knit and they care about each other,” he said. “I don’t know that it makes sense for every scientist to have a community panel, but for this one it was powerful.”
Support for Community-driven Research
Grants like those D’Orazio received are one of many ways the CIO uplifts research that responds to communitydriven needs.
CIO consultation services support Markey researchers in building community partnerships, reaching specific populations, promoting culturally appropriate health education and leveraging data.
“Research will be more effective and more impactful if community members and community voices are involved from the beginning, making sure we’re focusing on the right research questions and finding the best ways to include people in the research,” said Pamela C. Hull, PhD, Markey’s associate director of Population Science and Community Impact.
Sharing easy-to-understand information about research studies with the public can help build and sustain trust in cancer research and enhance community perceptions about the value of research in the fight against cancer. The CIO’s Community Research Dissemination Toolkit enhances the skills and capacity of researchers to communicate effectively with non-scientific audiences.
The toolkit, which has been requested by nearly 50 cancer centers, includes communication strategies, plain language guidelines and a glossary with simple alternatives to complex cancer terms.
TACKLING HEALTH DISPARITIES
THROUGH RESEARCH
Research shows that smoking, obesity and diabetes can all impact your chances of getting cancer and a host of other diseases. Other factors, like where you live, your income level, and your race or ethnicity can also drive negative health outcomes.
UK ASCEND (Achieving Success in Community-Engaged research to elimiNate Disparities) will train a new generation of scientists to work with communities to conduct research and share findings on health inequities. The program is funded by a five-year, $3 million grant from the National Institute on Minority Health and Health Disparities, an institute within the National Institutes of Health.
A team of health equity researchers at UK HealthCare conducts ASCEND. The team includes principal investigators:
Lovoria Williams, PhD, RN, FAAN, professor, College of Nursing, associate director of Cancer Health Equity, Diversity and Inclusion and Sally Humphrey Professor of Cancer Health Equity- Nancy Schoenberg, PhD, Marion Pearsall professor of Behavioral Science in the College of Medicine and member of the Executive Committee for the Markey Prevention and Control Program
- Darwin Conwell, MD, Jack M. Gill chair in Internal Medicine and professor in the Department of Internal Medicine in the College of Medicine
UK ASCEND programming includes a year-long intensive training in professional development and communityengaged research. In the second year, scholars receive funding to conduct a pilot research project applying their learned skills. “ASCEND supports these early career researchers so they can change the landscape for health disparities,” Conwell said. Research will focus on five key areas: cancer, cardiovascular disease, diabetes and obesity, neuroscience, and substance use disorders.
“I’m proud of UK and our stakeholders across the state for really taking health disparities seriously,” Schoenberg said. 39
