Community scientists bring the voice of South Carolina to cancer research

Amber McCoy lights up when talking about MUSC Hollings Cancer Center’s new Community Scientist Program.

“Community input brings a new perspective to cancer research,” said McCoy, a program coordinator on Hollings’ Community Outreach and Engagement (COE) team. “Not only is research served – our communities are, too, because we work hand-in-hand with them.”

Launched earlier this year, the program makes community members an active part of Hollings research teams. The community scientists will collaborate on projects spanning the full research pipeline, from basic laboratory studies through human clinical trials, acting as voices for the experiences, needs and questions of South Carolinians.

For Danielle McFadden, a high school English teacher from Lexington, the motivation to join the program was deeply personal.

“When I was 18, two days after prom, I learned my father had terminal lung cancer,” she said. “He passed away just months later. That experience and watching my mom struggle with smoking made me want to understand cancer better and help others catch it earlier.”

Community scientist Angela Orr was drawn to the program for similar reasons. A cancer survivor herself, she joined to understand what happens behind the scenes of research and to help ensure that patient experiences are not overlooked.

“There are so many questions that don’t get answered,” Orr said. “Not just about treatment but about the mental and emotional shift that comes with a cancer diagnosis.”

Bringing community members into research

A common misconception, McCoy said, is that researchers can simply “go out and get people to join studies” without first building trust or understanding what they need. In reality, studies are more successful when they reflect the lived experiences, concerns and cultural contexts of the communities they serve.

“Researchers speak in terms of receptors and pathways,” McCoy said with a laugh. “Community members are often like, ‘What? Break it down.’ A lot of researchers don’t even realize what they’re missing without community input.”

McFadden echoed that perspective: “As a teacher, I know people shut down when they hear jargon,” she said. “My role is to take something complicated and make it less scary.”

The Community Scientist Program provides a structured way to do that. While many Hollings research teams already seek out community perspectives, the program formalizes the process – allowing input at every phase of a study, from the initial idea to the sharing of results.

“The community scientists help ensure that Hollings’ research is aligned with the needs of the South Carolina population,” emphasized Marvella E. Ford, Ph.D., associate director for community outreach and engagement at Hollings. 

The nine community scientists represent diverse backgrounds, including education, public health, nonprofit leadership, mental health advocacy and cancer survivorship. Hollings recruited intentionally from across the state, including all four South Carolina Department of Public Health regions and rural areas where cancer outcomes are often worse.

“That diversity gives us a wide view of what people experience in different parts of South Carolina,” McCoy said. “It helps make sure our research isn’t happening in a vacuum.”
What the scientists have in common is a background in community involvement and a commitment to improving cancer outcomes.

As built-in sounding boards, they can flag unclear language, identify cultural or logistical barriers and share insights into how different groups might interpret materials. That guidance makes studies more inclusive and culturally relevant, reinforcing Hollings’ commitment to the bi-directional engagement expected of National Cancer Institute-designated cancer centers.

Building a bridge between science and communities

To prepare for the role, the community scientists completed extensive training, covering:

• Cancer types, biology and screening.
• Study design, funding and implementation.
• The role of community engagement in science.
• Equitable study recruitment strategies.
• Grants and funding opportunities.
• How researchers interpret, report and share findings.

For Orr, the training underscored the complexity and rigor behind cancer research.

“It’s eye-opening how much goes into it,” she said. “Now we can ask questions and offer viewpoints that help researchers think about things they might not have considered.”

Leaders from Hollings’ three research programs – Cancer Biology and Immunology (CBI), Developmental Cancer Therapeutics (DCT) and Cancer Prevention and Control (CPC) – then met the community scientists and introduced them to their work.

In November, Hollings held a matching ceremony, pairing each scientist with one of the three research programs based on their interests, background and experience. They will meet at least quarterly with program leaders to advise them on ongoing and upcoming projects and offer feedback at critical decision points.

Matched with the DCT program, McFadden said the training deepened her understanding of cancer and cancer research, as it highlighted nuances in genes, tumors, treatments and more.

Building a partnership between science and community

Ford and McCoy appreciate that the program supports researchers and communities by fostering meaningful two-way relationships.

For researchers, community scientists strengthen the relevance and feasibility of Hollings’ studies by offering insights on everything from how the public may perceive projects, what concerns might limit participation, where language should be simplified and which outreach strategies resonate most.

“By weighing in on all aspects of the research process, the scientists will be the voice for community members in Hollings’ studies, helping researchers to share the results of their studies in plain language and an approachable manner,” Ford said.

For communities, the benefits are equally meaningful. Several scientists are cancer survivors who now have a platform to shape research that could improve care for future patients. Orr said that lived experience adds a perspective that researchers may not have.

Others are active in local health coalitions, churches, advocacy groups and schools, creating natural pathways for information to flow back to the community and countering misinformation that often separates people from science.

“People may not trust scientists, but maybe they’ll trust us – people like them,” McFadden said. “We can meet people where they are and help them understand what research means.”

“When people see everyday folks working alongside scientists, it changes how research feels,” Orr added. “It’s not just scientists in lab coats anymore – and that makes people more willing to listen, ask and engage.”

Even in its early stages, the program is having an impact. A Hollings investigator recently included community scientists in a grant proposal – exactly the kind of collaboration the program aims to foster. As another example, during an initial meeting with the DCT program, McFadden shared her mother’s experience with a brain tumor that shrank before surgery, prompting researchers to ask about a supplement her mother had been taking as a potential avenue for further study.

“It’s really a Hollingswide effort,” Ford said. “It supports our researchers, empowers our communities and helps ensure the work we do truly reflects the people we serve. And that ultimately means better outcomes for South Carolina.”