About 1 in 3 North Carolinians have had cancer or know someone who has. The vast reach of North Carolina’s second-leading cause of death underscores the need to raise public awareness of cancer’s signs and symptoms, and to make sure cancer research reflects community needs across the state.
UNC Lineberger’s Community Advisory Board works on both fronts. The 14-member board includes those who have lived with different types of cancer, represent various advocacy groups or communities within North Carolina, or have unique perspectives and expertise. Despite their different backgrounds, they share a common goal: putting patients first in UNC Lineberger’s service to all 100 N.C. counties.
Stephanie Wheeler, PhD, MPH, the Michael S. O’Malley Distinguished Professor of Health Policy and Management and associate director of Community Outreach and Engagement (COE) at UNC Lineberger, works closely with the CAB and appreciates its role in connecting researchers to the real world.
COE staff members Veronica Carlisle, Patty Spears and Jennifer Potter run point on coordinating and communicating with CAB members in support of their work with UNC Lineberger.
CAB involvement
For example, to help shape the cancer center’s research priorities, CAB members and UNC researchers jointly review the Community Health Assets and Needs Assessment (CHANA), a comprehensive resource of statewide data about cancer health needs, risk factors, incidence, mortality and survivorship experiences.
CAB members also incorporate a patient perspective into study designs and protocols, help review and approve grant applications from community organizations, and bring new research ideas from the community to the cancer center.
“CAB members review the data right alongside us and help us think through solutions to improve access to care,” Wheeler said. “They’re not reviewing the science — they’re reflecting on the relevance of the work in terms of impact on cancer in North Carolina. They’re focused on questions like, why does this matter and why is it meaningful for patients and communities?”
CAB members reflect on impact
For Eva May, a marketing professional who pivoted to patient research advocacy and has been part of the CAB since its beginning, research can only be meaningful if it’s reflective of the population. She assisted in the development of and participates in a training initiative that has helped more than 780 researchers learn how to incorporate community engagement into their study designs and protocols.
“Researchers have to think about the people who are going to participate in their studies,” May said. “People’s genetic makeup along with personal and community factors called ‘social determinants of health’ can impact their risk of cancer, their diagnosis and their response to treatment. If you don’t recruit enough people in key population cohorts for your research, you won’t know whether your approach is going to work.”
CAB member Jim Smith, a retired psychiatrist and businessman, began his cancer advocacy journey in 1990 upon learning that North Carolina had the nation’s highest mortality rate for prostate cancer among African Americans. He helped start the NC Minority Prostate Cancer Awareness Action Team to promote cancer screenings, and although screening rates are now identical among Black and white men, the incidence of prostate cancer for Black men is still nearly double compared to white men.
“This is why the research is so critical — there is much more to find out,” he said. “UNC is a state school, and that’s important. The CAB gives Lineberger the opportunity to hear from all kinds of people from all kinds of socioeconomic levels, and to help organizations across North Carolina access resources, researchers and clinical trials. It makes a difference.”
Board members also actively spread the word about the cancer center’s work, communicating within and outside of their community organizations and participating in cancer-focused events. In September, three CAB members were panelists or speakers at the 2025 Cancer Center Community Impact Forum, a national conference of community outreach and engagement offices across the country. UNC was chosen to co-host this year’s conference with Duke and Wake Forest universities.
The CAB facilitates opportunities for researchers to go into the community to participate in town halls and other data-sharing events, and connects with communities that are unique to North Carolina, including its military bases, American Indian tribes, the state’s large Spanish-speaking population, and largely rural areas in both western and eastern North Carolina.
“To be truly patient-centered, cancer research must go beyond geographic, socioeconomic or other categorical differences and focus on the individual,” said CAB member and cancer survivor Matt Jones.
Jones served on the advisory board for UNC Lineberger’s Adolescent and Young Adult (AYA) cancer program before joining the CAB.
“If you think about AYA cancer, the age range is 13-39, a pretty broad age range. I went through cancer at age 34 with a 2-year-old child and a professional life — my challenges were a lot different than a teenager’s,” he said.
“When researchers are putting together studies or grant applications, I try to bring the perspective that it’s not a one-size-fits-all kind of approach.”
For Marian Johnson, successful community engagement requires open communication that goes both ways. Serving on the CAB allows her to raise awareness about UNC Lineberger’s work and to take concerns and perspectives she hears from community members back to Chapel Hill.
“Education is so important when it comes to cancer. People need to understand the signs and symptoms of cancer, because early detection works in almost all cancers — if it’s not diagnosed early, there are real costs to the workforce, to families and to communities,” said Johnson, a former breast cancer researcher and longtime breast cancer advocate with Susan G. Komen.
“The CAB engages the community in the process of trying to understand cancer and in working together toward addressing it. It’s all about collaboration.”