By Erin Jester
No matter how carefully a clinical trial or health care outreach program is planned, the project can’t succeed without the target community buying in.
In the UF Health Cancer Institute’s Office of Community Outreach and Engagement, students and alumni of the College of Public Health and Health Professions are bridging the gap between research and real people.
“A lot of research benefits from having a community perspective,” said Jacqueline De La Cruz, a Master of Public Health alumna and clinical research manager for the Cancer Institute’s Community Participative Research team. “Without it, we’re really missing out on good feedback.”
There can be a disconnect between researchers’ goals and communication style and the populations they’re trying to reach. A way to bring those groups together is called community participative research, where community scientists — people from non-research backgrounds who are briefed on key project points — offer feedback to principal investigators on how to tailor their messages to better reach target populations and achieve better outcomes.
Tapping community expertise
The Cancer Institute’s community scientist program is about 15 years old, De La Cruz said. Since arriving at her current role in 2023, she has served as a study coordinator and liaison between PIs and study teams. She also keeps tabs on community engagement programs at other institutions, with an eye to improving upon UF’s model.
Currently, there are six community scientists affiliated with the Cancer Institute. De La Cruz hopes to expand in the future, eventually creating a registry of community scientists who can receive more training to participate in the research.
One of them, E. Stanley Richardson, is an actor, playwright, producer and Alachua County’s first poet laureate. He was recruited for the program after a performance of “In Splendid Error” at Acrosstown Repertory Theater, in which he played Frederick Douglass.
Richardson lost his father to prostate cancer that was diagnosed at stage 4 despite his regular medical checkups. Years later, the mother of three of Richardson’s children died at age 39 of breast cancer, discovered too late even though she, too, was a believer in preventative care. At the time his father was diagnosed, Richardson later found out, the standard test for prostate cancer had a lower rate of detection in Black men than in white men. In fact, Black men were not included in the research.
These devastating losses shaped the way Richardson thought about health care and made him a community advocate long before he joined the fleet of community scientists in 2017.
Avoiding the ‘helicopter approach’ to research
Antwan Brinson, who earned an M.P.H. from UF and is currently working toward a Ph.D. in Public Health with a concentration in Social and Behavioral Sciences, is the community participative research coordinator, managing the daily operations of a study focusing on cancer-related health disparities, health equity and access to care for underserved communities in the Cancer Institute’s 23-county catchment area.
Brinson works with researchers to ensure their studies are considering the context and unique needs of the communities they serve, such as investigating barriers to health care access and swapping jargon in printed materials for “living-room language.”
In community-engaged research, which Brinson helps coordinate through a platform called Front Door, PIs invite community scientists and members of the Office of Community Outreach and Engagement’s Research Linkages Team to make recommendations about what might be missing or inappropriate for the target audience in a research proposal. They give input on materials that will be distributed to the community, ensuring language is clear and easily understood; help with recruitment and implementation, and engage with research participants to assist with adherence and retention.
The work isn’t just helpful, Brinson said; it’s critical.
Traditionally, researchers can take what he called the “helicopter approach,” dropping into communities, implementing interventions and leaving little continuing impact when the study or outreach initiative is over. If researchers fail to fully engage with community members so they can sustain those interventions, positive outcomes leave with those researchers.
“When you work with communities on those interventions, those outcomes are more present in the communities, and it has a much farther reach than traditional research,” Brinson said.
Fresh ideas for improving cancer screening rates
Community engagement in research is attractive to young researchers like Brinson, who said that when he first heard of the concept, he knew it was what he wanted to pursue in his studies and in his future career. He hopes to establish his own community participative research lab affiliated with a large cancer center someday.
Likewise for Eloise Wein, who completed her M.P.H. in May after about a year with the Office of Community Outreach and Engagement.
Wein was originally working with the College of Education after taking a community-based participative research class with Lindsey King, Ph.D., social and behavioral sciences program director and a clinical associate professor in the PHHP Department of Health Services Research, Management and Policy.
She enjoyed going into elementary schools and interacting with the community she was researching, so when her study ended, she looked for similar work and ended up reaching out to the team at the Cancer Institute.
Working alongside community scientists who provided feedback, Wein redesigned parts of the center’s colorectal cancer screening program as her M.P.H. capstone project.
The office provides free at-home colorectal cancer test kits but was seeing a return rate of between 40% and 50%.
Wein redesigned the kits’ instruction sheet to be more visual and easier to understand and added a QR code linking users to a YouTube video explaining how to use the test. She added to the phone script an explanation of what colorectal cancer is and statistics about how early screening can improve mortality rates.
“This isn’t to scare them or anything, but to increase that sense of urgency, because it is important,” she said. “We don’t want anyone falling through the cracks.”
She hopes the changes will eventually result in at least a 70% return rate.
“Most of the people that are completing it, answering our calls, they’re extremely receptive and proactive with their health,” she said. “They’re always extremely appreciative of what we’re doing.”
Public health training ground
Two other 2025 PHHP grads have supported the program in the last few years.
Isabelle Barbery began volunteering with the Office of Community Outreach and Engagement in 2022, and in May earned her Bachelor of Health Science with a concentration in Public Health.
Emily Palmer is the newest member of the team, working with community members and researchers on a cervical cancer self-collection study. This summer, she received her M.P.H. with a concentration in Social and Behavioral Sciences.
Brinson said several PHHP students have chosen to do their capstone projects with the Office of Community Outreach and Engagement.
For the community scientists, too, the work is rewarding.
Even outside his work with the Cancer Institute, Richardson said he tries to encourage cancer screening and general health awareness in his family and community as often as possible.
Richardson established the Bard & Broadside North Central Poetry Festival, a component of ARTSPEAKSgnv, a nonprofit supporting area poets and artists, and last year decided to incorporate a cancer-awareness slam poetry event called the Swamp-Berry Jam. UF Health Cancer Institute co-sponsored the event. He also serves as a community consultant to the Cancer Institute’s external advisory board, focusing on advocacy in men’s health care.
“Whenever I can, I try to intersect what I’m passionate about: art, poetry, cancer awareness,” he said. “I even write poems about going to get a colonoscopy to try to make it a little more interesting.”