Engaging the Young Cancer Community

Researchers and community advisory board members from UTHealth Houston School of Public Health’s Adolescent and Young Adult Scholarship, Training, and Research Lab (AYA STAR Lab) led a general session at CancerCon, a conference dedicated to helping young cancer survivors navigate their experiences and foster community.

Organized by the national nonprofit Stupid Cancer, the event took place in Austin this summer, 2024. It offered critical resources and connections for adolescents and young adults experiencing cancer, as well as caregivers, health care professionals, and researchers serving this community. At CancerCon, AYA STAR Lab researchers and community advisory board members discussed the importance of partnership between researchers and the patient community throughout the research process, from identifying research priorities to disseminating and implementing results.

Associate Professor and AYA STAR Lab founding member Marlyn A. Allicock, PhD, in the Department of Health Promotion and Behavioral Sciences, reflected on the experience. “It makes me recognize the impact of our work,” said Allicock, speaker at the conference. “With something like CancerCon, we are in the same room with those who need our research to succeed, and we have a dialogue with them about the state of science and what we know. To have that engaging conversation is so powerful. It makes our science better.”

Panelists emphasized the importance of engagement to ensure that research is responsive to the needs of the AYA community and that innovations are effective. The AYA STAR Lab researchers also showcased their research during an Education Gallery, which created opportunities for participants and researchers to connect and for participants to learn about cutting-edge research.

Andrea Betts, PhD, Assistant Professor of Health Promotion and Behavioral Sciences, said, “For many young people, cancer is disempowering. Just as they should be establishing their independence, they lose control of their health, social lives, and even their education or work.”  Betts continued, “From a research engagement perspective, we want them to know that their voices and lived experiences matter. They can help make the future better for other young patients like them by participating in research at all levels.” 

Now in its fifth year, the AYA STAR Lab’s collaborative efforts extend to engaging young cancer survivor communities personally and up close.

The AYA STAR Lab researchers regularly collaborate with the Community Advisory Board, which comprises members involved in health care, advocacy efforts, and who have personal experiences with cancer. This partnership with UTHealth Houston researchers plays a crucial role in guiding the direction of their adolescent and young adult cancer research. Additional panelists included Community Advisory Board members Brooklyn Olumba, PharmD; Candice Stinnett, patient advocate; and collaborator Wendy Griffith, MSSW, LCSW-S, AYA Program Director at MD Anderson.

Founding AYA STAR Lab researchers include School of Public Health faculty, Marlyn A. Allicock, PhD MPH; Andrea C. Betts, PhD MPH; Caitlin C. Murphy, PhD MPH; L. Aubree Shay, PhD MSSW; and Sharice Preston, PhD (in memoriam).  

In December, the AYA STAR Lab will present at the 6th AYA Global Cancer Congress.

For more information on UTHealth Houston School of Public Health's AYA STAR Lab, contact [email protected].