Lourdes Baezconde-Garbanati1, Sandra Suther2, Fern Webb3, John Luque2, Jennifer Tsui1, Carolina Aristizabal4, Brooke Vintilla5, IIeana Guzman6, Eduardo Ibarra7, Rosa Barahona7, Janet Rodriguez8, Pastor Rhonda Holbert1, Mariana C. Stern9
1Keck School of Medicine of USC, Los Angeles, CA,2Florida A&M University, Tallahassee, FL,3University of Florida College of Medicine – Jacksonville, Jacksonville, FL,4USC Norris Comprehensive Cancer Center, Los Angeles, CA,5University of Florida, Gainesville, FL,6University of Florida, Orlando, FL,7University of Southern California, Los Angeles, CA,8USC Norris Comprehensive Cancer Center, Ontario, CA,9Associate Professor, Dept. of Prev. Medicine, USC Norris Comprehensive Cancer Center, Los Angeles, CA
摘要 Abstract
Introduction
Cancer deaths from prostate, lung, and pancreatic cancers remain highest in low-income communities. Survivors and caregivers report that these losses stem not only from disease, but from gaps in communication, trust, access, and culturally relevant information. Their lived experiences are essential for shaping solutions. The CaRE2 Health Center views patients and survivors as partners whose insights ensure scientific progress reaches those most affected.
Procedures
To elevate patient leadership, the CaRE2 Community Outreach Core (CaRE2-COC) uses an engagement model guided by a Florida-California Tri-Institutional Community Advisory Committee (CAC). The 13-member CAC-largely survivors and caregivers-meets quarterly to set priorities and ensure research reflects patient needs. Two training programs, the Community Supporters Academy (CSA) and the 10-week Community Scientists Research Academy (CSRA), build cancer knowledge, research literacy, and advocacy skills so participants can guide research and engage others. They co-create culturally tailored materials distributed at community events and online. A Community Contact Registry tracks willingness to join research, clinical trials, and biospecimen donation; low biospecimen comfort prompted creation of a patient-friendly biorepository video. Partnerships, a podcast, and public events expand opportunities for survivors to share stories and access information.
Results
The CAC ensures patient and survivor perspectives guide CaRE2-COC programs. Since 2019, the CSA has trained 150 ambassadors, and 80 community scientists completed the CSRA with stipends to lead local projects. Pre/post assessments show gains including increased confidence engaging other survivors and improved cancer-screening knowledge. A Cancer Community Conference reached 527 participants, and 5,000 community members received tailored educational materials. Registry data show strong willingness to complete surveys but lower biospecimen comfort, reinforcing education needs. The survivor-story podcast reached 240 listeners, and social media engagement exceeded 28,000 impressions. Events such as an Orlando Magic partnership brought cancer information into trusted community spaces.
Conclusions
CaRE2-COC strengthens patient, survivor, and community leadership by ensuring their experiences guide communication and research priorities. By training trusted influencers and embedding engagement into screening, prevention, and research, CaRE2-COC builds stronger community-academic partnerships, increases research participation, and advances its mission to reduce cancer burdens in California and Florida.