Abstract B169: Diversifying cancer patient advocate voices to eliminate health disparities
Authors: Segarra-Vazquez Barbara , Stanford Sandi , Schmidt Susanne 
Published: September 2024

Cancer patient advocates have become key members in clinical research teams and participating in decision committees at FDA, NCI, ASCO, among others. There is a low number of Latino patient advocates actively participating in the above roles lacking opportunities to share lived experiences and challenges of their communities. Being able to sit at the table where advocates can share key issues and possible solutions can help eliminate health disparities. Based on the need to increase Latinos participation as research advocates, a training program was developed. The Latino cancer patient advocate training program was design to increase knowledge and develop a community of diverse individuals who can seek opportunities to participate in research teams and decision-making committees. The training program included 15 individuals and 4 mentors who were cancer patients, survivors and caregivers and were Latinos or from Latino descent. The training included four virtual sessions, one in-person session, and attending the conference advancing the science of cancer in Latinos. Those chosen to participate received a full scholarship. The dissemination process through emails and social media included a flyer with the requirements, inclusion criteria, and a link to the application form. A total of 34 people applied, 20 were interviewed, and 15 were selected. The participants were from eleven different states and represented different types of cancer. A based questionnaire before the training, one after the training was completed by the participants. A questionnaire comparing their knowledge before and after two virtual sessions and the in-person training was completed by 93.3% participants. Self-rated knowledge scores ranged from 1 (not knowledgeable at all) to 5 (extremely knowledgeable). The average knowledge score across all questions was 2.9 (somewhat knowledgeable) before the training and 4.0 (moderately knowledgeable) after participating in the training. Participants indicated having the most knowledge about “Resources for your cancer type” (average score: 3.6 before and 4.2 after) and “Patient Advocates” (average score: 3.4 before and 4.1 after) and the least knowledge about “Opportunities and Scholarships available for Advocates” (average score: 2.1 before and 3.8 after), which had the largest increase in knowledge. In terms of satisfaction with the overall training program, all participants were very satisfied (85.7%) or satisfied (14.3%). Further, 71.4% of participants strongly agreed and 28.6% of participants agreed that they were interested in becoming a scientific/research advocate because of their participation in the training. Other outcomes after the training include participants being invited to be DoD reviewers, panelists in conferences, participation in important committees. Furthermore, participants communicate weekly with each other sharing opportunities and information. This training provided knowledge and the opportunity to feel represented as Latino patient advocate diversifying the voices of advocates.

Citation Format: Barbara Segarra-Vazquez, Sandi Stanford, Susanne Schmidt. Diversifying cancer patient advocate voices to eliminate health disparities [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B169.