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September 21, 2024Cancer Epidemiology Biomarkers & Prevention0 citations

Abstract B169: Diversifying cancer patient advocate voices to eliminate health disparities

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BSBarbara Segarra-VázquezSSSandi StanfordSSSusanne Schmidt

Key Points

  • A specialized training program increased knowledge scores from 2.9 to 4.0 on a 5-point scale among Latino cancer patient advocates across eleven states.
  • Evaluation of the hybrid curriculum combined four virtual modules with an in-person workshop, delivering advocacy training to fifteen cancer survivors and caregivers.
  • Program completion led all participants to pursue scientific advocate roles and committee seats, which helps eliminate systemic health disparities.

Abstract

Abstract 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.

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Cite This Study

Segarra-Vázquez et al. (2024) studied this question.

synapsesocial.com/papers/68e57c1db6db64358751b4b4https://doi.org/10.1158/1538-7755.disp24-b169
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Abstract B001: Engaging patient advocates in the battle against cancer directly in their communities in culturally and language specific ways2024
  2. 2Abstract B112: Empowering cancer advocates: Evaluating the impact of a comprehensive training program2024
  3. 3Abstract B107: Community scientist research advocacy program: Training our research community2024
  4. 4Abstract B106: Empowering communities: Prostate cancer short training pilot program2024
  5. 5Abstract B114: Confronting cancer: Latino scholars investigate cancer disparities in Latino communities2025