Lineberger Excellence in Advocacy Program (LEAP): Implementation and evaluation of a comprehensive patient and community engagement program at the University of North Carolina to improve patient centered research

Introduction: Engagement of advocates in cancer research ensures research is patient centered. However, engagement of advocates has been inconsistent in some cases and lacks equitable representation across cancer types. Some researchers find it challenging to identify advocates to engage in research and advocates feel underutilized and underrepresented. Lineberger Comprehensive Cancer Center (LCCC) has established a comprehensive advocate engagement framework called Lineberger Excellence in Advocacy Program (LEAP). By creating a comprehensive program through the office of Community Outreach and Engagement, LCCC can maintain meaningful and sustainable relationships between community members, patients and researchers. Methods: LEAP began in 2022 and is an umbrella program that centralizes key components necessary to maintain adequate bi-directional involvement between community members, patients, and researchers. LEAP entails recruitment, training, advocate-researcher matching, compensation guidance (pre and post award), and evaluation. A Patient Advocate Learning Portal was developed to support LEAP members. The portal offers on-demand access to training videos (e.g., grant review, plain language), webinars (e.g., ASPIRE program), and supplementary resources, including key articles and websites, to enhance member knowledge and engagement. Advocate-researcher matching is accomplished through a simple process. Researchers submit a LEAP member request form in Qualtrics and a request email is sent to LEAP members. We track requesters, opportunity, time to fill the request, and advocates who volunteer in Excel. We also evaluate meaningful engagement of advocates and researchers through surveys and interviews, respectively. Advocate evaluations are conducted annually using a 31-item survey assessing demographics, activities, perceived value, decision-making, and engagement opportunities. LEAP facilitates recruitment and sustained engagement through an email listserv. Results: LEAP has over 92 members of which 72 identify as 53% white, 27% Black/African American, 4% other and 20% unknown. There have been 86 requests from researchers since 2023. These have resulted in 257 LEAP engagements in research projects among the 92 members. Advocate-researcher matches were not made in 6% of the requests due in part to the specificity of the request (e.g., rare cancers). LEAP evaluations from 2024 and 2025 demonstrated that over 90% of advocates indicated high satisfaction on a 5-point Likert scale with feeling valued, respected and heard. Conclusion: LEAP has increased the engagement of patient and community members in LCCC research, enhanced advocate-researcher satisfaction and improved the alignment of advocates with researchers' specific projects.