(P 195) ENHANCING PARTICIPANT ENGAGEMENT IN A NOVEL PATIENT-PARTNERED CANCER GENOMICS RESEARCH EFFORT FOR RARE AND AGGRESSIVE SARCOMAS

Objective:To identify patterns and themes that support participant engagement in patient-partnered cancer genomics research

Methods: Funded by the National Cancer Institute and part of the Patient-Engagement and Cancer Genome Sequencing Network, Count Me In (CMI) launched the Osteosarcoma (OS) and Leiomyosarcoma (LMS) projects, whereby any patient with OS and LMS in the US and Canada can share their health information, tumor samples, and lived experience with cancer researchers. To participate in CMI, participants had to access the CMI website, review and sign electronic consent, indicate the location and sign release of their health information and biospecimens to be shared with CMI, and complete a short survey on their experience with OS and LMS. The Engagement Optimization Unit of CMI was formed to optimize recruitment, retention, and return of results.

We conducted in-depth interviews with CMI participants, including patients (age 12 and older) and caregivers diagnosed or caring for someone diagnosed with either OS or LMS. Participants were purposefully sampled to ensure inclusion of minorities, those with lower educational attainment, and adolescents (age 12-17). Thirty-minute interviews were conducted via Zoom, audiotaped, and transcribed by Dana-Farber Cancer Institute (DFCI) trained research staff. Participants were asked to recount their personal experience engaging with the OS or LMS project. Coding and analysis was conducted by the research team (VV, LW, JWM) using NVivo to highlight themes, patterns, and variations, and identify themes that support participant engagement.

Results:Ten patients, nine caregivers, and six patient advocates were interviewed, with three interviews conducted concurrently with an adolescent patient (age 12-17) and parent. Patients were between the ages of 16 and 68 years (mean age 44), 70% female, 80% white, 40% Hispanic, and hailed from 6 US states and 1 Canadian province.

Seven themes were identified that support participant engagement: (a) motivation, (b) respect, (c) trust, (d) inclusivity, (e) relationship (f) engagement, and (g) empowerment.

Participants were motivated by altruism or service to others, playing a part in scientific progress, and serving as a partner in a novel initiative.

Respect for participants was supported through timeliness in communication or follow-up, an appropriate amount of time and information requested of participants, and an acknowledgement that illness may prevent maximal participation. Trust was supported by ensuring participants felt adequate privacy/confidentiality safeguards were in place and the research process was transparent. Inclusivity was supported by ensuring broad representation and by acknowledging and proactively mitigating technical barriers.

Participants wanted to feel a relationship with, as well as engaged and empowered by, the research team. Of the adolescent (12-17 yo) patients, all reported their parents were more engaged in the research process than they were, which may have limited their personal engagement.

Conclusion: In a novel patient-partnered cancer research effort, several themes were identified to support direct participant engagement in cancer genome research. Research teams can support engagement through proactive actions and behaviors that support motivation, trust, respect, relationships, inclusivity, engagement, and empowerment.