Embedding patient priorities into clinical research: Co-developing access, drug navigation, and communication of results within a provincial precision oncology program.

Abstract

e23174 Background: Patient partners in the Personalized Onco-Genomics (POG) Program’s Patient Working Group identified three priorities: equitable access to precision oncology across British Columbia (BC), improved navigation to POG-informed therapies, and patient-centered communication of genomic results. Patients cited travel, limited regional access, and tissue requirements as key barriers, especially in remote areas, and emphasized the need for understandable results, navigation support, and a centralized information hub. This initiative aimed to integrate patient-defined priorities into POG through a patient-engaged implementation model. Methods: POG established a Patient Working Group within program governance. Members completed a priority-setting survey and ranked themes by importance. In 2025, quarterly meetings with patients, clinicians, nurses, analysts, and trainees discussed lived-experience barriers and co-developed next steps with clinical and genomics teams. Discussions focused on access, therapy navigation, communication, and peer support. Patient-identified priorities were refined into action items, tracked through shared documentation, and iteratively reviewed to align patient goals with program implementation. Results: Patient-driven priorities informed several program changes. To reduce geographic inequities, POG expanded participation beyond Vancouver to additional hospital sites in BC. Workflow updates enabling use of archival tissue samples reduced new biopsy and travel needs, benefiting patients in remote and underserved regions. To improve navigation to POG-informed therapies, the Chemotherapy Resource and Information Specialist (CHRIS) role was established to link genomic findings to drug access, support clinicians, and compile real-world cases for funding advocacy. To address communication and education gaps, patients co-developed requirements for accessible, plain-language resources. Implemented tools include automated patient-specific genomic summaries, educational videos, written materials, and an updated POG website featuring multimedia content and curated links, enhancing a centralized public information hub. Conclusions: Embedding a patient working group within POG translated patient-ranked priorities—equitable access, therapy navigation, and communication of genomic results—into measurable changes across sites, workflows, and communication tools. This co-development model shows how patient-driven governance can improve precision oncology, reduce access barriers, and ensure program evolution aligns with patient needs while supporting sustainable, system-level advocacy.