Background: In the United States, >89,000 adolescents and young adults (AYAs) aged 15-39 are diagnosed with cancer annually. This underserved population faces distinctive challenges including low clinical trial accrual, social isolation, financial challenges, and frequent post-traumatic stress. In the team’s previous PCORI Patient Engagement project, Establishing a Patient Centered and Community Based Adolescent & Young Adult Oncology Council (AYAOC), the project team developed and tested strategies to engage AYA stakeholders. The team created an AYAOC, which now provides an enduring interface for patient stakeholders and local researchers to partner on AYA patient-centered outcomes research (PCOR) initiatives. Few, if any, other US cancer centers have AYA councils, a PCOR focus, and established best practices for stakeholder engagement.
Proposed Solution to the Problem: This project will (a) distill the success strategies previously developed by convening the AYAOC in Tacoma, Washington; (b) use video webinars to share these strategies with other AYA programs at cancer centers nationwide; and (c) provide coaching on how to convene an AYAOC.
Objectives: The goal of the project is to increase the number of AYAOCs, expanding the capacity for AYA stakeholder engagement in PCOR and potential comparative effectiveness research (CER) in the United States.
Activities: Six teams of patients and professionals, from promising AYA programs nationwide, will participate. Through a series of interactive video webinars and small group coaching sessions in 2021, the Tacoma team will share best practices for engaging AYA stakeholders for PCOR/CER.
Projected Outcomes and Outputs:
- The team will create teaching tools with expert content based on the team’s local experience, including: a checklist of practical action items to guide the formation of new AYAOCs; concise summaries of best practices for AYA stakeholder engagement; and template meeting agendas for AYAOCs.
- The project staff will convene video webinars and small group coaching sessions for teams of AYA stakeholders from six cancer centers.
- The team will ask each participating institution to convene a local AYAOC and define an AYA-relevant PCOR question based on stakeholder discussions. Ideally, this research question could be addressed as a PCOR project of local AYAOC members.
- The project staff will create and broadly disseminate a teaching video on methods for convening an AYAOC.
Patient and Stakeholder Engagement Plan: The project staff will strongly engage teams of two professional and two patient/caregiver stakeholders from each of the six participating institutions. Each team will collaborate to convene a local AYAOC. New teaching tools and project plans will be vetted by both the Tacoma AYAOC and patient and professional stakeholders from University of California Davis, a participating cancer center. New AYAOCs will be created during the project period, engaging many new AYA stakeholders across the United States. At the conclusion of the project, the project staff will share written best practices and videos, making the strategies for stakeholder engagement available nationwide.
Project Collaborators: Canteen Australia, a world leader in engaging young people touched by cancer, will partner to provide guidance on patient engagement and meeting facilitation techniques. TV4 entertainment will videotape the meeting and create an instructional video. Teen Cancer America will disseminate written materials and videos to AYA oncology programs throughout the United States.