Co-creation of a patient engagement strategy in cancer research funding

BACKGROUND: As research teams, networks, and institutes, and health, medical, and scientific communities begin to build consensus on the benefits of patient engagement in cancer research, research funders are increasingly looking to meaningfully incorporate patient partnership within funding processes and research requirements. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities. METHODS: A team of four patient partners with diverse cancer and personal experiences, and two researchers at different career stages agreed to participate as members of the strategy team. Ten staff members participated in supportive roles and to give context regarding different departments of CCS. The strategy was co-developed in 2021/2022 over a series of 7 workshops using facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was subjected to 3 rounds of validation. RESULTS: The co-creation and validation process resulted in a multi-faceted strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized engagement activities spanning the spectrum of research funding, and an evaluation framework. The experience of co-creating the strategy was captured using the Patient and Public Engagement Evaluation Tool and revealed a positive, supportive experience. CONCLUSIONS: Lessons learned included the value of an emphasis on a co-creation process from day one, the utility of facilitation techniques such as ground rules for dialogue, consensus building and Design Thinking, and the importance (and challenge) of designing for and incorporating equity when drafting the strategy. Future work will include implementation and evaluation of the strategy, as well as an examination of further ways to meaningfully and systematically engage diverse voices in research and research funding. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-023-00501-x.