Co-design in action: lessons learned from transplant patient and family engagement in an integrated knowledge translation strategy during the COVID-19 pandemic

BACKGROUND: The COVID-19 pandemic significantly impacted immunocompromised individuals, particularly transplant recipients. Despite their vulnerability, national- and international-level research often lacks direct input from this community. In response, the Canadian Donation and Transplantation Research Program (CDTRP) implemented an integrated knowledge translation (iKT) strategy that involved patient, family, and donor (PFD) partners as co-leads and decision makers throughout the research process. METHODS: Beginning in 2022, CDTRP adapted a co-engagement model to identify research priorities and inform study design, conduct, and knowledge mobilization related to COVID-19 issues for transplant recipients. Diverse stakeholders, including researchers, clinicians, policymakers, trainees, transplant-focused organizations, and PFD partners, collectively co-developed the TREAT-COVID research project. In 2022-2023 CDTRP hosted a series of four national forums that were co-designed and co-facilitated by PFD co-leads, enabling shared decision making and iterative refinement of research priorities and strategies. This paper provides an overview of the iKT strategy implemented, including objectives, engagement processes, outputs, resulting study adaptations, and lessons learned. RESULTS: Each forum generated new insights and actionable changes. Forum 1 identified research priorities, including clinical therapeutics, psychosocial needs, quality of life, economic burden, and recovery-related supports. Forum 2 emphasized mental health and support for transplant recipients and their caregivers. Forum 3 identified the distinct but complementary priorities of transplant recipients and their caregivers, such as clinical care and mental wellness, respectively. Forum 4 addressed barriers to recruiting study participants and refined communication strategies. These forums collectively shaped the TREAT-COVID research project by informing study priorities, data collection tools, recruitment strategies, and knowledge mobilization. CONCLUSIONS: This paper details the iKT strategy implemented by the CDTRP to engage diverse stakeholders in COVID-19-related research for transplant communities. Meaningful and structured patient and family involvement in national health research during a public health emergency was prioritized. By involving patient and family partners in governance, facilitation, study refinement, recruitment, and dissemination, CDTRP advanced a collaborative and equity-driven iKT model. The paper contributes an operational example of national-scale patient and family co-leadership in time-sensitive research.