Supporting Informed Surrogate Decision-Making in Deceased Donor Intervention Research: Co-Creating Educational Materials With Families

Deceased donor intervention research aims to improve organ donation and transplantation outcomes, but its feasibility often depends on obtaining valid informed consent from surrogate decision makers during a difficult time for families in the ICU. Consent discussions may be complicated by grief, decisional burden, and the complexity of donor interventions, creating risks to comprehension, trust, and voluntariness. In this letter, we describe a collaborative model for co-creating consent and educational materials with deceased donors' family members developed for a donor intervention trial in Canada. We outline our co-creation process and present five practical lessons learned, emphasizing trust, visual communication, standardization, the supportive role of educational tools, and iterative refinement. Our experience demonstrates that materials developed in partnership with donor families can enhance clarity, relevance, and sensitivity while supporting research coordinators. Our approach offers a scalable framework for improving informed consent processes and facilitating ethically robust donor intervention research.