Patient engagement in a Canadian consensus forum for heart donation after circulatory determination of death

PURPOSE: Heart donation and transplantation following circulatory determination of death has yet to be performed in Canada. A consensus forum was held to provide expert guidance to inform policy with a comprehensive patient partner strategy. This paper describes the process used to create fulsome patient partner engagement resulting in mutually beneficial policy development in this complex area. METHODS: A wide-ranging process for involving patient partners in this area included pre-meeting education, in-meeting expert support, full participation and permission to step back if desired, and post-meeting debriefing. Following the meeting, a questionnaire was used to guide a debrief discussion with patient partners and steering committee members who co-authored this paper. RESULTS: Five key themes arose that echoed the sentiments and contributions made by patient partners, including: 1) a strong desire to improve the system, 2) gratitude and honour, 3) expert support and process, 4) simplification of complex concepts, and 5) mutual benefit expressed by patient partners and healthcare professionals. CONCLUSION: Despite the complexity of the content and the emotionally sensitive nature of discussions around deceased organ donation, a well-planned strategy to involve patient partners is important, impactful, and central to the process. This suggests a broad interprofessional audience can engage with properly prepared and supported patient partners to strengthen and focus dialogue and outputs in the development of health policy in the donation and transplant sector. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s12630-020-01808-z) contains supplementary material, which is available to authorized users.