Proceedings From the Reimagining Caregiver Workshop: Addressing Caregiver Requirements for Hematopoietic Cell Transplant.

The NMDP-sponsored, PCORI (Patient Centered Outcomes Research Institute)-funded project, Reimagining Caregiving Together, Engagement to Address Caregiver Requirement Barriers, is a series of workshops aimed to convene and engage a diverse group of stakeholders to promote discussion of challenges and solutions to caregiver requirements and to develop a PCOR/comparative effectiveness research (CER) agenda to generate evidence on alternative post-allogeneic hematopoietic cell transplant (alloHCT) models to improve access to care. This paper reviews the proceedings from the first workshop and provides an overview of the workshop's efforts to begin to address caregiver requirement barriers. The first workshop, "Defining the Problem and Developing Key Messages" was held in-person in Minneapolis, MN, October 3-4, 2024. Discussion focused on caregiver requirements, identifying a vision for safe-post-alloHCT care and barriers to that vision as well as planning for communication and next steps. Pre- and post-surveys were conducted for evaluation. Survey results showed a significant decrease in the perception of the need for a 24/7 caregiver, reflecting the influence of shared discussion, understanding and problem solving. Materials from this workshop and continued engagement between this workshop and the second workshop in May 2025 will be used to develop a comprehensive strategy and research agenda to enable more patients to receive alloHCT who might currently be unable to do so due to caregiver barriers.