Abstract Body: Introduction: Community engagement seeks to make research and clinical interventions relevant to the lives of the community. Care after out-of-hospital cardiac arrest (OHCA) is complex and generally unavailable at community hospitals. Maine is a rural state where post-OHCA care is centralized and the needs for patients and families after OHCA, especially those from rural communities, are not well defined.
Aim: Describe our experience developing a Patient and Family Advisory Council (PFAC) to identify opportunities to better meet the needs of post-OHCA patients and and families, and design research that prioritizes their concerns.
Methods/Approach: OHCA survivors and their home caregiver were invited to a series of 90-minute participatory meetings with an interdisciplinary team of physicians, nurses, social workers, ethicists, clergy, clinical and basic researchers and coordinators. Prior PFAC meetings were stopped due to COVID-19. This restart included two virtual meetings, and one in-person meeting at a non-hospital location. Each meeting started and ended with grounding exercises, agendas were purposely flexible, and attendees were asked open-ended questions regarding their care and experiences in the hospitals and afterward. Two meetings presented research-in-planning seeking feedback and suggestions. Anonymized notes were taken.
Results: Meetings included 13 OHCA survivors and 6 home caregivers; they valued the peer support and felt less isolated in their experiences. Many hoped sharing their stories would guide research and improve future OHCA care. Several themes expressed by the survivors and their families prompted changes in our PFAC designs (separate meetings for non-survivor families, information regarding actions taken in response to their feedback), clinical approaches (revised educational materials describing post-OHCA challenges, list of out-patient resources, education to their rural primary care teams), and research design issues (importance of rural data, extended antibiotic resistance monitoring times, impact of rib fractures, sleep challenges, family stress making time-pressured research decision).
Conclusions: Patient and family advisory councils are effective for gathering meaningful lived experiences regarding OHCA, are well received by PFAC members, and have the potential to establish shared understanding that informs research design and OHCA clinical care.