Impacts of patient advisory councils on recovery for sepsis survivors: a case study

Abstract

Introduction Sepsis is a life-threatening condition with significant long-term impacts for survivors and their families. The known benefits of patient engagement have led to increased efforts globally to involve survivors in sepsis research. This study aimed to characterize the experiences of sepsis survivors and their families in patient advisory councils (PACs) for two Canadian sepsis research networks (Action on Sepsis and Sepsis Canada) and explore how PAC involvement supports long-term recovery. Methods This mixed-methods cross-sectional study consisted of a structured survey, ten interviews, and one focus group discussion. All current members of the Sepsis Canada and Action on Sepsis PACs (n = 29) were invited to participate. The results of the survey were analyzed descriptively and used to inform the development of the semi-structured interview guide. Qualitative data were analyzed using a thematic approach. Results Overall, 16 PAC members participated. The majority of participants were women and over 40 years old. Survey scores showed that most participants felt meaningfully engaged, while the qualitative findings highlighted how PACs supported recovery and fostered community connections between survivors, families, and researchers. Major themes included sepsis experience, recovery journey, characteristics of PACs, characteristics of PAC participation, and impacts of PAC involvement. Conclusion Our findings demonstrate that PACs provide critical benefits that extend beyond feeling valued or appreciated for contributing to a specific project. These findings highlight the value of patient-oriented research in shaping evidence-based practices and policies and emphasize the need for trauma-informed approaches and improved post-sepsis care pathways to enhance recovery outcomes.