Engaging Burn Survivors, Their Families, and the Burn Community in Patient-Centered Outcomes Research: A Burn Survivor- and Burn Community Stakeholder-Generated and Prioritized Research Agenda

Abstract

Burn survivors are involved in burn research, but typically in the role of research subject. We believe that the outcomes and impact of burn research can be improved by engaging survivors as collaborators in the planning, implementation, and dissemination of burn research. The goal of this work was to produce the first burn research agenda generated and prioritized by burn survivors and other stakeholders from the burn community. A series of structured focus groups covering 5 topics (Patient and Family Education, Aftercare, Navigating the Healthcare System, Recovery: Physical and Psychosocial, and Barriers to Research) were held with burn survivors and their family members. Specific research questions/topics were identified from the transcripts and prioritized via an anonymous survey of burn survivors, their caregivers, and other stakeholders from the burn community. From these sessions, 37 specific research questions/topics were identified and ranked. In addition, 19 research barriers were identified and ranked. This work presents an innovative approach to burn research through co-production with survivors and other stakeholders. Burn survivors and their caregivers are experts in their lived experiences. By involving them in burn research as collaborators and contributors from the very first steps of research and throughout the continuum of the research planning, conducting projects, and distributing findings, we believe that the research will be both more successful and more impactful. We have taken the first steps in burn research co-production with this novel stakeholder-generated research agenda for the burn community.