Background: Burn injuries directly impact nearly 500,000 people in the US every year. Patients are partners with the multidisciplinary burn team throughout recovery and their engagement is critical to their outcomes. However, burn survivors and their families have been absent from discussions regarding the direction of burn research, particularly research that focuses on their quality of life, mental health, and physical well-being after injury.
Proposed Solution to the Problem: The proposed work endeavors to have the greatest impact on future burn research by engaging those experiencing recovery firsthand as equitable partners in research. The team will form a network of patient partners and other stakeholders who will identify and prioritize patient-centered research agendas for PCOR/CER to guide future improvements in healthcare delivery and outcomes for burn survivors.
Aim 1. To form a shared governance structure for the project.
Aim 2. To create a network, the Burn Survivor-Centered Outcomes Research (BSCOR) collaborative, to engage with a community consisting of broad representation of patient partners and stakeholders.
Aim 3. To determine research priorities from the stakeholders’ perspective.
Aim 4. Identify barriers to participation in burn research and develop solutions to reduce these barriers.
Phase 1. Creating the governance structure. Forming both the steering and advisory committees who will meet regularly on a virtual platform.
Phase 2. Creating BSCOR. Along with governance, members will participate in idea sharing and dissemination of information.
Phase 3. Building Knowledge and Identifying Barriers. Fifteen engagement studios with patient partners will be held to determine stakeholders’ thoughts, attitudes, and opinions on a variety of topics; 3 will specifically focus on barriers to participation in research.
Phase 4. Research Prioritization. Steering and advisory committee members will meet and review the data from the engagement studios. Committee members will perform ranking of topics for prioritization. These data will subsequently be presented to BSCOR.
Phase 5. Documentation and Dissemination of Results with a focus on accessibility.
Projected Outcomes and Outputs: The main outcome of this work is to engage burn survivors and other stakeholders as equitable partners in burn research. In doing this, the team will assemble BSCOR, a broad network of well-informed stakeholders and the network will be a source of future collaboration, guidance of research, and dissemination of information, and create a prioritized research agenda for PCOR/CER for the burn community. This will be the first time that burn survivors’ and stakeholders’ priorities and opinions on PCOR/CER needs and specific patient-centered outcomes for burn research have been captured.
Patient and Stakeholder Engagement Plan: The patients and stakeholders are survivors of burn injury, their caregivers and family members, members of their community, members of the multidisciplinary burn team, advocates for survivors of burn injury, burn researchers, and firefighters. The team will leverage existing relationships with these communities as well as issue open calls for participation to engage the stakeholders in this work. The project will adhere to the PCORI engagement principles of reciprocal relationships, co-learning, partnerships, transparency, honesty, and trust to create equitable partnerships and a safe and welcoming environment for idea sharing.
Project Collaborators: The Community Collaboration and Engagement Team (CCET) from the University of Utah is collaborating on this project.