Background: Injury is the leading cause of death for all persons aged 1 to 44 and a major cause of long-term disability. The most effective strategies to improve trauma care require a partnership between researchers and the injured patient and family. Despite longstanding relationships with stakeholders, the trauma research community has not systematically engaged patients and caregivers in conducting patient-centered outcomes and comparative clinical effectiveness research (PCOR/CER).

Proposed Solution to the Problem: An integrated partnership with trauma’s most vulnerable populations will inform the project team’s understanding of participants’ attitudes regarding participation in trauma research. The team will collect input from patients who may benefit from trauma CER, ensuring outcome measures and research questions are meaningful, respectful, and relevant to the injured patient.

Objectives:

• Establish stakeholder Injury Research Engagement Panel (I-REP) to partner in PCOR/CER from conception to dissemination
• Develop emergency-setting-informed consent strategies and methods for increasing follow-up engagement
• Conduct reciprocal education between patients and researchers

Activities:

• Develop focus group (FG) interview guides to elicit reflection on PCOR/CER topics of concern; conduct virtual FGs and Delphi surveys
• Identify patients’ and caregivers’ preferred methods for  PCOR/CER engagement, including informed consent approaches and the collection of long-term outcomes
• Formalize and establish a long-term, sustainable process to engage the Injury Research Engagement Panel (I-REP) in research
• Provide ongoing education to share strategies with researchers that will increase research engagement and relevance for patients via scientific publication and patient communications
• Ensure ongoing national availability and engagement of I-REP in trauma research

Projected Outcomes and Outputs:
Short term:

• Development of FG interview guide; recruitment of diverse stakeholder participants to the I-REP
• Facilitation of FGs to: inform promising engagement practices,  characterize attitudes on informed consent, improve patient participation in PCOR/CER
• Completion of online Delphi survey of stakeholders

 
Medium and long term:

• Dissemination of FG/survey findings to stakeholders to inform PCOR/CER and improve engagement strategies/outcomes 
• Creation of sustainable I-REP to engage stakeholders in trauma research, ensuring appropriate methods
• The development of patient/family-centered communications on participating in PCOR/CER
• Sustain the I-REP as an integral component of CNTR’s PCOR/CER

Patient and Stakeholder Engagement Plan: Recruit FG, survey, and panel participants from >100 hospitals with the Trauma Survivors Network and the Health Alliance for Violence Intervention. Patient researchers and caregivers were involved in project development and will be integrally involved in all phases of the project.

Project Collaborators: American Trauma Society, Health Alliance for Violence Intervention, Inova Fairfax, Johns Hopkins University, Society of Trauma Nurses, University of California-San Francisco, University of California - Los Angeles.