Poster (Clinical/Best Practice Implementation) ID 1985364

Abstract

The engagement of people with lived experience (PLEX) of spinal cord injury/disease (SCI/D) in rehabilitation research can lead to relevant questions and improved data collection, interpretation, knowledge translation, and research impact. We describe the process to create a toolkit which elaborates the roles that PLEX can play in rehabilitation research to ensure engagement is authentic and effective. Five separate working groups were convened to each focus on a specific role of PLEX: research team member, peer reviewer, knowledge translator, decision-maker, and fundraising ambassador. The roles of PLEX in research, relevant training tools, and indicators to measure engagement were explored through 17 virtual meetings with 45 scientists, research staff, learners, and PLEX. Menti-meter and Survey Monkey were used to select training tools via consensus. A summative meeting was held with all participants to achieve consensus regarding the role descriptions. Meeting transcripts and survey data informed iterations of the materials prior to achieving consensus. The Toolkit contains five role descriptions for PLEX as well as example activities, training requirements for scientists and PLEX, and specific indicators for each role. The Toolkit includes several best practice considerations and three practical tools for researchers to plan engagement, facilitate compensation, and implement/evaluate engagement. The Toolkit can be used by researchers and research organizations to develop, implement, and evaluate engagement plans with PLEX in SCI/D rehabilitation research. This Toolkit can be used to transform the SCI/D rehabilitation research and advocacy agenda, and contribute to more relevant research with a greater impact.