This project will prepare patients with trauma-induced spinal cord injuries (SCI) to play active roles in research to improve their health and quality of life. Under the guidance of an expert panel of researchers, clinicians, caregivers, and advocates, we will develop and implement a curriculum to train a cohort of patients with traumatic SCI to become research ready. We plan to use the life experience of patients with SCI and those who are involved with them (including care givers, treating physicians, community support members, advocacy organizations, and nonprofits) to identify issues that are important to people with SCI and that may be the subject of future research. Finally, it is our intent to create a model that can be replicated by others who want to engage people with SCI in research that affects their health and well-being.
The projected outputs from this project include a collaboratively developed research-readiness curriculum and facilitation of training for diverse individuals with trauma-induced SCI; quarterly expert panel/stakeholder meetings held to develop a research priority agenda; and production of a dissemination plan to support replication.
Project collaborators include patient stakeholders and the University of Illinois at Chicago.
HDA developed a process document – Rules of Engagement – for both our Expert Panel and our Stakeholder Cohort. This helps all understand expected roles and responsibilities as well as creates “collaborative norms.” The Expert Panel has been successfully using the Delphi process for input on different aspects of the project. This document will be adapted or evolved as needed over time.