Stakeholder Training for People with Traumatic Spinal Cord Injuries
This first-of-its-kind collaboration aims to help patients play an active partnership role in the clinical research around this severe disability and to gain a real voice in their own care.
A “traumatic spinal cord injury” is a disability caused by an accident, injury or violence. We believe that living with a spinal cord injury makes the person uniquely qualified to assist the research community with studying information that is most useful to them. This was a chance for people with SCI who have ever asked themselves, “I wonder if anyone has ever studied that?” to learn more about where to find that information and how to use their own life experiences to influence what does get studied.
The aim of the project was to prepare patients with trauma-induced spinal cord injuries to play active roles in research to improve their health and quality of life, and become “research ready.” The concept was to use the lived experience of people with SCI and those who are involved with them – including caregivers, treating physicians, community support people, advocacy organizations, and nonprofits – to identify issues that are important to people with SCI and that may be the subject of future research.
During 2016, we recruited the cohort of stakeholders who will take part in the project. To help assemble a cohort, we enlisted the aid of the Broken Winggz Foundation, started by Eric Wilkins to advocate for those with paralyzing injuries after being shot and paralyzed in 1999.
During 2017, we worked with them on how to use their own experiences to improve future studies. This included monthly training and enhanced-skill building, such as how to identify research priorities by examining personal life experiences.
An expert panel of caregivers, treating physicians, researchers and community organizations collaborated with the stakeholder cohort using their collective experiences to identify key elements of research readiness.
A key goal was documentation throughout the project to create a replicable template. We continue to collaborate with a broad range of networks, such as the University of Illinois at Chicago, Schwab Rehabilitation Hospital, Sinai Health Systems, University of Chicago and the Rehabilitation Institute of Chicago, to disseminate key findings and template elements.