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 an accident-, injury-, or violence-caused disability. 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 is a chance for people 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.
Here is the official project description:
The aim of this project is to 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 lived experience of people with SCI and those who are involved with them (including care givers, 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. 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.
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 will teach them how to use their own experiences to improve future studies. We want them to gain the skills and confidence needed to work together with researchers to explore information about disability.
Read more about the project in our blog post.
This project is made possible through generous funding from the Patient-Centered Outcomes Research Institute