Patient Empowerment

Discussing ideas with a SCI stakeholderThis first-of-its-kind stakeholder training project aims to prepare people with traumatic spinal cord injuries to play active roles in SCI research.

A cohort of stakeholders was recruited in 2016 with 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. Workshops in 2017 are designed to help cohort members gain the skills and confidence to leverage their own lived experience to improve future studies.

The project is made possible through generous funding from the Patient-Centered Outcomes Research Institute, a non-governmental nonprofit organization established by the Affordable Care Act. The institute is charged with examining the relative health outcomes, clinical effectiveness, and appropriateness of medical treatments; part of the intent was to address the needs of populations that traditionally have not been the focus of randomized controlled trials, as well as to perform comparative effectiveness research, or CER, which evaluates the effectiveness of medical interventions relative to each other.

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