Here in America, we spend a great deal on medical research that often does not reflect the interests of people who have the condition being studied. The Patient-Centered Outcomes Research Institute was established by the Affordable Care Act to engage people with lived experience in studies on the condition they are living with. In 2016, PCORI funded our project to prepare patients with trauma-induced spinal cord injuries to become “research ready” and to play active roles in research to improve their health and quality of life.
This first-of-its-kind stakeholder training project brought together a cohort of patients with SCI and a group of experts to distill and synthesize their shared experience. The 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 were designed to help cohort members gain the skills and confidence to leverage their own experience and insights to improve future studies.
PCORI is charged with examining health outcomes, clinical effectiveness, and appropriateness of medical treatments. It seeks 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 analyzes different medical interventions for a condition to inform medical decision-makers regarding their relative effectiveness.
Visit the project site