Giving Voice to SCI Patients in Their Own Research


Every time Joe needs routine health care unrelated to his spinal cord injury (SCI), he ends up providing the doctors with a laundry list of things they should be asking him, but don’t. Even though he is in his 30s, Joe doesn’t have a primary care physician. He can’t find one with an accessible office for routine exams; he gets his routine care from the specialist who he’s been seeing for his SCI. He’s starting to give up on trying to find a primary care physician because every time he educates them about how his injury affects his health, he gets a new doctor and has to start all over again. He feels it’s a waste of time and demoralizing, so he’s just stopped looking for a primary care physician.

Not every spinal cord injury is the same, nor is every person living with a SCI. But most medical research into caring for people with SCIs fails to address real-world, day-to-day issues people face. While some progressive SCI centers have used advocates with SCIs as research advisors in the past, HDA and the Patient-Centered Outcomes Research Institute (PCORI) are working together to tap into far more-meaningful input than ever before — input that could result in care better suited to dealing with real-world, everyday problems these patients face.

Working for Change that Matters

HDA is working to make SCI patients more relevant in research. We have teamed with Carol J. Gill, PhD, from the University of Illinois at Chicago to develop “research readiness” training with a diverse group of 25 people with SCI who live in Chicago and the metropolitan area. The training will help SCI patients become equal partners with researchers, influencing the research by preparing people to better articulate their lived experiences and bring focus to key questions that matter most to them. HDA and PCORI will connect these patients with researchers to get at those key questions, with the ultimate goal of improving the delivery of health care to people with SCI and and health outcomes they experience. Chicago is the first site to undertake this effort; HDA hopes to replicate across the country starting in 2018.

Creating A “Megaphone” for SCI Patients

Nearly a quarter of a million Americans live with SCI, and almost 12,000 people experience new injuries each year. SCIs involve complex health needs, including significant secondary health risks such as cardiovascular disease, mental health issues, and diabetes. Removing barriers to treating complex health issues has always been a focus for HDA. Our project with PCORI and UIC will create an early intervention to research barriers that continue to exist when members of the community are not incorporated in the developmental process. By giving SCI patents a role in effectively communicating the impact of their condition on proposed research, outcome accuracy, and ultimately health outcomes, will improve.

For 25 years, HDA has been breaking down social, economic, and structural barriers to health and well-being. We have proven track record of collaboration and hands-on expertise with disability and important health care and public benefits programs, and are a trusted partner of the disability community. HDA is proud to partner with PCORI and UIC on this important project.

Joe Entwisle
Senior Health Policy Analyst
Health & Disability Advocates

Melissa Turner
Strategic Initiatives
Health & Disability Advocates


If you’re living with an SCI and are interested in this project, contact us at pcori@hdadvocates.org. To learn more about PCORI and patient-centered research, visit pcori.org.

Note: This post originally appeared with a fictitious name.