When I was 10, I was in a car accident and lost my legs below the knees and also lost my brother. Three days later, I was in the ICU, and a gentleman came in to see me. In one smooth movement, he jumped out of the artificial legs he’d been wearing and landed on the bed next to me. He was showing me that my life wasn’t over, that I’d still be able to do what I wanted to do. Since then, I’ve been interested in patient-centeredness, particularly peer support, in the trauma environment.
In 2011, psychiatrist Doug Zatzick asked me to speak to the American College of Surgeons. Dr. Zatzick gave a presentation on post-traumatic stress and alcoholism, which trauma patients often have. Then other trauma patients and I shared stories about how crucial patient-centeredness was to our recovery. That prompted the ACS to change their guidelines on stress and alcoholism, but not on patient-centered care—we just didn’t have the data.
The patient stakeholders weren’t just window dressing; we had an integral role.
When PCORI came into being, Dr. Zatzick earned a contract to do comparative effectiveness research on patient-centeredness in trauma care. From the beginning, I was very impressed with how much the researchers listened to the patient stakeholders. We participated in designing the research. We had monthly meetings where we examined the data as they came in.
The patient stakeholders weren’t just window dressing; we had an integral role. In fact, other patients and I have been named as co-investigators. Now, we have data suggesting how important patient-centeredness is, and we’ve been invited to submit it to the ACS.
The research community is really starting to realize the value of patient-centeredness. Many are realizing that they probably should have been doing this all along, involving the people who are actually affected. It's not rocket science, yet it's taken a long time to be adopted. PCORI has ingrained patient-centeredness in the research community. It's opened up a huge, new set of opportunities to answer questions that are meaningful to patients.
Peter W. Thomas, JD, is a principal at Powers Pyles Sutter & Verville, a Washington, DC-based law and legislative practice. Thomas specializes in government relations, public policy, and several areas of healthcare policy, including disability and rehabilitation. Thomas, who survived a serious car accident at the age of 10 and is a strong advocate for patient-centered trauma care, also is a patient co-investigator in a PCORI-funded study of patient-centered care in trauma care systems.