One of the best ways to help other patients with IBD is to get involved in research. Until recently, you could only really do that as a ‘subject’ — a guinea pig for clinical trials.
The Patient-Centered Outcomes Research Institute — that’s PCORI, for short — is trying to change that. PCORI gets patients involved in research as leaders, to make sure the results are more helpful to patients in the end.
Last week, I attended PCORI’s first annual meeting. They awarded scholarships to patients who registered — even though I barely knew what the meeting was about. I soon learned: PCORI is a not-for-profit corporation established by the Affordable Care Act. The meeting was to share and celebrate their work over the last few years.
The Institute’s mission is to promote patient-centered medical research — this as opposed to what I’ll call disease-centered research, which is how it used to get done. In disease-centered research, scientists identify a problem, propose a solution, and decide what counts as success. PCORI-funded research, on the other hand, encourages patients to be involved at all stages — including planning — of research into medicines, treatments, and other interventions.
So, for example, one study PCORI is funding looks at how to help young diabetes patients take better care of their insulin levels: the study team includes a panel of young patients to help researchers identify problems and possible solutions.
Another study looks at how much radiation is used in CT scans, to help make sure that patients are not getting more ionizing (= cancer-causing) radiation than they need for diagnostic studies. Patients and their care-givers help advise the researchers and review their progress.
PCORI also funds a study looking at how to create genetic reports for patients with rare diseases, so that physicians and patients have similar information, written in appropriate language.
At the meeting, I learned about each of these studies and more. I learned how PCORI is turning medical research inside-out, by helping patients be more involved and more pro-active in studying the problems they face.
I also learned that there are a lot of ways we can get involved. For example, PCORI is already funding a number of studies on inflammatory bowel disease — including studies on whether patients prefer prednisone to biologic meds, and the use of combination therapy for kids with Crohn’s. These studies need patients’ help.
Patients with IBD can also join the Patient-Powered Research Network (PPRN). This is a partnership with the Crohn’s & Colitis Foundation of America, to promote better research on IBD. (Note: I recently applied to join the Patient Governance Committee, which is how I found out about the PCORI Meeting.)
You can also become a PCORI Ambassador, to represent PCORI and get involved with research in a broader context. I crashed a reception for PCORI Ambassadors, and there weren’t a lot of people representing inflammatory bowel disease. You might end up doing some work that is not directly related to IBD, but it’s still a great way to get involved. Plus, you might get to go to next year’s PCORI meeting for free.