Tell PCORI What Research Funding We Really Need
So, at this national conference, Partnership with Patients, I met a bunch of "e-patient advocates," which are civil rights fighters in all the other "medical" areas. One thing I learned at that conference was that there are many "patient" advocacy opportunities. One of them is PCORI, the "Patient" Centered Outcomes Research Institute. This is theoretically an organization that funds research that people with lived experience ask for. However, the problem is that they aren't really talking to our community and we aren't talking to them. So they did this big splashy launch about "mental health as a major focus," and they said what they had figured out that mental health needed was.