Last week, I was able to go to the PCORI Merit Review as a patient / caregiver reviewer and it was fantastic. I can't say anything about the applications, because that's confidential, but I'm so delighted with the concept and process that I have to share that.
Each funding application is reviewed, not just by doctors and scientists, but by patients, caregivers and other stakeholders. Stakeholders is sometimes a buzzword -- in this case, it was patient advocacy group members or people who work for hospitals. I went as person deeply interested in how "care is delivered," the information we have to base decisions on and the effects on the patient and their family.
I can't say enough about PCORI, which is innovative in something that seems quite obvious to most people -- that patients and their caregivers are stakeholders in medical research. We want to know. We need good information to make decisions. Health matters to us. It's based on democratic principles, that people have a say in things that affect them.
To read more about PCORI, go to www.pcori.org