You may remember that I’m a Patient Reviewer for PCORI (Patient Centered Outcomes Research). PCORI, a federal initiative, helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community. It’s vision is that patients and the public have the information they need to make decisions that reflect their desired health outcomes. So far PCORI approved 51 awards, totaling $88.6 million over three years, to fund patient-centered comparative clinical effectiveness research projects. I’ve spent the last month reviewing applications for grants. I can’t tell you about the grant applications that I reviewed but I can remind you why this important for us and give some observations about the process.
Why is this important to us? Around $100 billion (with a B) is spent every year for medical research. This is not health care research. Medical research tests new treatments, mostly drugs. Much of the research never gets published because it didn’t prove what the sponsors or authors were trying to prove. Most research isn’t published (disseminated) in a form you and I can understand or use.
As an e-Patient, I want to know if one treatment will work better for me than another (comparative). I want to know what is the best way to build a health team and promote open communication and sharing of data about me, I want to know what can make the health care system work better with me and with people who aren’t as comfortable with the system as I am. I want to know how people best share health care information among themselves. How do you know what has value? I want to know if a treatment will help my quality of life, what affect it will have on my ability to work, function, do what I want to do? I’m curious how my community healthier. Good water, clean air, calmer, safer, more able to handle tragedy.
So I spent two days with researchers, patients, clinicians, administrators, advocates, caregivers. If process was key, then the respectful listening was impressive. I couldn’t tell who was a scientist and who wasn’t by the degree of patient centeredness in their point of view.
Most of the scientists were strong patient advocates. My biggest question after all this reviewing of applications was, How many of these grants actually change anything? I know that research only informs action – personal and policy. Research isn’t action. The system is geared toward established researchers who try to include patients. It’s not patients who try to include researchers.
We have a long road here. My next curiosity will be to track the grants awarded over the years and see how they’ve actually been disseminated and see what change have they motivated. Sounds like a different patient-centered outcome research.