Where I'm at

I'm in DC for a grantee meeting of the Patient Centered Outcomes Research Institute (PCORI). I may have had a bit to say about PCORI before, can't quite remember, but it's important for the masses to know about.

PCORI is the product of a little-noticed provision of the Affordable Care Act. More specifically, along with the Medicare Independent Payment Advisory Board, it is one of two Death Panels. (Ha ha.) Actually, it has been characterized in that way, as being a way of "rationing" health care. What it really does is fund research, specifically comparative effectiveness research. In other words, the mandate is to learn what medical interventions work best for what people. The "patient centered" in the name means that PCORI has to define outcomes in terms of what matters for patients, and the way they do that is by involving patients as collaborators in all stages of the research process. By law (and very unfortunately), PCORI is not allowed to calculate cost effectiveness or even use Quality Adjusted Life Years as an outcome measure. Still, if you find out that intervention A costs more but intervention B is more effective and gives you less pain along the way, presumably you'll choose B and we will save some money.

PCORI is funded by a surcharge on health insurance premiums. Yes, a tax. Since it will presumably help insurers save money, they ought to be for it, but so far they haven't been talking. PCORI is a private non-profit, congressionally chartered corporation, not a government agency. So congress can't defund it by inaction. As long as the Dems have at least one house of Congress or the presidency, it should continue on. But it sunsets in 2019, and will have to be reauthorized before then.

With NIH funding being steadily reduced, this helps a bit to fill the gap in health care research. But the focus is very specifically work that NIH does not fund so much of. We aren't about making new biomedical discoveries, we're about using the technology we already have wisely. We're about making it easier for patients to understand what's going on and make decisions in their own interest. How that's rationing or death panels I can't quite figure out, you'll have to ask a Republican.

I'll say more about this, including my own work, anon. The challenge of getting doctors and the medical institution to change course and really be built around serving patients is huge, but that's what PCORI is trying to do. And they're sincere about it. Write your congressritter.