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PCORI – a good idea or not?

December 11, 2012

Michael Millenson, in a recent blog on thehealthcareblog.com, tried to explain to us non-politicos some of the, well, politics behind the Patient Centered Outcomes Research Institute, or PCORI.  This is an institution that is sort of governmental, non-profit but funded by the Affordable Care Act (ACA).  Here’s what the PCORI website says it does:

“…was created to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions.”

That sounds awesome right?  Cuz I thought Patient Centered Outcomes Research meant studying whether it was better to pray or sing kum-by-ah.  Oh wait, here’s how the PCORI website describes PCOR:

“Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options.”

Allowing their voices to be heard?  What the heck does that mean?  Turns out, according to Dr. Millenson, PCORI was formed by two opposing groups: those looking for comparative effectiveness research and those who think the results of such research could result in rationing.  That’s why PCORI is called what it is.  That’s why the wording is so wishy-washy.  It’s a semantics game.  And it’s irritating.

But OK, what is PCORI doing?  Maybe it doesn’t matter what the political agenda is.  Check this out: http://www.pcori.org/assets/PCORI-National-Priorities-and-Research-Agenda-2012-05-21-FINAL.pdf.  The National Research Priorities and Research Agenda.  Seriously? 21 pages to say that they don’t know what they’re funding yet but they have 5 very vague and very broad general areas of interest.  For instance, PCORI wants to “Fund efforts that produce practical tools, aids, and skills that will assist patients, their caregivers, and their healthcare professionals.”  Well of course they do.  I’d like to fund efforts that produce practical tools, aids, and skills that will stop my 4 year old from whining.

So we’ll have to see.  It’s new and it’s funding is still theoretical.  They’ve spent an awful lot of time on it so far with some fancy graphics and PDF documents.  I would like nothing better than to see some real comparative effectiveness research on some real concrete medical interventions.  Why do I think the double-speak will continue and the message will be lost?

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