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Patient Centered Outcomes Research--a good start

The affordable care act, in its 2000 plus pages, provided for many projects with the potential to improve health care delivery in the US. The most actively debated part of the bill, the mandate to insure just about everyone, may not turn out to be the most important piece. The problems the affordable care act attempted to address are the fact that American health care spending is too high and buys too little, including poor outcomes for those who do get health care and the fact that too few people who need health care actually receive it. All of these issues are addressed in some way or another in the myriad provisions of the bill.

One rarely advertised provision of the bill is the Patient Centered Outcomes Research Institute (PCORI).  This is a private institute, publicly funded, which includes a huge diversity of players, from patients to providers and sundry others, who are charged with figuring out exactly what Patient Centered Outcomes Research is, and then making it happen and disseminating the results. According to a recent article in the New England Journal of Medicine, they have been holding meetings, many of them public, just to figure out what it is that they feel they should do and how they will most effectively do that thing. At this point the groundwork is mostly done.

The PCORI has decided that its prime directive is to help patients answer these 4 questions:


  1. “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”
  2. “What are my options and what are the benefits and harms of those options?”
  3. “What can I do to improve the outcomes that are most important to me?”
  4. “How can the health care system improve my chances of achieving the outcomes I prefer?
Given the present scurrying behavior of most physicians to try to  develop systems to help them practice evidence based medicine which will theoretically pay them more for reaching certain benchmarks in treating various common diseases, these patient centered questions are very relevant and an absolute necessity. As we as physicians begin to see our paychecks depend upon whether our diabetic patients are getting statin medications to prevent heart attacks and maintaining certain blood glucose levels, we vitally need to be reminded that our job is truly to improve patients' lives. That means adjusting what we do to respond to those patients' educated preferences. Results of patient centered outcomes research may help us do that.

I have some misgivings about the PCORI. It is very large. I can't quite figure out how large, but large enough that it sounds as if decision making is slow going. That will not slow the research that they fund, since that can be done by small groups with good ideas. Still, implementing change based on new research may be slow. I also wonder how information that helps doctors and patients make individualized decisions about care will interact with the freight train of "pay for performance" based on scientific evidence which usually demands strict adherence to a protocol. 

I presently choose to have faith that the process of patient centered outcomes research will eventually meet up with pay for performance and we will actually be paid for the performance of individualized care for patients who are undeniably individuals with individual needs and preferences. It is just possible that the truth shall set us free.

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