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You're a Person, Not a Data Point

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"You've got high blood pressure," the doctor says, "but the good news is, we can manage it." As your physician discusses a prescription regimen, you're startled to learn that there are over 200 medications that can be used to help treat your hypertension. How are you -- and how is your doctor -- supposed to know which one is right for you?

Answering that question is the point of something called "Comparative Effectiveness Research" (CER), a federally-funded effort that evaluates and compares the effectiveness of different treatments for a particular medical condition. The basic policy rationale for CER, which gained support in the 2010 Health Care Reform bill, is solid and unobjectionable: as doctors and patients have better information about what works most of the time, most patients will benefit, and unnecessary health care costs will be reduced.

But lurking in this framework is a very real danger: the impersonalization of health care.

Why impersonalization? By definition, the national CER data show what works best for the majority of patients -- but not all. In some cases, there will be a minority of patients who don't respond best to that "majority medical treatment." On the one hand, knowing what works for most patients will likely help most patients. But is there a risk that the data will be used by the government to discourage certain medical treatments that -- even if not the most effective treatment for most -- are still the most effective treatment for some?

To help manage this process, the 2010 health care bill created an independent, non-governmental board called the Patient-Centered Outcomes Research Institute (PCORI). The entity's mission: to prioritize and fund CER-related research into what works best for most people, and communicate the results to the public. PCORI is meant to ensure that the CER process is open, transparent and honest -- and to protect patients from the misuse of research results by policymakers.

But who keeps an eye on PCORI? Congress should, and so should the public. A key decision-making body within PCORI is its "Methodology Committee," that -- as the name suggests -- determines how CER-related research is conducted, which can have an enormous effect on research results. But several members of the committee have received research grants from the government. That's not necessarily a fatal flaw, but if PCORI is to work as a check against government misuse of CER data, it must remain truly independent.

At the heart of all of this is a very simple question: how much value will we give to the doctor-patient relationship? One of the reasons that the U.S. has the best medical system in human history is the deference that policymakers have traditionally shown to individual physicians' judgment and experience. True, one could design a national health care system akin to treatment-by-vending-machine: put in your condition and a credit card, and it spits out a medicine, no discussion needed. But is that really best for patients?

Ultimately, medical decisions must remain between patients and their doctors, and what works best for most patients may not work best for all. The goal of CER is important and, used properly, it can be an enormously effective tool in managing treatments and saving lives. But it is just that -- a tool. CER should help physicians make informed decisions, not be used as a substitute for their judgment and experience, and certainly not as a substitute for the doctor-patient relationship. You're a patient, not a data point -- and policymakers, both in the government and on the PCORI board, do well to remember that.