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Knowing What's Right Could Help Improve Patient-Centered Outcomes

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"Doing what's right isn't the problem. It's knowing what's right." These words, spoken by Lyndon Johnson, could apply to the Patient-Centered Outcomes Research Institute (PCORI) which is clearly trying to "do right" but, to date, has shown little evidence that it knows what's right.

PCORI was created under President Obama's health reform law to, in simple terms, find out which treatments work best for patients and to ensure that this information is effectively communicated to patients and medical professionals to improve care.

While the government is statutorily prohibited from using these research findings to make coverage decisions -- some might even consider this rationing -- private insurers are free to use the best available information to decide for which treatments they will pay. Some research organizations have concerns that government-sponsored comparative effectiveness research could lead in the direction of government picking 'winners' and 'losers' among new drugs and treatments and actually reduce research and development spending by bio-pharmaceutical companies, potentially sidetracking the introduction of promising new therapies.

But in the end, it is difficult to argue against having more and better information available about what treatments work best -- and for whom. And ultimately, this knowledge should not only lead to better health outcomes but also reduced costs.

The problem is PCORI has gotten off to a slow and very misguided start. The most recent example is the Institute's "Draft National Priorities for Research and Research Agenda" issued last month.

Patient groups, policymakers, researchers and the medical community widely expected this agenda to identify specific research projects that might be funded. This would have been a logical step since already the Institute of Medicine and other organizations had put forward detailed and well-considered lists of priorities. But PCORI simply punted on making any difficult or potentially politically sensitive decisions.

Instead, the Institute listed five broad categories of research it may conduct: prevention diagnosis and treatment; healthcare systems; communication and dissemination; disparities; and methodological research. It's that fifth priority , "Accelerating Patient Centered Research Methodologies," that shows a shocking lack of understanding of the current research landscape.

PCORI thinks its needs to spend money training researchers and building research networks because, [t]he Nation's capacity to conduct patient centered CER quickly and efficiently remains extremely limited."

This statement is simply not true. In fact, many in the medical research community would argue that the capacity to conduct this type of research is virtually unlimited if PCORI considers the availability of clinical research organizations,, other healthcare research and consulting firms and some of the top-level academic research centers.

Much as PCORI has pledged to avoid redundancy and coordinate efforts with other entities that conduct CER, like the Agency for Healthcare Research and Quality and the National Institutes of Health, we strongly encourage PCORI to use the plentiful, highly-qualified research resources that currently exist to carry out its agenda. There is simply no need to re-create the skilled workforce and vibrant networks that currently exist in the private sector and some areas of academia.

This priority area is targeted to receive 20 percent of PCORI's funding over the next 10 years, or approximately $600 million. These funds would be much better allocated to conducting actual research that may lead to improved health outcomes rather than activities around training or "infrastructure development" where a strong research platform already exists.

While a government-funded entity like PCORI will not advance the development of new, innovative drugs, it can fund the thoughtful and unbiased evaluation of treatment options for patients suffering from chronic and life-threatening conditions. What it should not do is create an inefficient and unwieldy new research apparatus where established expertise already exists.