Whose Data Is It, Anyway?
These registries have been used for "internal quality improvement, to give members data that might help them improve, assuming the data don't go public and assuming that the data are fed back to the clinicians," says Wachter, Chief of Hospital Medicine at UCSF.
As they've evolved, the registries have become "the vehicle for physicians to begin to dip their toe into the measurement pool."
The Society of Thoracic Surgeons and the American College of Cardiology may have the largest such databases. Transplant surgeons, oncologists, general and vascular surgeons, nephrologists performing dialysis, and gastroenterologists also have them, and there are many others. In some cases registry participation may be a condition of certification or credentialing, while in others, not.
Some are great. Others are just beginning their journey.
But tucked into the New Year's American Taxpayer Relief Act is a provision that is making many leaders of these specialty societies quite nervous. The new law directs the Obama administration to set standards for what is a "qualified" clinical data registry, for purposes of fulfilling federal physician quality reporting requirements.
Eventually, most observers believe, this means pay-for-reporting and down the line, pay-for-performance.
The law directs the Secretary of the U.S. Department of Health and Human Services to consider whether any registry has appropriate mechanisms for transparency of data elements and specifications, risk models and measures, whether it provides timely performance reports "to participants at the individual participant level," and whether it supports quality improvement initiatives for its participants.
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