Whose Data Is It, Anyway?

Cheryl Clark, for HealthLeaders Media , April 18, 2013

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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2 comments on "Whose Data Is It, Anyway?"

Jason Uppal (4/21/2013 at 9:33 PM)
I am an engineer by training and worked many years in several industries in business transformation. Quality improvement is a fundamental component of business transformation. The mistake the healthcare industry is making the same mistake Detroit automotive industry made 35 years ago. Quality improvement measures such as internal process audits, compliance audits, adverse events are used to ensure the process effectiveness, not to taut your quality score. If you want to measure quality of healthcare at a hospital let them publish patient satisfaction, patient outcome for an episode, length of stay, total cost to achieve that outcome. Those measure matter to the public. When I buy a car, I don't care how many times the assembly line was stopped by a worker because a non compliant product, I care how often I need to take it back to the dealer for fixes that should have never occurred and what I paid for it.

Jane Alop (4/19/2013 at 12:03 AM)
I agree, publicly paid serviced should be transparent to public, but we have to remember it might be also confusing information to public. What is the purpose - to pay less (optimum) or to have a better health care quality? Usually the answer is P4P what means in some cases we pay more for good quality and in some cases we will not pay for poor performance. In both cases we need criteria to identify the quality of provided care and this can be done only by clinicians and patients and its pros and contras are proved in thousands surveys not mentioning the quality of the data from specialty registers this data come from. In Estonia we are very cautious thinking P4P implementation thanks to Alan Maynard report. Estonian Health Insurance Fund, who is a main purchaser, aim is to have better and on equal level quality in whole country. For that purpose we [INVALID] yearly a feedback report to hospitals using the data from invoices the hospitals send to insurance fund to get paid. Based on this data we calculate common quality indicators. Yes, this is a very robust analyze and we all have to remember the data is not specially collected for quality assessment, this data are from a financial document. But this is also the value of it - insurance fund database is most complete database as everyone want to be paid :). Second - the provided services are coded based on insurance fund pricelist all provider have to use. If someone is not happy with results and put the question about data quality it always goes back to hospital as insurance fund don´t change the account information sent by the hospital. The main purpose of this report is to provide feedback to hospitals that they can compare themselves to other hospitals in Estonia and to provoke IN hospital discussion about possibilities of quality inprovement. It is also the way to do benchmarking. And we don´t spend any extra money for collecting this data :) - we are a very small country and can use very limited amount of resources.




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