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Meet the Mother of All Patient Registries

Cheryl Clark, for HealthLeaders Media, July 11, 2013

Another registry collects data from 5,000 rheumatoid arthritis sufferers to see which medications do a better job. This registry, run by Consortium of Rheumatology Researchers of North America, is enrolling 3,000 people in an effort to learn why patients start or stop drugs, and is monitoring changes in their ability to perform daily activities.

The Society of Thoracic Surgeons and the American College of Surgery, which keep the largest databases of heart procedures in the nation, are running the Transcatheter Valve Therapy Registry. This registry is gathering information on valve replacement procedures performed on 15,000 patients to examine safety and "real-world outcomes" such as major cardiovascular events, life-threatening bleeding, mortality, or other adverse events within 30 days. 

These registries, of course, only exist via the voluntary efforts of physician and hospital participants, who usually pay a fee to enroll. Nearly all of what those who run these registries might learn about quality of care gets reported back to the hospitals and doctors involved.  The information is not used by payers for pay for reporting or for pay for performance programs.

And almost none of the results of the registries are public, at least not yet.

However, these registries—especially those involving surgical procedures—are starting to get noticed by lawmakers as a potential way stakeholders can more quickly assess best practices and value. 

As part of the New Year's American Taxpayer Relief Act, Congress directed the Secretary of the U.S. Department of Health and Human Services to look at the potential of registries to become a platform for quality measurement, comparison, and transparency. One might presume that in time, the strategies that appear to produce superior outcomes may become the standard, with consequences for those who don't measure up.

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1 comments on "Meet the Mother of All Patient Registries"


R. Kaan Ozbayrak, MD, MBA, CPE (7/12/2013 at 6:54 PM)
International Consortium for Health Outcomes Measurement (ICHOM) has a similar effort at http://ichom.org/registries/role-of-registries/