Clinical Registries: Getting Necessary & Costly

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Many tout the benefits of clinical registries because they allow for benchmarking of one provider to another, linking measurement to performance improvement and leading to the betterment of overall quality of care. However, some point to the costs as potential drawbacks to individual providers that are getting increasing pressures to participate.

Here to stay

There are at least three types of clinical registries: procedure/therapy/encounter-based, disease-based and population-based registries, according to the American Heart Association's (AHA) policy statement on registries (Circulation 2011;123:2167-2179). "Registries also can be classified from a functional perspective, such as whether the registry is used to conduct clinical research, to perform quality measurement or to provide feedback to clinicians for quality improvement," the recommendations read.

In the past, when the quality of healthcare in the U.S. has been measured, significant gaps in care, unexplained variation in care delivery and outcomes and medical errors have been revealed. As a result, registries have been on the rise. They seek to provide benchmarks from which physicians can compare themselves to peers. Importantly, they also allow the cardiovascular community to monitor itself, without the interference of government regulations.

The specialty of cardiology, which relies heavily on clinical data, offers a plethora of registries, such as the Society of Thoracic Surgeons (STS) Database, the AHA-Get With the Guidelines (GTWG) initiatives and the American College of Cardiology's (ACC) National Cardiovascular Data Registry (NCDR) programs. Some suggest that regardless of the practice type and the cardiac patients served, registries provide something for everyone.

Vincent J. Bufalino, MD, president and CEO of Midwest Heart Specialists, says the 50-cardiologist outpatient facility in Elmhurst, Ill., measures outcomes through registries and provides quarterly feedback to physicians on measures, such as blood pressure control, cholesterol control or medication management.

Initially, Bufalino's cardiologists resisted. "All practitioners assume their outcomes are near perfection, but when we started measuring within my group in the early 2000s, there were a lot of 70s," he explains. "This refocused everyone's efforts internally, because they all wanted to be as good as they could be." Midwest Heart recently reported 28 consecutive quarters with 520,000 patient visits, and they were in the 90-plus percentile on every measure, he says.

However, Bufalino attributes his outpatient practice's capability to measure outcomes to its EHR system, an asset many outpatient practices lack. But, he adds, "Like it or not, we are being measured, and we are going to be measured more and more."

Also, registries can be used to inform healthcare policy. For instance, in a study funded by the FDA, a subset of hospitals participating in the CathPCI registry took part in an investigation of bleeding complications associated with various groin closure devices (J Invasive Cardiol 2005;17[12]:644-650). This study linked VasoSeal (Datascope) to a significantly higher rate of vascular complications, which led to the removal of that device from the U.S. market.

Transparency on full throttle

"Clinical registries must be designed with sufficient safeguards, rigor and transparency to ensure that the primary functions of the registry are well served," according to the AHA policy statement, on which Bufalino was the lead author. In fact, transparency for physicians and patients seems to be the driving force behind these registries.

The public's need for information may soon find satiation in healthcare. "Provider data are more frequently going to be available for public scrutiny," says Frederick A. Masoudi, MD, senior medical officer for the NCDR and a cardiologist at the University of Colorado Denver, who sees a broad movement toward public accountability for quality of care. "It is a pretty common theme across medicine, particularly in cardiology."

As an example, the STS database is the largest such registry in the world, including more than four million surgical records and representing more than 90 percent of adult  cardiac surgery groups in the U.S. In 2011, the STS agreed to share the data on heart bypass surgery with Consumer Reports to help patients make informed decisions.

"This decision by the STS is part of the new era of transparency in making sure that patients can make