A provision in the Fiscal Cliff law enables physicians to opt out of other quality reporting requirements if they participate in a federally qualified Clinical Data Registry.
These registries collect information on patient characteristics, patterns of care and outcomes that can be helpful for evaluating what medical techniques and strategies work and which ones don’t.
Data from insurance-claim forms, in contrast, are easier to obtain and more comprehensive across episodes of care. However, these reveal only which tests and procedures were performed, and tell very little about how the patient fared.
Electronic health records contain much information about patient outcomes, and in digital form. Yet their promise will not be realized unless, with appropriate privacy protections, the data are recorded in registries, making it possible to learn from the array of medical experiences that various patients have.
Many medical specialty groups and some providers are already using clinical-data registries. The Maine Medical Center, for one, has a registry on patients treated for heart disease and diabetes. The Society of Thoracic Surgeons has long sponsored a national database with information on patients who undergo coronary artery bypass graft and other types of thoracic surgery.
And the American College of Cardiology Foundation has its National Cardiovascular Data Registry, which collects information on many kinds of cardiology care. A research team from Duke University was able to use the cardiovascular data to discover that more than 20 percent of heart patients who received implantable cardioverter defibrillators should not have received them, based on evidence guidelines. The study found those with implants who didn’t need them stood a risk of in-hospital death and post-procedure complications that was significantly higher than that of patients who fit the evidence guidelines. Without a registry, such analyses are not possible.
So what could be done to encourage more clinical-data registries? The Engelberg Center has identified several sensible steps, including clarifying the privacy rules associated with linking databases, standardizing data elements and definitions for the registries, and working to ensure that registries and electronic health records can operate in synchrony.
To encourage doctors and other providers to participate in registry data gathering, the fiscal-cliff legislation allows doctors to opt out of other quality- reporting requirements if they participate in an approved registry.