One little-noted provision I was encouraged to see tucked in last week’s fiscal-cliff legislation is Section 601(b): an incentive for doctors to expand their use of something called clinical data registries.
These registries collect information on patient characteristics, patterns of care and outcomes that can be crucial to evaluating what medical techniques and strategies work and which ones don’t. Unfortunately, registries are not as widespread as they should be — and the ones that exist often are limited to particular types of care.
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.
What would be ideal for people who analyze health care practices would be to have some way of combining registry and insurance-claim data. As the Engelberg Center for Health Care Reform at the Brookings Institution emphasized in a 2010 white paper, one could “describe registry data as ‘an inch wide and a mile deep,’ and claims data as ‘a mile wide and an inch deep.’ Linking these data sources can overcome the shortcomings of each to produce information that is both comprehensive and clinically detailed.”
Such linking requires, first, a matching algorithm that can make sure Jane Smith in the insurance-claims database is the same Jane Smith found in the clinical-data registry. It also requires getting the clinical data into a registry in the first place.
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. Such learning is the only good way for us to improve the value of the health care system.
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 couple of years ago, 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. Unnecessary implants not only raise costs but also pose dangers for patients; 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.
Even with all those steps, though, we would still need to encourage doctors and other providers to participate in registry data gathering. The fiscal-cliff legislation takes a step in this direction by allowing doctors to opt out of other quality-reporting requirements if they participate in an approved registry. This idea has long been promoted by Kavita Patel of the Engelberg Center. It won’t be a panacea, but every little bit helps.
It would make sense for Kathleen Sebelius, the secretary of health and human services, to make new registries for specialty care a priority. Many such registries already exist, but participation in them could be expanded to other types of care and more providers. Furthermore, other quality-reporting requirements are too basic to affect many areas of specialty care. Yet, as I have emphasized previously, Medicare costs are driven disproportionately by a small number of very expensive patients, most of whom are heavy users of specialty treatment. So early promotion of registries in those areas could yield ideas for lowering the cost of some of the most expensive care.
(The Congressional Budget Office scored Section 601(b) as having virtually no effect on the federal budget, but partly because the office understandably struggles with evaluating the effects of provisions that are designed to further broaden structural changes.)
At a time when politics in the United States are hyperpolarized, the Section 601(b)s of this world are few and far between. Yes, there’s much more we could be doing to limit cost growth, to continue the low growth rates we’ve seen over the past few years. But when big changes aren’t possible, let’s celebrate the baby steps.
Orszag is vice chairman of corporate and investment banking at Citigroup Inc. and a former director of the Office of Management and Budget in the Obama administration.