Improving Outcomes and Lowering Costs with Disease Registries

Posted by The Evidence Blog on February 15, 2012

by Jill Shuman, MS, ELS, Managing Editor, News Service

According to a study published in the January 2012 issue of Health Affairs, the United States could improve clinical outcomes and save money by adopting the use of more disease registries. Disease registries are online databases that incorporate clinical information on a specific condition from many different physicians and patient populations.

Researchers from the Boston Consulting Group and 3 Swedish hospitals analyzed data from 13 disease registries in 5 countries (Sweden, Australia, Denmark, United Kingdom, United States) and across 6 major medical conditions or procedures—cataracts, rheumatology, cancer, joint replacement, cystic fibrosis, and ischemia/heart disease. In addition, a number of healthcare professionals were interviewed to learn more about how registries work in various countries and to identify how they might influence clinical practice.

Compared with the other four countries, the complexity of the U.S. healthcare system has hindered the widespread development and use of such registries. This is unfortunate, as the researchers were able to calculate specific examples of how U.S. registries might improve clinical outcomes and lower healthcare costs.
For example, if the United States was to implement a hip replacement registry such as the one maintained in Sweden, we could lower the revision rate by 10% in 2015 and save $2 billion of the expected $24 billion in costs for revisions in that same year. In another case study, the researchers calculated that a national cataract registry could decrease the incidence of postoperative endophthalmitis—a complication of cataract removal—by 8500 cases. This translates to savings of approximately $25 million per year in direct medical costs and $125 million in medical and social costs.

However, all is not completely dismal. The researchers also cited successful U.S. registries, including the Cystic Fibrosis Foundation Patient Registry, the American College of Cardiology’s CathPCI Registry, and the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER) database, suggesting that disease registries can succeed in the U.S. healthcare environment.

Why does the United States lag behind other countries in the establishment of disease registries?

Much of the reason has to do with the U.S. health payer system, which is complex and fragmented, with few common reporting standards and clinical outcome metrics across this system—even within the same specialty. There is no national mechanism to compel providers to report outcomes to disease registries. Nor is there a unique patient identifier that would enable researchers to combine data across different disease states to examine the effect of complex comorbidities. As well, the widespread adoption of disease registries in the United States faces an additional cultural challenge in that improving clinical outcomes can be considered a competitive advantage. Thus, sharing results and best practices with other providers may well run counter to the interests of individual clinics and physicians.

The overriding goal of healthcare reform is to improve patient outcomes with a focus on healthcare value. Disease registries can contribute to this effort by engaging doctors and other clinical professionals in identifying, comparing, and adopting best practices that can both transform care, lower costs, and provide continuous learning opportunities for clinicians. While nearly all experts agree that a significant amount of direct care provides no or only marginal value to either the diagnosis of a patient’s condition or effective treatment of a diagnosed condition, the human consequences are also large when evidence exists but is not collected.

Topics: Hayes Blog, Healthcare Evidence

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