Harnessing the power of health information into data profiles can give physicians the ability to pinpoint problems, reduce errors, and provide better quality care. That is the goal of clinical data registries, which compress health records into lists of patients with a single condition or procedure that capture the care they received. This data can then be analyzed for refining and improving care.
Registries have emerged as an important tool for defining and measuring health care quality, and can serve as feedback devices for care providers. They can also track physician performance against well-established treatment protocols.
To highlight the value of registries, the Kaiser Permanente Institute for Health Policy, AcademyHealth, and the Pew Charitable Trusts partnered to profile some of the leading registries in the United States and abroad. In a series of portfolios, six clinical data registries are profiled featuring their governance structures, data collection processes, and end-users. The portfolios highlight key benefits of each data registry for policymakers and other decision makers.
In July 2014, two of the six registry portfolios were released—both focusing on joint replacement surgery (such as hip replacement). The first profiled the Kaiser Permanente Total Joint Replacement Registry (TJRR), which is the largest orthopedic registry in the country. Based on feedback from registry data, Kaiser Permanente orthopedic surgeons have made numerous discoveries leading to clinical improvements. They discovered which implant devices are safest and most reliable. They uncovered which patients are most highly disposed to surgical complications. And they identified which surgical techniques produce the best patient outcomes. The TJRR helped Kaiser Permanente reduce revisions (repeat surgeries) from 15.4 percent in 2002 to 10.1 percent in 2010.
The second registry featured was the Australian Orthopaedic Association (AOA) National Joint Replacement Registry (NJRR). This registry monitors the outcomes of joint replacement and has been effectively used to improve care quality for patients in Australia. NJRR has helped in producing cost savings, informing medical device offerings, and educating surgeons. The registry helped in reducing the number of revision surgeries in Australia from 13% in 2003 to 11.2% in 2010.
In August, the third registry featured was The Society for Thoracic Surgeons/American College of Cardiology Transcatheter Valve Therapy (TVT) Registry, which monitors the safety, effectiveness, and real-world outcomes for TVT. The registry serves as a platform for device and procedural surveillance, quality assurance and improvement initiatives, and for studies on expanded indications of transcatheter aortic valve replacement, a new type of TVT.
Portfolios for the remaining three data registries will be released in the coming months.