How a Swedish Model of Care is Making an Impact in the U.S. [RWJF.org]

Large-scale collection of patient data into disease-specific databases, or registries, is vital to research. These registries house standardized information on patients’ diagnoses, care, and outcomes, supporting large-scale comparison and analysis which can lead to better population health management and interventions. But can disease registries also help to move us closer to patient-centered care?

We’re learning from examples overseas that, with the help of new interactive technologies, they can.

Sweden created a disease registry for rheumatology that is much more than a data storage house. The Swedish Rheumatology Quality Registry (SRQ) is an interactive tool that helps patients and doctors prepare for and make better use of their office visits. It helps them to work like a team—to “co-produce” care together.

A patient can log on to the registry on her laptop, tablet or mobile device. While sitting at her kitchen table, she can review her doctor’s notes, check her test results and enter information of her own on her symptoms, progress and challenges. These data are synthesized and graphically displayed to provide a real-time snapshot of her health and a longitudinal image that shows her health and treatment trends over time.      

The result is a clinical decision support tool—a dashboard—that helps patient and doctor work together to create health that goes beyond lab values and disease symptoms, to focus on the patient and what’s important to her.