Disease registries designed to support clinical research can be reimagined to create a new and more effective kind of patient-centered care. Just take a look at Sweden.
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.