Oct 5, 2016, 9:35 AM, Posted by
Laura Leviton, Susan Mende
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.
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Aug 20, 2015, 12:00 PM, Posted by
Galina Gheihman, Laura Leviton
What can a small Swedish county teach us about building a Culture of Health in the United States? We visited Sweden and brought back some valuable lessons on patient and citizen engagement.
Imagine a society where everyone has the means and opportunity to make choices that lead to the healthiest lives possible––a society where health is valued by all, and no one is excluded because of chronic illness or other limitations. This is what we call a Culture of Health, and it’s what, in collaboration with others, the Robert Wood Johnson Foundation is working to build in the United States.
We know that to achieve this ambitious vision, we must look to––and learn from––promising approaches across industries, disciplines and geographic borders. This is why we recently visited Jönköping, a small county in south-central Sweden, where patient and citizen engagement has brought about remarkable results: kidney failure patients operate dialysis machines on their own schedule, complex patients—such as people with schizophrenia—actively participate in designing their own care and children’s preferences and experiences are listened to, so services can improve from the children’s point of view.
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