How a Swedish Model of Care is Making an Impact in the U.S.
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.
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.
The data from each visit also contribute to better public health. Structured data stripped of patient identifiers are immediately exported to the national SRQ directory for improving population health, helping physicians benchmark the quality of their care.
From a quality perspective, the implications are exciting. Engaging patients to track their symptoms and quality of life outside the doctor’s office and participating more actively in their care led to substantially better health outcomes.
Over 10 years, the Swedish Rheumatology Quality Registry has helped improve the use of expensive rheumatology medications in Sweden. Along with the introduction of these drugs, the SRQ helped to reduce inflammations and cut the number of total hip replacements by 90 percent in patients with rheumatoid arthritis. Practices participating in the registry documented a 50 percent decrease in inflammation among patients with rheumatoid arthritis.
At RWJF, we’re actively seeking ideas from outside our borders to inform our work to build a Culture of Health here in the United States—and we couldn’t pass this one up.
With our support, the Dartmouth Institute for Health Policy and Clinical Practice and the Karolinska Institutet of Sweden explored the feasibility of adapting approaches like SRQ for use in the U.S. After all, the U.S. has hundreds of electronic patient registries, but could they do more than serve as data repositories for researchers and disease management programs?
The Dartmouth-Karolinska team felt that they could. As a result of the team’s recommendations, RWJF is now working with Dartmouth, the Cystic Fibrosis Foundation, and Cincinnati Children’s Hospital to adapt the SRQ model in the U.S. for patients with cystic fibrosis. By incorporating elements of the SRQ model into the Cystic Fibrosis Foundation's U.S. patient registry, doctors and patients with cystic fibrosis will now be able to use it to help co-design best individual treatment plans.
That project sparked the interest of the Crohn’s & Colitis Foundation of America, which asked Dartmouth to advise them on creating a registry model for co-producing care with patients who have Crohn’s. Called IBD Qorus, the program comprises 20 gastroenterology practices—a mix of community-based practices and academic centers—across the country.
Over the coming years, tens of thousands of patients are expected to be part of the program, which is designed to both prepare them for their doctors’ visits and engage them in their own care.
At the same time, IBD Qorus ensures that each visit focuses on what’s most important to the patient at that moment in time. The patient dashboard asks a series of questions for patients to answer before their visits.
The key question that can turn the conventional office visit upside down?
“What is the single most important thing you want to talk about during your visit?”
As it turns out, patients frequently don’t want to talk about their disease. They want to talk about what’s going on in their lives and how their disease affects their lives.
Corey Siegel, M.D., a doctor and professor at Dartmouth, told us a story of a young woman with Crohn’s who was doing well with her medications. When asked what she most wanted to discuss with Siegel at their visit, she replied that she was getting engaged to a man who also had Crohn’s. She worried about how they as parents would be able to take care of their future children.
“It ended up being a very powerful and emotional visit,” Siegel told us. “We were able to talk her through her concerns and how parents with Crohn’s care for children.” But it wouldn’t have happened that way without the prompt to focus the visit on what the patient wanted out of it.
Another of Siegel’s patients came to see him every six weeks for rituximab infusions. His most pressing concern? Every time he came in for his infusions, he was forced to take vacation time from work. This meant that he was losing a lot of vacation time just to deal with his illness, and it was affecting his family.
Siegel enrolled the man in a home care program so that he could receive his infusions at home from a nurse, without using more vacation time.
“This is not something we always think about as providers—the impact our care is having on someone’s life,” Siegel says. Having the interactive tool actually helped Siegel think past his patient’s disease to how that disease was affecting the patient’s life. Think about that: even inside the doctor’s office, health is more than medical care. It’s about understanding how patients live their lives every day.
As we learned from the Swedish experience, we have a real opportunity to re-imagine disease registries so that they support a new kind of health care, one that is co-produced by doctors and patients together and that focuses not just on treating disease but on empowering patients to live more satisfying lives.
If you’d like to learn more about how the Karolinska partnership came to life and other lessons from abroad, watch our archived webinar, "Transforming Health Care" in our Reimagined in America: What Can the World Teach Us About Building a Culture of Health? series, where Corey Siegel, Duke University’s Krishna Udayakumar and RWJF team director Karabi Acharya engage in conversation about promising ideas from overseas that can be adapted to improve health here in the United States.
Susan R. Mende is a senior program officer at the Robert Wood Johnson Foundation, working to put consumers first in a value-driven health care system. Read her full bio.
Laura Leviton, PhD, is senior adviser for evaluation at the Robert Wood Johnson Foundation.