Preparing to Import a Successful Model for an Interactive Disease Registry System to the United States

Dates of Project: September 2013 through April 2014

Description: The electronic Swedish Rheumatology Quality Register is actually much more than a registry. It is an interactive patient-provider decision support system. It collects and then displays visually data on patient-reported outcomes, doctor’s notes, and test results. Patients and providers use this information during an office visit to co-design and follow-up a treatment plan.

Research staff from the Dartmouth Institute for Health Policy and Clinical Practice (Lebanon, N.H.) and the Karolinska Institutet (Stockholm, Sweden) assessed the feasibility of adapting the SRQ approach for use in the United States and then developed a proposal on how to conduct a replication effort.

The Swedish Rheumatology Quality Register system “has great potential for many chronic diseases—such as Parkinson’s disease or Crohn’s disease—anything that is inflammatory and symptomatic,” says Laura C. Leviton, PhD, senior adviser for evaluation at RWJF.

Key Findings

  • U.S. patients are becoming active partners with their health care providers in the design and management of treatment plans, using a variety of electronic information and communication tools, such as electronic patient registries and online patient networks.

  • The Swedish Rheumatology Quality Register system has had an impact on the country’s health care system. It has spread to all rheumatology clinics in Sweden and includes 84 percent of their patients with rheumatoid arthritis. SRQ is integrated with an electronic health record that covers 24 percent of the Swedish population.

  • The register has played a role in improving the efficient use of expensive medications, reducing inflammation, and reducing total hip joint replacements by 90 percent in patients with arthritis.

  • In December 2014, RWJF funded the research teams for a three-year project to incorporate elements of the SRQ model into two existing U.S. patient registries—one operated by the American College of Rheumatology and the other by the Cystic Fibrosis Foundation.  The researchers plan to evaluate the impact of this work, write case studies and a how-to guide, and document the information-technology infrastructure necessary to support an SRQ-type patient registry.

“The brilliance of the Swedish Rheumatology Quality Register was to make collection of registry data not something done only for research, or practice-based improvement, but to change the way information on each visit was collected and used.” Eugene Nelson, DSc, MPH, Director, Dartmouth Institute for Health Policy and Clinical Practice

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Interactive patient registries' decision support systems can "co-design" best individual treatment plans.

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The Swedish Rheumatology Quality Register system includes 84% of rheumatoid arthritis patients.