Dutch rheumatologists have been registering since 1979, mostly for epidemiological reasons. After the turn of the century collaborations between rheumatologist emerged aiming at registering outcomes of patients with rheumatic conditions. The Dutch RhEumatoid Arthritis Monitoring (DREAM) collaboration was established in 2003 to improve the quality and efficiency of the care for rheumatic patients and to stimulate scientific research.
In 2003, DREAM started to systematically document the data of patients with rheumatoid arthritis (RA) who were treated with tumor necrosis factor (TNF) inhibitors. From the moment patients start with this expensive biological therapy, clinical and patient-reported data are registered every three months. Analyses of the data so far have shown that the right patients are being treated, that they are treated safely and that treatment outcomes are acceptable from a health-economic standpoint.
In 2006, DREAM additionally started a cohort to register the protocolized treatment of patients with early-onset RA. The aim of this so-called treat-to-target strategy is to achieve remission as soon as possible, using cheaper medications when possible and more expensive medications when necessary. Treatment is tapered or even discontinued when possible. A new cohort was started in 2011, with an adapted treatment protocol. Analyses of both cohorts show that more than 70% of the patients achieve clinical remission within one year, which is a strong improvement over usual treatment. The treat-to-target strategy also proved to be cost-effective. Despite being initially more expensive, costs were saved in the long run.
Today, the DREAM registry facilitates the monitoring of all patients with RA and the registry has evolved into a fully integrated quality management system. The system can be used to show whether treatment guidelines are being followed and quality indicators are produced for rheumatologists for purposes of benchmarking and quality improvements. International benchmarking research has shown that the outcomes of RA treatment in the Netherlands rank among the world’s best.
In 2015, dr. Frank Hoentjen (Radboudumc) and dr. Astrid van Tubergen (Maastricht UMC+) approached DREAM to develop registries and quality management systems for, respectively, inflammatory bowel disease and spondyloarthritis after the example of DREAM-RA.
Currently, the DREAM registries for rheumatoid arthritis, spondyloarthritis and inflammatory bowel disease are leading examples of optimal integration of biomedical and patient-centered data in one dedicated electronic personal health record. Outcome transparency, shared decision making and research are optimized in the DREAM approach.
The global experience of DREAM with respect to outcomes of care resulted in 2017 in the chairmanship for and publication of the standard set of outcomes that matter to patients with inflammatory arthritis.
Transparency in Healthcare B.V., a spin-off of the University of Twente, provides DREAM with technical and statistical support.