The impact of rheumatic diseases on quality of life is impressive. Functional impairment, productivity loss, and healthcare costs due to rheumatic disease belong to the top. The introduction of biologicals especially TNF blockers have changed the disease outcome of our patients. Evenmore, improved treatment strategies, aiming at induction of remission, stable remission and drug free remission have changed the prognosis of patients. New indications and new targets for innovative medications have on the one hand changed the focus of rheumatology from care to cure, but on the other hand have changed or health care from high volume low costs care to high volume high costs.
In the good tradition of Hippocrates each physician aims the best for his patients. However, can the patient be sure that his physician is providing the best quality of care? And when high costs are involved can the payer be sure that quality of care is in balance with costs? Finally, has the health professional access to feedback to be sure that he is providing the best care to actual standards?
As we speak in many healthcare systems transparency of quality of care is aimed for in low volume high costs care, like oncology. Some systems are already running for many years and common problems are: manpower, costs, privacy and insufficient interaction between, patient, professional and registry. In rheumatology/immunology especially the introduction of biologicals has led to registries of patients using these expensive drugs. All registries have problems with quality and completeness of data. The experiences with registries have taught that where RCTs can reveal and illustrate the efficacy of interventions, only phase 4 registries are able to reveal effectiveness of interventions.
In the Netherlands rheumatologists have initiated a registry for RA patients called the DREAM registry. This registry has initiated collaboration with the technical University of Twente resulting in a ICT supported system, where in day-to-day healthcare, professionals, patients and phase 4 registries are combined. The system supports each group resulting in patients having access to their individual dossier; professionals having an overview of quality of care in individual patients but also of the quality of care of his clinic and benchmark information. Finally the system provides the information necessary for phase 4 resaerch including healtheconomical analysis. In this lecture the principle components of the system will be shown and explained. The introduction of contemporary tailor-made software applications as resulted in the extension of the DREAM registry form RA to multiple indications in rheumatology.
Disclosure of Interest M. Van De Laar Shareholder of: Transparency-in-Healthcare bv