THE DUTCH MELANOMA TREATMENT REGISTRY AS BLUEPRINT FOR USING REGISTRY DATA TO IMPROVE HEALTH CARE DECISION MAKING

Author(s)

Franken M1, Leeneman B1, Schouwenburg M2, Jochems A3, Wouters M4, Van den Eertwegh F5, Haanen J4, Van der Hoeven K3, Uyl - de Groot C1
1Institute for Medical Technology Assessment, Erasmus University, Rotterdam, The Netherlands, 2Dutch Institute for Clinical Auditing, Deventer, The Netherlands, 3Leiden University Medical Center, Leiden, The Netherlands, 4Netherlands Cancer Institute, Amsterdam, The Netherlands, 5VU University Medical Center, Amsterdam, The Netherlands

OBJECTIVES: The Dutch minister of health made reimbursement of the first new melanoma drug conditional on the set-up of a population-based registry and centralisation of care. This led in 2012 to well-defined quality standards and the Dutch Melanoma Treatment Registry (DMTR) characterised by its unique collaboration between all stakeholders involved in melanoma care (public and private partnership). The DMTR aims to enhance real patient value by closing the gap of the initial uncertainty regarding the real-world value of promising drugs in everyday practice. METHODS: The DMTR prospectively documents detailed data of all Dutch advanced melanoma patients regarding tumour- and patient characteristics, treatment strategies, clinical, physical, social, emotional and well-being outcomes, resource use, informal care, and productivity losses. These data are used for benchmarking and outcomes research to obtain insights into real-world cost-effectiveness of treatment pathways to improve health decision making. RESULTS: The richness of DMTR data facilitates the assessment of multiple outcomes including quality of care, use of drugs, survival benefit, quality of life, costs and cost-effectiveness. Physicians are fortnightly provided with feedback on their delivered quality of care; manufacturers are provided with information regarding the use and performance of their drugs. This greatly enhances learning regarding the use and outcomes of treatments. First results (stage IV: N=1226; median follow-up 12.8 months) show an improved survival (2012-2015: median OS 9.3 months [IQR:4.5-17.4], one-year survival rate 40%) compared to the period before the introduction of the new drugs (2003-2011: median OS 6.8 months [IQR:3.3-18.5], one-year survival rate 33%). CONCLUSIONS: The DMTR provides crucial information regarding the extent to which novel treatments offer real-world value and whether scarce resources are spent cost-effectively in everyday practice. Its unique design emphasises the essential holistic view needed in cancer management and can be seen as blueprint for other registries aiming at improving health decision making.

Conference/Value in Health Info

2015-11, ISPOR Europe 2015, Milan, Italy

Value in Health, Vol. 18, No. 7 (November 2015)

Code

PCN344

Topic

Study Approaches

Topic Subcategory

Registries

Disease

Oncology

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