Netherlands Cancer Registry (NCR): record, report, improve and regulate

The Netherlands Cancer Registry (NCR) compiles clinical data of all individuals newly diagnosed with cancer in the Netherlands. Cancer registration clerks register newly diagnosed cancer patients since 1989 on a national basis. Over the past 30 years, this registry has provided clinicians and researchers with a wealth of clinical data (e.g., stage and primary treatment) on cancer patients of all ages. 

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With data from the NCR, IKNL enables health care professionals, policy makers and others to reflect on cancer care and prevention. Based on the PDCA cycle this proces starts with the registration, after which researchers report their findings with use of the NCR, which lead to improvement initatives and regulating, such as updated guidelines.

The need to provide information for hospitals and other healthcare institutions, professional groups and patients is increasing. Information about every patient with cancer is gathered in the Netherlands Cancer Registry (NCR); in the near future we shall expand the tumour-specific dataset. A third dataset for specific questions and research can be added to the two basic sets. More data will also be gathered about the course of the disease, thus making the NCR a continuous patient follow-up system – unique in the world.
The data in NCR+ are then reported in three domains: the public domain (science), the political domain (the Ministry of Health, Welfare and Sport, the National Health Care Institute) and the care domain (hospitals/care institutions, professionals and patients). Information is needed to support individual hospitals and care institutions in policy-making and to enable networks to be created such as Comprehensive Cancer Networks (CCNs) and consortia for palliative care.
Hence come improvement initiatives such as training - often linked to implementation programmes for guidelines, care pathways and quality frameworks, often tumour-specific and with a transmural focus. Every improvement requires change. IKNL helps to shape these changes and to introduce them to the shop floor sustainably. The effect of all the improvement initiatives is evaluated in NCR+. A good information system is indispensable for research, for assessing the importance and use of guidelines, for good, responsible application of new medicines and treatment strategies, and for carrying out patient-related research. IKNL responds to developments in the field by shifting its focus from institutional to transmural and regional and also from a general to a tumour-specific approach to oncological care.

Guidelines are deployed to improve quality and efficiency and to reduce unwanted variation in care. The evidence-based guidelines and standards determine what care may be delivered, where and by whom. This obliges institutions to make policy choices and create networks. In turn, this leads to a concentration and spreading of oncological care, the creation of regional and local oncological and palliative partnerships and a need to re-orientate the organisation of care. Transmural and tumour-specific care pathways support this re-orientation, and consultants match their services to this.

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Any questions? Please contact IKNL
t 088 234 60 00

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