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Comprehensive Cancer Centres in the Netherlands

Comprehensive Cancer Centres in the Netherlands. Alex Wit, MBA/MBI Program director The Netherlands Cancer Registry. Comprehensive Cancer Centres. Nine comprehensive cancer centres in the Netherlands All incorporated in a national group Funded by the government and health insurance.

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Comprehensive Cancer Centres in the Netherlands

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  1. Comprehensive Cancer Centres in the Netherlands Alex Wit, MBA/MBI Program director The Netherlands Cancer Registry

  2. Comprehensive Cancer Centres • Nine comprehensive cancer centres in the Netherlands • All incorporated in a national group • Funded by the government and health insurance

  3. Mission The Comprehensive Cancer Centre focusses together with health professionals on optimal cancer and palliative care for patients in their region

  4. Purpose CCC’s • To provide cancer patients and their famiies access to comprehensive and high-quality cancer care as close to their home as possible • Improve treatment, patient care and clinical research • Contribute to the prevention of cancer and help to decrease the number of deaths caused by cancer

  5. The comprehensive cancer centre advises and supports in • Organisation and quality of care • Guidelines for diagnosing and treatment of cancer • Networking • Consultation for professionals • Education • Cancer registration, data management and research • Palliative care

  6. Targetgroups • Care providers: hospitals, home care organisations, nursing homes, general practitioners • Volunteers • Patient groups

  7. The Netherlands Cancer Registry Sabine Siesling, PhD Epidemiologist s.siesling@ikst.nl Head of the department of research and registration CCC Stedendriehoek Twente Chair of the Working Group of the Netherlands Cancer Registry

  8. Historical background NCR • 1955 • Start of the cancer registry in Eindhoven • 80’s • Start cancer registries in other regions • Since 1989 national cancer registry • Population: 17 Million Inhabitants

  9. The Netherlands Cancer Registry • Population-based nationwide cancer registry • Since 1989 • Main sources • Pathology Departments, the automated archive (PALGA) • Haematology Departments in the region • Radiotherapy Departments of the hospitals • the National Registry of Hospital Discharge Diagnosis (<8% clinical diagnosis) • Death certificates are not available in an identifiable form to the cancer registry

  10. Organisation Steering Group Coding Quality Use ICT Privacy

  11. Main Figures

  12. Workload • Regions: number of hospitals 5-20 • In total about 100 Registration clerks • 1989-2003: more than 1 million cancer cases in the NCR

  13. Registration application • In all 9 regions • Partly with Citrix/webbased • Under construction:

  14. Privacy legislation • CCC-hospital contracts • Care givers have to inform their patients • Flyer NCR • Objection and deletion from the NCR is possible • High quality ICT data protection

  15. Data • Patient: • Name • date of birth • gender • postal code • Tumor: • date of diagnosis • based on ... (source) • Hospital • Localization • Morfology (ICD-O) • stage (clinical and pathological TNM),

  16. Data (regional) • Diagnostics: date and source • CT • X-Thorax • MRI • PET • Treatment: date and source • Surgery • Radiotherapy • Chemotherapy • Hormonal • other

  17. Follow-up • Last date of contact • Date of death • Municipality data (>1993) • Recurrences/metastases • projects

  18. Use of the Cancer Registation • Cancer incidence www.cancerregistration.nl www.iKCnet.nl • Hospital feedback • regional • Evaluation of breastcancer screening

  19. International participations • IACR • ENCR (EUROCIM database) • EUROCHIP (health care indicators) • EUROCARE (survival) • Other registries • Nordic Countries: Finland • UK (meeting october) Data sharing + publications

  20. Specific questions from: • Care givers: specialists, nurses • Management: future budget, organisation (outpatient clinic) • Universities • Government • Ourselves

  21. Privacy rules • No patient ID, unless signed informed consent • No care giver ID • Not on hospital level • All questions: • Program director • Working Group • Committee of Privacy

  22. Examples clinical and epidemiological research • Trends in incidentie/mortality • Geografical differences • Cause of cancer • Prognostic factors and patterns of care • Quality of care • Evaluation of screening/new early detection

  23. Incidence

  24. 700 600 500 400 aantal personen (*1000) 300 200 100 0 0- 10- 20- 30- 40- 50- 60- 70- 80- 90- 2000 2015 Demografic changes in the Netherlands

  25. Main Figures incidence

  26. Main Figures mortality

  27. Mortaliteit

  28. Incidentie top 10 males

  29. Incidentie top 10 females

  30. Breast Cancer

  31. Cluster analysis mesothelioma

  32. Future • More recent data with temporary registrations (pathology based) • www.iKCnet.nl expand with stage and morfology • Guideline evaluation with (temporary) health care indicators in NCR • Diagnostic and treatment data in NCR

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