The Netherlands
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Cancer Centers
Netherlands Cancer Institute - Antoni van Leeuwenhoek
The Maastricht UMC+ Comprehensive Cancer Center
University Medical Center Groningen Comprehensive Cancer Center
Healthcare System
The Netherlands employs a three-tiered system of healthcare funding: 1) a social insurance system for curative care operated by competing private insurers; 2) a single-payer social insurance for long-term care; 3) a tax-funded social care system implemented by municipalities. This structure ensures broad universal healthcare coverage for all residents.
The Ministry of Health, Welfare, and Sport oversees the system. The Dutch Healthcare Authority regulates and sets healthcare prices. Health Insurance Board manages health insurance funds. Local authorities play a key role in the social care system, aiding in public health and social support.
Residents have broad access to healthcare benefits, including GP services, medical specialists, hospital care, mental healthcare, maternity care, pharmaceuticals, medical aids, and some allied care services. The social care system supports housekeeping, help with daily activities, and sheltered living, and long-term care insurance covers intensive, continuous care.
All residents and workers in the Netherlands must have standard health insurance. Insurance companies must accept every resident in their coverage area. The Netherlands operates a strict gatekeeper system; a referral from a GP is necessary for hospital and specialist care. Premiums are income-dependent, with allowances for low-income groups.
The Netherlands boasts a comprehensive digital healthcare infrastructure. EHR systems are widely used among GPs, pharmacists, hospitals, and other healthcare providers. The national exchange point (Landelijk Schakelpunt or LSP) allows secure exchange of medical data among healthcare providers. Specific registries exist for certain diseases and interventions, ensuring high-quality data for monitoring, research, and quality improvement.
Administrative or Claims Data
Database: National Basic Register of Hospital Care (LBZ)
Primary purpose: Reunite administrative, financial, and medical data from hospitals all around the Netherlands, facilitating policymaking and research processes.
Sponsor, manager or home institution: Dutch Hospital Data Foundation (DHD).
Type of information: Data dictionary - National Basic Register of Hospital Care (LBZ).
There are other resources available:
- The Oncological Care Monitor: it is a partnership between the Netherlands Cancer Registry (NKR) and the National Basic Register of Hospital Care (LBZ). It aims to increase the availability of information about the treatments used in each type of cancer diagnosis and the number of diagnoses for each region by combining data from the two databases. Also, there is information about palliative care and care in the last phase of life of cancer patients who died in hospital. These informations are very useful for hospitals to compare their methods and numbers with other hospitals in different regions or with the national average [3].
Source of information: Hospital's reports.
Data level: Patient-level.
Number of Records: Unknown.
Date range: Data referring from 1991 to 2013 are from the Dutch Medical Registration (LMR) and are also available in the registry. The National Basic Register of Hospital Care (LBZ) replaced this entity and offers standardized data from 2014 on.
Cancer Areas of Interest: Unknown.
Data access: Not publicly available. Instructions to request data for restricted content about patient-level [4]. Instructions to request data for restricted content about the Oncological Care Monitor [5]. It is also possible to register for a demo of the Oncological Care Monitor [6].
Contact information: Information [7].
Registries
Database: Netherlands Cancer Registry (NKR)
Primary purpose: Registry and monitor cancer statistics around the Netherlands.
Sponsor, manager or home institution: Comprehensive Cancer Center of the Netherlands (IKNL).
Type of information: The type of information available to each type of cancer at patient level [10] and type of treatment given.
Available type of information: Incidence; Count, crude rate per 100,000 persons per year; European Standardized Rate (ESR) per 100,000 persons per year; World Standardized Rate (WSR); Revised European Standardized Rate (RESR); Type of cancer; Gender; Age; Region; Year; Prevalence; Mortality; Survival: relative survival; Period from diagnosis (1 year and 10 years); Age at time of diagnosis; Stage at time of diagnosis (TNM).
Also, there is a cancer atlas that informs of the incidence of cancer in each region of the Netherlands in the period of 2011–2020 and compares it to the Dutch average. This information can be selected by type of cancer, region, and gender.
Source of information: Hospitals' reports.
Data level: Patient level.
Available data level: Regional level.
Number of Records: Contains information about all new cases of malignant neoplasms and some benign neoplasms (tumors of the central nervous system, borderline tumors of the ovary, and AL amyloidosis) in the Netherlands.
Date range: Varies according to the diagnosis and the type of information [11].
Cancer Areas of Interest: Regional data includes all invasive cancers except basal cell carcinoma of the skin.
Data access: Partially publicly available [12]. Instructions to request data for restricted content [13]. The cancer atlas access [14].
Contact information: Information [15].
Database: Mortality by Cause of Death
Primary purpose: Publish data concerning the number of deaths in the territory.
Sponsor, manager or home institution: Centraal Bureau voor de Statistiek.
Available type of information: Number of deaths in the population of the Netherlands; Main underlying cause of death (extensive list of 'three digit codes'); Age; Gender; Year; Deceased; Leading causes of death; Region.
Source of information: Declaration of the cause of death and Basic personal registration (BRP) are sent from regional hospitals to the statistical organization.
Data level: Patient level.
Available date level: National and Regional level.
Number of Records: Unknown.
Date range: 1996 onwards (national and regional level) and 1995 onwards (patient level).
Cancer Areas of Interest: Total neoplasms (C00-D48); Total malignant neoplasms (C00-C97); Malignant neoplasms of lip, oral cavity and pharynx (C00-C14); Malignant neoplasms of oesophagus (C15); Malignant neoplasms of stomach (C16); Malignant neoplasms of colon (C18); Malignant neoplasms of rectum, rectosigmoid and anus (C19-C21); Malignants neoplasms of liver and intrahepatic bile ducts (C22.0 - C22.8); Malignant neoplasms of galbladder and bile ducts (C23-C24); Malignant neoplasms of pancreas (C25); Malignant neoplasms of larynx (C32); Malignant neoplasms of trachea, bronchus and lung, Trachea (windpipe) including branchings (C33-C34); Melanoma skin (C43); Malignant neoplasms of breast (C50); Malignant neoplasms of cervix uteri (C53); Malignant neoplasms of corpus uteri and uterus unspecified (C54-C55); Malignant neoplasms of ovary (C56); Malignant neoplasms of prostate (C61); Malignant neoplasms of kidney, except renal pelvis (C64); Malignant neoplasms of bladder (C67); Malignant neoplasms of lymphoid, heamatopoietic and related tissue (C81-C96); Other malignant neoplasms (C17, C22.9, C26-C31, C35-C41, C44-C49, C51-C52, C57-C60, C62-C63, C65-C66, C68-C80, C97); Other neoplasms (D00-D48) [17].
Data access: Partially publicly available. National level data access [18]. Regional level data access [19]. Instructions to request data for restricted content [20].
Contact information: Information [21].
Database: Registry of Histo and Cytopathology
Primary purpose: Provides organized pathology data to enhance the quality of diagnosis, treatment, and patient safety. Also facilitates scientific study.
Sponsor, manager or home institution: the Pathological Anatomical National Automated Archive (PALGA).
Available type of information: Number of diagnostics; Type of disease (includes neoplasms); Gender; Year; Age; Type of examination (cytology or histology). To facilitate the search process for cancer terms, the main thesaurus codes used are listed in the document [23].
Type of information: Report identification (laboratory number, year, type of study, pa number, and date of receipt of study material at the laboratory); Patient data (pseudonymized patient identification, gender, and age); Conclusion (conclusion in pathology report: free text or automatically generated from protocolized reporting module); Diagnosis lines (one or more lines, consisting of diagnostic terms from the thesaurus, prepared according to fixed structure); Additional report data [kopacb code (diagnosis coding in cervical cytology), fields from standardized reporting module (e.G. Number of lymph nodes for colon carcinoma, grading in mammary carcinoma, etc.), clinical data, microscopy, macroscopy and epicrise].
It is possible to integrate data from the Netherlands Cancer Registry (NKR) and this pathology registry. This adjustment makes the investigation much richer in information since it permits the researcher to have more information on each case. It is useful to obtain pathology history, information about sections or tissues, follow-up, and additional information about tumors from the NKR [24].
Source of information: Daily or weekly pathology reports from laboratories around the Netherlands.
Data level: Patient-level.
Available data level: National-level.
Number of Records: Since 2017, when there were more than 72 million pathology results stored, the number of registries has increased by approximately 2 million each year.
Date range: 1971 onwards. The registry has had nationwide information since 1991.
Cancer Areas of Interest: All types of cancer [25].
Data access: Partially publicly available [26], [27]. Instructions to request data for restricted content [28].
Contact information: Information [29].
Databases for Clinical Trials, Surveys and Biobanks
Survey: National Population Surveys: Screenings for breast, cervical and colon cancer
Sponsor, manager or home institution: National Institute for Public Health and the Environment.
Primary purpose: To inform data about the participation of the population in screenings for breast, cervical and colon cancer.
Type of information: The participation percentage; Age; Age class; Year.
Source of Information: The sources come from the Dutch Cancer Registry (NKR) of the Integrated Cancer Center of the Netherlands (IKNL) and supplied by the Center for Population Research (CvB) of the National Institute for Public Health and the Environment (RIVM).
Data level: Respondent level.
Available data level: National level.
Number of Records: Unknown.
Date Range: Breast cancer: 2000; Cervical cancer: 2004; Colon cancer: 2014.
Cancer Areas of Interest: Breast Cancer (C50), Cervical Cancer (C53), and Colon Cancer (C18-C20).
Data access: Publicly available [30]. Manual how to open the data in More information section [31].
Contact information: Information in Contact point [32].
Clinical Practices Guidelines
Compilation: IKNL Guidelines
Sponsor, manager or home institution: Integraal Kankercentrum Nederland.
Primary purpose: To provide access to oncological guidelines, stored in various databases according to professional groups, aiming to support optimal clinical decision-making, ensure up-to-date treatment advice, and improve the quality of cancer care in the Netherlands.
Type of information: Epidemiology, diagnostics, treatments and follow up of various types of cancer.
Access to information: List of guidelines [33].
Guidelines for Palliative Care
Sponsor, manager or home institution: Integrated Cancer Center Netherlands.
Primary purpose: To provide the latest evidence-based insights on diagnosis and treatment in palliative care, with input from professionals nationwide.
Type of information: Quality framework for pediatric palliative care; Depression; Fever; Nausea and vomiting; Pain in cancer patients, among other.
Access to information: List of guidelines [34].
Latest Policymaking Initiatives
Reports: IKNL
Sponsor, manager or home institution: Integraal Kankercentrum Nederland.
Primary purpose: To provide reliable data on all cancer patients for research to improve healthcare.
Type of information: Cancer in the Netherlands, trends and forecasts; Oncology networks; Cancer in young adults; Meningiomas in the Netherlands; Stomach and esophageal cancer; Pancreatic cancer in the Netherlands; Prostate cancer in the Netherlands; Hemato-oncological care in the Netherlands; Imaging metastatic cancer; Sarcoma care in the Netherlands; Report on Primary Tumor Unknown; Skin cancer in the Netherlands; Breast cancer in the Netherlands; Figures on bladder cancer; Cancer care in the picture: about living with and after cancer; Rare cancers; Quality of life of cancer patients; Cancer treatments.
Data level: National level.
Access to information: Access Information [35].
Reports: Palliaweb
Sponsor, manager or home institution: Integraal Kankercentrum Nederland; Fibula Foundation; Palliative Care Netherlands (PZNL).
Primary purpose: To focus on the organization of palliative care and facilitate partnerships to provide everyone with the best possible palliative care.
Type of information: Palliative care consulting; Consultants; Quality indicators; Infograph of consultation services in palliative care; The roles and functions of specialized healthcare; The future of palliative care.
Data level: National and Regional level.
Access to information: Access Information [36].
Report: Breast cancer screening program
Sponsor, manager or home institution: Integraal Kankercentrum Nederland.
Primary purpose: To detect breast cancer early, leading to better prognosis, and it is coordinated by the RIVM, with annual monitoring by IKNL to ensure program quality and identify trends and bottlenecks.
Type of information: The number screened in the reporting year; Invitations, participation rate and referrals; Incidence and mortality rates.
Data level: National level.
Access to information: Access Information [37].
Report: EU Country Cancer Profile 2023
Sponsor, manager or home institution: OECD and European Commission.
Primary purpose: To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.
Type of information: National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.
Data level: National level.
Access to information: Access Information [38].
Initiative: National Action Plan for Cancer & Life
Sponsor, manager or home institution: Cancer Survivorship Care Taskforce.
Primary purpose: To improve care for individuals living with or after cancer in the physical, psychological, and social aspects.
Data level: National level.
Access to information: Access Information [39].
Compilation: ESMO Patient Guides
Sponsor, manager or home institution: European Society for Medical Oncology
Primary purpose: To translate complex medical language into understandable information for patients.
Available guides: Bone Health in Cancer; Cancer Care During the COVID-19 Pandemic; Cancer Pain Management; Immunotherapy Side Effects; Personalized Cancer Medicine; Survivorship; AML; Biliary Tract Cancer; Bladder Cancer; Bone Sarcoma; Breast Cancer; Cervical Cancer; CML; Colorectal Cancer; Endometrial Cancer; Follicular Lymphoma; Glioma; Head and Neck Cancer; Hepatocellular Carcinoma; Multiple Myeloma; Non-Small-Cell Lung Cancer; Oesophageal Cancer; Ovarian Cancer; Pancreatic Cancer; Prostate Cancer; Soft Tissue Sarcoma; Stomach Cancer; Testicular Cancer.
Type of information: Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.
Access to information: List of guides [40].
