Denmark
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Healthcare System
Denmark operates a universal healthcare system that provides services to all residents, financed primarily through general and local proportional income taxes. The system is decentralized, with the Ministry of Health gradually assuming a more centralized role for overall planning and regulation.
The country is divided into five regions, each responsible for detailed health service planning and delivery in hospitals. General practitioners (GPs), mostly self-employed in private practices, form the primary care base, functioning as gatekeepers to specialist and hospital care. Residents are required to register with a GP to access these services. Almost all hospitals, which provide both inpatient and outpatient care, including 24-hour emergency care, are regionally owned and operated, with fewer than 5% of beds in private hospitals.
Municipalities shoulder the responsibility for health promotion, disease prevention, rehabilitation, home care, and non-specialized long-term care. The National health authorities set care standards and monitor quality.
Healthcare data infrastructure, managed by MedCom, is based on a unique personal identification number (CPR number). Electronic Health Records (EHRs) are widely used, allowing for seamless information sharing among healthcare providers. Claims data, registries, and EHRs facilitate research, quality improvement, and reimbursement processes.
Administrative or Claims Data
The Danish National Patient Registry (DNPR)
Primary purpose: Gather information to serve as a basis for budget calculations and statistical comparison.
Sponsor, manager or home institution: The Danish Health Data Authority.
Type of information: Data dictionary - Danish National Patient Registry.
Available type of information: Statistics on diagnosis and operations. Both data can be filtered by year, sex, age, region of residence, hospital region, hospital, and specialty. Diagnosis data presents number of stays as the only measure and also includes the filters of action diagnosis, type of admission, duration, and age grouping in psychiatry. Operations data presents number of operations and number of primary operations as measures and also includes the mode of admission filter.
Source of information: Collected monthly from mandatory public and private hospitals' reports.
Data level: Patient level.
Number of records: Nationwide coverage since 1978. Considering the period between 1977–2012, the DNPR registered 8,085,603 persons, accounting for 7,268,857 inpatients, 5,953,405 outpatients, and 5,097,300 emergency department contacts.
Cancer areas of interest: List of cancer areas of interest [4].
Date range: 1977 onwards.
Data access: Partially publicly available [5]. Instructions to request data for restricted content [6].
Contact information: Information [7].
Database: The National Health Insurance Service Register (SSR)
Sponsor, manager or home institution: The Danish Health Data Authority; Statens Serum Institut (SSI).
Type of information: Data dictionaty - SSR Denmark.
Also, it is possible to acquire more details about each patient context by linking with the National Patient Register and the Cause of Death Register data.
Source of information: Reports from the providers that are sent to The Danish Health Data Agency.
Data level: Patient level.
Date range: 1990 onwards.
Data access: Partially publicly available [10]. Instructions to request data for restricted content [11] and [12].
Contact information: Information [13] and [14].
Database: The Medicines Statistics Register (NPR)
Sponsor, manager or home institution: The Danish Medicines Agency.
Type of information: Information on prescriptions dispensed to residents of long-termcare institutions. Includes ATC codes of drugs related to cancer treatment such as antineoplastic agents, detoxifying agents used in connection with high dose treatment of antineoplastic agents, radiopharmaceuticals, and others. The ATC code for each type of drug information [18].
Source of information: Reports from pharmacies, hospital pharmacies, the Statens Serum Institut and Denmark's Food Research, and convenience stores that do not sell over-the-counter medicines reserved for pharmacies.
Data level: Patient level.
Number of records: Receives 96 million reports per year. Current total number is unknown.
Date range: 1994 onwards.
Cancer areas of interest: Unknown.
Data access: National and regional numbers information [19]. The patient-level data from this database is restricted. Instructions to request data for restricted content [20].
Contact information: Information [21].
Database: Pharmacies' sales of medicinesProperty "HasDatabase" (as page type) with input value "Database:_Pharmacies%27_sales_of_medicines_(Denmark)" contains invalid characters or is incomplete and therefore can cause unexpected results during a query or annotation process.
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Quantitative measures related to medications sales (total quantity sold, total revenue, average shipping price per unit of quantity, regions' health insurance subsidy, pharmacy's total purchase price, pharmacy's purchase price per amount, number of buyers per quarter). Includes ATC codes of drugs related to cancer treatment such as antineoplastic agents, detoxifying agents used in connection with high-dose treatment of antineoplastic agents, radiopharmaceuticals, and others. The ATC code for each type of drug information [24].
Source of information: The Medicines Statistics Register (NPR).
Data level: National level.
Number of records: Unknown.
Date range: 2018 onwards.
Data access: Publicly available [25].
Contact information: Information [26].
Database: Use of medicines during pregnancy
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Number of women who have bought the indicated medicine counted in periods before and during pregnancy by different medicines, times during pregnancy, the woman's age, and year. Includes ATC codes of drugs related to cancer treatment such as antineoplastic agents, detoxifying agents used in connection with high-dose treatment of antineoplastic agents, radiopharmaceuticals, and others. The ATC code for each type of drug information [28].
Source of information: The Medicines Statistics Register (LSR).
Data level: National level.
Date range: It is based on the year of birth, which ranges from 2001 to 2018.
Data access: Publicly available [29].
Contact nformation: Information [30].
Registries
Database: The Danish Cancer Register
Primary purpose: Collects and processes newly diagnosed cancer cases in Denmark.
Sponsor, manager or home institution: The Danish Health Data Authority.
Type of information: Data Dictionary - The Danish Cancer Register Denmark.
Open type of information: Cancer incidence, prevalence, number of tumors per 100,000 citizens, age-standardized value for the number of tumors (per 100,000 citizens), age- and sex-standardized value for the number of tumors (per 100,000 citizens).
Source of information: 1943 – 2003 on reports from hospitals and practicing specialists. From 2004 onwards, data was collected from the National Patient Register (LPR), the Danish Health Authority's Electronic Reporting System (SEI), and the National Register of Pathology (LRP).
Data level: Patient-level.
Open data level: National-level.
Date range: 1943 onwards.
Number of Records: Unknown.
Cancer areas of interest: Cancer areas of interest - The Danish Cancer Register Denmark.
Data access: Partially publicly available [37]. Instructions to request data for restricted content [38]. There are also datasets of cancer incidence and cancer survival, both detailed forward and present in the website [39].
Contact information: Information [40].
Databases Compilation: RKKP's Clinical Quality Databases
Primary purpose: Inform about the quality of Denmark's clinical treatment and contribute to improving the health care system.
Sponsor, manager or home institution: Regionernes kliniske kvalitetsprogram (RKKP).
Type of information: Quantitative indicators of cancer care quality and researches developed in the matter. The variables, cancer areas of interest, and other individual information about each database [43].
Source of information: Registered data from nationwide clinicians is managed by clinical epidemiologists and discussed by in clinical auditions to produce recommendations to increase health care quality.
Data level: Patient level.
Number of Records: 27 cancer databases as of January 2023.
Date Range: Varies.
Cancer Areas of Interest: Varies.
Data access: Publicly available [44]. Annual reports are openly available in each database's website. More specific data can be obtained following the instructions presented [45].
Contact information: Information [46].
Database: Hospital Utilization Information
Sponsor, manager or home institution: Statistics Denmark.
Type of information: Inventory of annual public and private hospital utilization, hospital admissions, outpatient care, and emergency admissions, including those related to neoplastic diagnosis related to sociodemographic factors filtered by region, diagnosis, emergency/non-emergency, age, sex, year, key figures.
Source of information: National Patient Register, which is validated by the Danish Health Data Agency.
Data level: National level.
Number of Records: Unknown.
Date range: Varies accordingly to the indicator selected.
Cancer Areas of Interest: Cancer areas of interest - Hospital Utilization Informatio Denmark.
Data access: Publicly available [49].
Contact information: Information [50].
Database: The Cause of Death Register (DAR)
Primary purpose: Make the national number of deaths by causes available to research and statistics purpose.
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Number of deaths (per 100,000 citizens, per 100,000 citizens - age-standardized -, Number of deaths per 100,000 citizens - gender and age-standardised -) filtered by geographic region, year, and diagnosis.
Source of information: Death certificates.
Data level: Regional and national level.
Number of Records: Unknown.
Date range: 1970 onwards.
Cancer Areas of Interest: Neoplasm (C00-C97).
Data access: Partially publicly available [53]. Instructions to request data for restricted content [54].
Contact information: Information [55].
Database: Cancer Survivorship
Primary purpose: Make the national number of cancer survivorship publicly available for research and statistics purpose.
Sponsor, manager or home institution: The Danish Health Data Agency.
Type of information: Cancer survival statistics in percent (relative to 1, 3, 5, and 10 years) filtered by the cancer diagnosis, survival and confidence limits, geographic region, sex, and year-periods.
Source of information: Reports from the Cancer Register and the Central Person Register (CPR).
Data level: Regional level.
Number of Records: Unknown.
Date range: 2006 onwards.
Cancer Areas of Interest: All cancers (excluding skin cancer other than mole cancer) and for men (excluding prostate cancer) and women (excluding breast cancer) [58].
Data access: Publicly available [59].
Contact information: Information [60].
Clinical Practices Guidelines
Danish Cancer Society Guidelines
Sponsor, manager or home institution: Kræftens Bekæmpelse.
Primary purpose: To provide various tools and guidelines for working with cancer rehabilitation and upgrading palliative care for cancer patients in practice.
Type of information: Information on breast cancer rehabilitation, rehabilitation for head and neck cancer, a palliation app, clinical guidance for general practice, recommendations for palliative care, and a palliative care guide with treatments, social support, checklists, etc.
Access to information: List of palliation guidelines [61] and rehabilitation guidelines [62].
Latest Policymaking Initiatives
Reports: RKKP Screenings
Sponsor, manager or home institution: Regionernes Kliniske Kvalitetsudviklingsprogram (RKKP).
Primary purpose: Aim to provide insights into healthcare treatment quality and play a vital role in enhancing the effectiveness and outcomes of the healthcare system.
Type of information: Annual cancer reports and screenings, such as cancer incidence for various cancer types.
Data level: National level.
Access to information: Access Information [63].
Report: Kræftens Bekæmpelse 2021
Sponsor, manager or home institution: Danish Cancer Society.
Primary purpose: To offer knowledge that can improve the overall quality of the cancer journey, from early interventions to supporting the growing number of Danish individuals living with and beyond cancer, ensuring a good quality of life for them.
Type of information: Include information about improving patient care, preventive measures, cancer risks, prevention, cancer during corona pandemic, cancer in numbers, screenings and diagnostics, treatments and palliative care.
Data level: National level.
Access to information: Access Information [64].
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 [65].
Reports: Annual reports on new cancer cases
Sponsor, manager or home institution: The Danish Health Data Agency.
Primary purpose: To provide the public, healthcare professionals, researchers, and policymakers with data on new cancer cases reported to the Cancer Register in Denmark.
Type of information: Number of new cancer cases; Age-standardized incidence rate; Prevalence; Trends and developments in new cancer cases.
Data level: National level.
Access to information: Access Information [66].
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; Personalised 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 [67].
Quality of Life and Palliative Care Research
List of Articles: Quality of Life [68] and Palliative Care [69].
