Sweden
Cancer Centers
Healthcare System
Sweden operates a universal healthcare system, providing coverage for all residents, irrespective of nationality, and emergency care for EU/EEA patients and countries with bilateral agreements. The system is mainly funded through local taxes and national government contributions via general grants and specific programmes.
The healthcare responsibility is decentralized between the national government, 21 regions, and 290 municipalities. The Ministry of Health and Social Affairs sets the overall health policies, while healthcare delivery is managed by the regions and municipalities. Regions oversee primary, specialist, and psychiatric care, and public and private hospitals. Municipalities handle elder care, care for the physically and mentally disabled, rehabilitation, school healthcare, home care, and social care.
Residents receive a wide range of benefits including preventive care, check-ups, immunization, medication, hospitalization, maternity, mental health services, and children's dental care. About 15% of health spending comes from out-of-pocket payments, mainly for pharmaceuticals, dental care, and other outpatient care.
To access these benefits, one must be a resident of Sweden. The system also offers the choice of primary care provider, either public or private, accredited by the local county council. There's a patient fee for certain services but it's capped annually, and certain groups receive completely free healthcare.
Sweden's healthcare data management uses electronic health record systems, with data interoperable across different providers. National health data registries are used for monitoring care quality, resource planning, and research while ensuring patient privacy is protected by law.
Administrative or Claims Data
Database: Socialstyrelsen National Patient Register
Sponsor, manager or home institution: Socialstyrelsen.
Primary purpose: The patient register serves multiple purposes. One of its main functions is to track the health development of the population over an extended period. In doing so, it helps to improve the possibilities of preventing and treating diseases. Additionally, the patient register contributes to the overall development of healthcare by providing valuable data and insights. It also enables healthcare providers to monitor the quality of their operations and identify areas where improvements may be needed.
Type of information: Type of Information: Socialstyrelsen National Patient Register. Full list of variables [1].
Source of Information: Healthcare providers must submit patient information to the patient register monthly, including hospital code and medical area. Data is submitted via a reporting portal or register service.
Data level: Patient level.
Number of Records: Unknown.
Date Range: 1964 onwards.
Cancer Areas of Interest: Unknown.
Open data access: Not publicly available. Instructions to request data for restricted content [2].
Information/Contact for data request: Contact information [3].
Registries
Database: Socialstyrelsen Cancer Registry
Sponsor, manager or home institution: Socialstyrelsen.
Primary purpose: To map the occurrence and change of cancer diseases over time.
Type of information: Age of patient at diagnosis; Year of diagnosis; Indicator of malignant or benign tumor based on morphology; Basis for cause of death statement, either clinical or forensic autopsy; Date diagnosis was established; Type of examination that formed basis of diagnosis; Date patient died, information from cause of death register; Tumor spread at time of diagnosis for gynecological tumors; Patient's date of birth; Patient's place of registration at time of diagnosis, forwarded to January 1 of last year; Error code for projecting patient's place of registration; Location of tumor according to ICD-7 codes for leukemias and lymphomas according to ICD-8 during entire period (1958-); Tumor location according to ICD-9; Tumor location according to ICD-O/2 (with some elements of ICD-10); Tumor location according to ICD-O/3; Information taken from A-form that was basis for hospital and diagnosis coding (may be blank); Clinic where patient's diagnosis was established; Patient's gender; Patient's place of registration at time of diagnosis; Tumor spread at time of diagnosis, distant metastases; Tumor spread at time of diagnosis, lymph nodes; Tumor identified at autopsy; Histopathological diagnosis of tumor according to C24.1; Diagnostic pathology and cytology department; Patient's social security number; Variable showing quality of personal identification number (PNR), created using standard macro checking; Number of histopathological preparation including year; Healthcare region; Side indication for paired organs; Healthcare facility where diagnosis was established; Morphological diagnosis of tumor according to ICD-O/3; Morphological diagnosis of tumor according to ICD-O/2; Tumor spread at time of diagnosis, tumor size; Week when move was announced until 1997. Statistics Sweden has translated year and week into the first day of the respective week. From 1998, the date refers to the day person declared move to Tax Authority; Research that was the basis for TNM, indicated as pathological if any of T, N, or M is based on morphological examination; clinical if only clinical examination was the basis and morphological examination is missing; Tumor number in chronological order for all reportable tumors if the patient was diagnosed with multiple tumors; Tumor numbers in chronological order for malignant tumors only if the patient was diagnosed with multiple tumors; Illness/injury that started a chain of events leading to death. Full list of variables [4].
Available type of information: Number of new cases; Cases per 100,000; Incidence; Age; Sex; Cancer area, and year.
Source of Information: The data is sent from hospitals to six regional cancer centers for coding and registration. Once the material has been verified, it is then transmitted to the National Board of Health and Welfare to become part of the cancer registry. The registry is updated annually.
Data level: Patient level.
Available data level: Regional and national level.
Number of Records: 60,000 cases registered every year [5].
Date Range: 1970 onwards.
Cancer Areas of Interest: All.
Open data access: Partially publicly available [6]. Instructions to request data for restricted content [7].
Information/Contact for data request: Contact information [8].
Database: Socialstyrelsen Cause of Death Registry
Sponsor, manager or home institution: Socialstyrelsen.
Primary purpose: To describe the causes of death and track mortality trends in Sweden.
Type of information: Type of information: Socialstyrelsen Cause of Death Registry. Full list of variables [9].
Available type of information: Number of deaths; Deaths rates and deaths by 100,000 people; Diagnosis; Age; Sex and region.
Source of Information: The death certificates are sent by doctors to the Tax Agency or the Police, and then are sent to the Socialstyrelsen.
Data level:Patient level.
Available data level: Regional and national level.
Number of Records:
Date Range: 1969 onwards.
Cancer Areas of Interest: All.
Open data access: Partially publicly available. Data from 1969 to 1996 information [10] and data from 1997 onwards information [11]. Instructions to request data for restricted content [12].
Information/Contact for data request: Contact information [13].
Database: Medicines Registry
Sponsor, manager or home institution: Socialstyrelsen.
Primary purpose: The objective of the pharmaceutical registry is to enhance patient safety within the pharmaceutical industry.
Type of information: Social security number: a personal identification number (PNR) according to certain predetermined rules; Quality of social security number: a variable that shows the quality of the PNR; Age at the end of the year: calculated as year of expedition minus year of birth; Sex; Patient's place of registration at the time of dispatch: county, municipality, and parish (only counties and municipalities from 2016); Patient's place of registration at the time of dispatch: county and municipality; Date of shipment: date when the patient bought the item; Date of prescription: date when the prescription was issued; Start date for current high cost period; Patient's accumulated co-payment before dispatch: sum of co-payments that the patient has paid during the ongoing high-cost period (only costs within the pharmaceutical benefit are included in input); Billing period: year and month in which the shipment was invoiced; Order type/sales method: indicates how the product has been prescribed; Transaction type: indicates how the item has been prescribed (coarser categories of non-type); Origin of the prescription: how the prescription arrived at the pharmacy; Type of benefit within the framework of the pharmaceutical benefit: goods defined as "within the benefit" are discounted according to the benefit ladder; Starter pack: indicates whether the patient has received a starter pack or not; Flag indicating whether a change of the prescribed item to a medically equivalent alternative at the pharmacy is allowed or not; Code indicating the type of change that has taken place during dispatch, from the prescribed drug product to a generic drug, alternatively to a parallel imported or parallel distributed drug (only filled in if a change has taken place); Product type; Number of packages that have been picked up: for dose-dispensed medicines, the number of packages can be a decimal number; Prescribed number of packages, if this differs from the dispatched number. Dosage text: free text containing information on dosage, use, and purpose; Patient's cost (excluding VAT): calculated as total cost minus benefit-cost; Benefit cost/County cost (excluding VAT): amount that the county council pays for goods included in the pharmaceutical benefit; Total cost (excluding VAT): includes both the part that the patient himself pays and the part that the county council pays; VAT rate: commercial goods etc. 25%, food 12%, pharmaceuticals 0%; Additional cost (excluding VAT): amount the patient has to pay if he/she chooses a drug other than the cheapest equivalent alternative; Price per pack, including VAT; Issuer category code/prescriber category code: the pharmacy's code for occupational. Data dictionary can be found here.
Available type of information: Drug groups and ATC codes for all ages, drug groups for children 0-17 children; filtered by annual data, monthly data divided by age, monthly data divided by region, drug groups, ATC codes, regions, sex, measure, year and month.
Source of Information: The pharmaceutical register exclusively obtains data from the E-health authority, which requires all pharmaceutical trades to report their sales data. When a prescribed medication is dispensed, pharmacies must also furnish supplementary information to the E-health authority. The E-health authority, in turn, forwards information regarding prescription-based shipments to the National Board of Health and Welfare.
Data level: Patient level.
Available data level: National and regional level.
Number of Records: About 100 million per year.
Date Range: 2005 onwards.
Cancer Areas of Interest: Unknown.
Open data access: Partially publicly available [14]. Instructions to request data for restricted content [15].
Information/Contact for data request: Contact information [16].
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 [2].
