Sweden
Cancer Centers
Healthcare System
Sweden provides universal healthcare for all its residents, and emergency care covers any patient from the EEA/EU. The system is mostly funded by local taxes, but responsibility for the healthcare system is divided between national, regional, and municipal level. The national government is responsible for regulation and supervision, counties are responsible for providing and financing healthcare products and services, and municipalities are responsible for other healthcare services such as elderly care, school and home healthcare, among others.
Most healthcare needs are covered by the universal healthcare system, with only 15% of health spending being out-of-pocket. Those are mostly for services that are not fully covered by the system such as pharmaceuticals, dental care and other outpatient care.
It is important to note that reporting for the 110 regional registries covering a variety of diseases is not mandatory.
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: Full list of variables can be found here.
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 sftp service.
Data level: Patient level.
Number of Records: Unknown.
Date Range: 1964 onwards.
Cancer Areas of Interest: All
Open data access: Data is not publicly available. Information on how to access the full database can be found here.
Information/Contact for data request: Contact information can be found here.
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: A full list of variables can be found here.
Available type of information: Number of new cases, cases per 100,000, and incidence sorted by 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 [1]
Date Range: 1970 onwards.
Cancer Areas of Interest: All.
Open data access: Data is partially publicly available. The data can be accessed here. Information on how to access the full database can be found here.
Information/Contact for data request: Contact information can be found here.
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: Age at death in years at the time of death, year of death, clinical or forensic autopsy information, examination before death in hospital information, external autopsy information, date of death, place of death, multiple causes of death according to the ICD, including ULORSAK and KAP19/KAP17 combinations, date of any eventual operation, whether surgery was performed within 4 weeks before death, underlying cause of death according to ICD, among other information. A full list of variables can be found here.
Available type of information: Number of deaths, deaths rates and deaths by 100,000 people sorted by 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: Data is partially publicly available. Data from 1969 to 1996 can be accessed here and data from 1997 onwards can be accessed here. Information on how to access the full database can be found here.
Information/Contact for data request: Contact information can be found here.
