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. Specialized outpatient care: Age at visit; Age at the end of the year; Anesthesia code 1; Anesthesia code 2; Year of visit; ATC code in case of poisoning, for medicines according to FASS (maximum 30 codes); ATC code for drug delivery, for medicines according to FASS (maximum 30 codes); Interrupted care at the emergency department; Time for medical assessment at the emergency department; Marital status of the patient; Number of reported diagnoses (may be more than 30); Diagnoses according to ICD (maximum 30 diagnoses); The patient's home district (data from Statistics Sweden); Diagnosis-related grouping, which can assume approximately 550 values; External reason code 1; External reason code 2; External reason code 3; External reason code 4; External reason code 5; External reason code 6; External reason codes 1-5; The patient's country of birth; The patient's year of birth; The patient's date of birth (numerical); The patient's date of birth (text); Stated main diagnosis; A unique serial number for each visit to a healthcare facility (used, among other things, for DRG grouping and created by the National Board of Health and Welfare); Time for the start of outpatient contact at the emergency department; Date of outpatient contact (numerical); Date of outpatient contact (text); Gender of the patient; Refers to the date on which automatic delivery control (LOK) was carried out, which takes place in connection with data providers submitting data (for each care contact, it is possible to see when this was last submitted to the National Board of Health and Welfare); Time for the start of outpatient contact at the emergency department; Date of outpatient contact (numerical); Date of outpatient contact (text); Gender of the patient; Refers to the date on which automatic delivery control (LOK) was carried out, which takes place in connection with data providers submitting data (for each care contact, it is possible to see when this was last submitted to the National Board of Health and Welfare; the variable is mainly useful for internal quality controls); Form of outpatient contact; The patient's place of registration (information from Statistics Norway); The patient's place of national registration (after checking with Statistics Sweden); The patient's place of registration according to the informant; Who submitted the data - Private healthcare provider or region; Clinic from which the patient was discharged; Diagnosis-related grouping, which can assume approximately 550 values; Medical area of activity visited by the patient; The patient's country of citizenship; Action codes (maximum 30 actions); Number of reported measures (may be more than 30); Pseudonymized social security number (created by the National Board of Health and Welfare); The patient's social security number; A variable that shows the quality of a personal identification number (PNR) according to certain predetermined rules; the variable is created using the standard macro checking; Psychiatric form of care; Indicates whether the visit was planned or not; Indicates if the patient does not have a social security number; An error list that lists registry errors by percentage distribution; Last immigration (year-month or year-month-day); Last emigration (year-month or year-month-day); Hospital at which the patient visited; Date when the register was posted; Marks whether a care contact was reported for the last time in accordance with the regulation; Time for the end of outpatient contact at the emergency department; Indicates whether the visit was an emergency visit and the type of emergency operation; Sequential number, which is the care contact's unique identification as created by the informant. Inpatient care: Age at date of discharge; Age at the end of the year; Anesthesia code 1; Anesthesia code 2; Discharge year; ATC code in case of poisoning. Medicines according to FASS. Max 30 codes; ATC code for drug delivery. Medicines according to FASS. Max 30 codes; The care allowance is regulated according to the agreement; Marital status of the patient; Number of reported diagnoses, may be more than 30; Diagnoses according to ICD. Max 30 diagnoses; The patient's home district, data from Statistics Sweden; Diagnosis-related grouping, can assume approx. 550 values; External cause code 1. See ICD code list; External cause code 2. See ICD code list; External cause code 3. See ICD code list; External cause code 4. See ICD code list; External cause code 5. See ICD code list; External reason code 1-5; The patient's country of birth; The patient's year of birth; The patient's date of birth; Stated main diagnosis; A unique serial number for each vtf. Used, among other things, for DRG grouping. Created by the National Board of Health and Welfare; The date the patient is enrolled; Number of days from the year 1960-01-01 up to and including INDATUM; The date the patient is enrolled; How the patient was enrolled; Gender of the patient; Refers to the date on which automatic delivery control (LOK) was carried out, which takes place in connection with data providers submitting data. For each care contact, it is thus possible to see when this was last submitted to the National Board of Health and Welfare. The variable is mainly useful for internal quality controls; The patient's place of registration information from Statistics Norway; The patient's place of registration after checking with Statistics Sweden; The patient's place of registration according to the informant; Who submitted the data - Private healthcare provider or region; Clinic from which the patient was discharged; Care opportunities grouped at chapter level; Medical practice area from which the patient was discharged; The patient's country of citizenship; Action codes max. 30 actions; Number of reported measures, may be more than 30; Date when action 1 was performed; Date when action 10 was performed; Date when action 11 was performed; Date when action 12 was performed; Date when action 13 was performed; Date when action 14 was performed; Date when action 15 was performed; Date when action 16 was performed; Date when action 17 was performed; Date when action 18 was performed; Date when action 19 was performed; Date when action 2 was performed; Date when action 20 was performed; Date when action 21 was performed; Date when action 22 was performed; Date when action 23 was performed; Date when action 24 was performed; Date when action 25 was performed; Date when action 26 was performed; Date when action 27 was performed; Date when action 28 was performed; Date when action 29 was performed; Date when action 3 was performed; Date when action 30 was performed; Date when action 4 was performed; Date when action 5 was performed; Date when action 6 was performed; Date when action 7 was performed; Date when action 8 was performed; Date when action 9 was performed; Pseudonymized social security number. Created by the National Board of Health and Welfare; The patient's social security number; Variable that shows the quality of a personal identification number (PNR) according to certain predetermined rules. The variable is created using the standard macro checking; Psychiatric form. 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 first day of respective week. From 1998, date refers to day person declared move to Tax Authority; Research that was basis for TNM, indicated as pathological if any of T, N, or M is based on morphological examination; clinical if only clinical examination was basis and morphological examination is missing; Tumor number in chronological order for all reportable tumors if patient was diagnosed with multiple tumors; Tumor numbers in chronological order for malignant tumors only if patient was diagnosed with multiple tumors; Illness/injury that started chain of events leading to death. 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 year at death itself; Alcohol-related diagnosis mentioned on the certificate; marking for all entries that have an alcohol-related diagnosis either as an underlying or contributing cause of death; Registration of any marking on accident during gainful employment present; The year of death; Age at death in days if the person in question has died before she/he has turned 1 month old; Age at death at the actual death in five-year age groups; Age at death in months if the person in question has died after she/he has turned 1 month but before she/he has turned 1 year; Registration of any marking on the form regarding the age of the deceased; About clinical or forensic autopsy; About examination before death in hospital; About external autopsy; About "other source" or unknown source; Diabetes as either underlying or contributing cause of death; The deceased's date of death; Place of death; Death abroad; Previous marital status; The country in which the deceased was born; The deceased's date of birth; The deceased's county of birth; The country in which the deceased was born; ICD version; Main damage when the underlying cause of death is an external cause, a code from Chapter 19 (ICD-10) is included in this variable; for ICD 7, ICD 8 and ICD 9, this information is found in chapter 17 (KAP17) instead; Sex; County, municipality where the deceased was registered at the time of death; District where the deceased was registered at the time of death; County, municipality; parish where the deceased was registered at the time of death; Multiple causes of death according to the ICD. In combination with ULORSAK and KAP19/KAP17, these include all multiple causes of death; "Drug-related diagnosis mentioned on the certificate. Marking for all entries that have a drug-related diagnosis either as an underlying or contributing cause of death." Please note that this is an old definition that is no longer used by the National Board of Health and Welfare." Nationality; Date of possible surgery; If surgery was undertaken within 4 weeks before death; The deceased's social security number; Which line and which place on the certificate did the diagnosis appear; Indicates where the deceased was registered; Base list; Underlying cause of death according to ICD; Nordic list; About examination before death outside hospital; Variable that shows the quality of a personal identification number (PNR) according to certain predetermined rules. The variable is created using the standard macro checking; Indicates that the deceased was not registered in Sweden at the time of death; Municipality where the death took place; Nationality/national registration country for deceased persons who were not registered in Sweden at the time of death; The deceased's date of death; Sex; County, municipality where the deceased was registered at the time of death; District where the deceased was registered at the time of death; The deceased's social security number; Variable that shows the quality of a personal identification number (PNR) according to certain predetermined rules. The variable is created using the standard macro checking. The deceased's date of birth; The deceased's date of birth; Age at death in year at death itself; The deceased's date of death; The year of death; Underlying cause of death according to ICD; Main damage. When the underlying cause of death is an external cause, a code from Chapter 19 (ICD-10) is included in this variable. For ICD 7, ICD 8 and ICD 9, this information is found in chapter 17 (KAP17) instead; Age at death in year at death itself; CONE; County, municipality where the deceased was registered at the time of death; Substances; Indicates that the deceased was not registered in Sweden at the time of death. 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.
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 its 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: Data is partially publicly available. Available 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.
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].
