Sweden

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Cancer Centers

Karolinska Institute and University Hospital

Skåne University Hospital Cancer Centre

Sahlgrenska University Hospital

Uppsala University Hospital

Healthcare System

[[dct:title::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: Data Dictionary: 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: Data Dictionary: Socialstyrelsen Cancer Registry. 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: Data Dictionary: 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: Around 90,000 people per year.

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: Data Dictionary: Medicines Registry. Data dictionary information [14].

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 [15]. Instructions to request data for restricted content [16].

Information/Contact for data request: Contact information [17].

Clinical Practices Guidelines

The National Clinical Cancer Care Guidelines

Sponsor, manager or home institution: The National Clinical Cancer Care.

Primary purpose: To ensure equal and high-quality care for all patients by providing evidence-based recommendations on the investigation, treatment, nursing, rehabilitation, and follow-up of patients with cancer.

Type of information: Recommendations, treatments, rehabilitation, palliative care, quality of life and follow-up of patients with various types of cancer.

Access to information: List of guidelines [18].

Cancer-related Patient Associations and Resources

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 [19].

Latest Policymaking Initiatives

Reports: Socialstyrelsen

Sponsor, manager or home institution: Socialstyrelsen - The National Board of Health and Welfare.

Primary purpose: To publish annual statistics on newly discovered cancer cases in Sweden, including various types of cancers and, starting from 2009, basal cell cancer, as part of the country's official statistics.

Type of information: Cancer diagnostics and prognostics; Most commons cancer in Sweden; Cancer survival and mortality.

Data level: National level.

Access to information: Access Information [20]; Cancer incidence in 2021 [21]; Treatments information [22].

Report: Cancer Fonden

Sponsor, manager or home institution: Cancer Fonden.

Primary purpose: To collaborate with healthcare organizations to map and evaluate methods for increasing participation in cancer screening programs.

Type of information: Participation in the national screening programs; New cases of cervical, breast and colon cancer; Participation cancer screenings; Municipalities with the highest and lowest participation in cancer screenings; Income differences and participation in cancer screenings.

Data level: National and regional level.

Access to information: Access Information [23].

Reports: Swedish Palliative Registry

Sponsor, manager or home institution: Svenska Palliativ Registret.

Primary purpose: To improve end-of-life care for patients and their relatives by collecting data on care quality, identifying areas for improvement, and providing knowledge support for healthcare professionals, with research based on the registry's results.

Type of information: General and specialized palliative care; Quality assurance; National care plan; Indicators; Coverage; Survival and death interview; Care in numbers.

Data level: National level.

Access to information: Access Information [24].

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 [25].

Quality of Life and Palliative Care Research

List of Articles: Quality of Life [26] and Palliative Care [27].