Finland
Cancer Centers
Healthcare System
Finland has a universal healthcare system funded by taxes. The Ministry of Social Affairs and Health is responsible for health regulations and assessment countrywide, while municipalities are responsible for providing access to health services at all levels of care. From the public health expenditure, what isn't covered by the national and local taxes is funded by the National Health Insurance and managed by Kela (in English: The Social Insurance Institution (SII)).
Administrative or Claims Data
Database: Care Register for Health Care
Primary purpose: Collect data on the activities of health centres, hospitals and other institutions providing inpatient care and on the clients treated in them as well as on home-nursing clients for the purposes of statistics, research and planning.
Sponsor, manager or home institution: Finnish Institute of Health and Welfare.
Type of information: Data Dictionary: Care Register for Health Care. More information about the data contained in the dataset can be found here.
Source of Information: Data is sent by healthcare providers nationwide.
Data level: Patient level.
Number of Records: Unknown.
Date Range: 1969-1993.
Cancer Areas of Interest: Unknown.
Open Data Access: Data is not publicly available. More information can be found here.
Information/Contact for data request: Information on how to access data can be found here.
Database: Kelasto - Medical Benefits
Primary purpose: Promote the use and exchange of information by compiling key statistical information, in this case information about insurance claims.
Sponsor, manager or home institution: Kela (in English: The Social Insurance Institution (SII)); Parliament.
Type of information: The number of persons who received compensation from specialists' fees; The number of reimbursed specialist visits. The figures also include the number of doctor's opinions and prescriptions (not made through pharmacies); Euro amounts of fees collected from specialist visits and medical reimbursements paid for them; Compensation percentage. The number tells the percentage paid to the insured as health insurance compensation of the collected medical fees; Ratio cost (=charges collected) per visit; Medical Specialties, Reference period and geographical focus.
Source of Information: Healthcare customers send data from claims for benefits and job applications.
Data level: National, regional and hospital district level.
Number of Records: Unknown.
Date Range: 2016 onwards.
Open data access: Data is partially publicly available. Information can be found here.
Information/Contact for data request: Information on how to access the data can be found here.
Registries
Database: Finnish Cancer Registry
Primary purpose: Assess the causes and impacts of cancer burden and the effectiveness of cancer screening programmes in the population.
Sponsor, manager or home institution: Cancer Society of Finland.
Type of information: Data on cancer screenings, cancer incidence, deaths due to cancer, risk of developing cancer, persons alive with past diagnosis, prognosis of cancer patients.
Data Dictionary: Finnish Cancer Registry
Data Dictionary: Cervical Cancer Screening
Data Dictionary: Breast Cancer Screening
More information about the data contained in the database can be found here.
Available type of information: Cancer incidence, deaths due to cancer, risk of developing cancer, persons alive with past diagnosis, prognosis of cancer patients; sorted by sex, region, cancer site, year and values.
Source of Information: Health organizations provide information on every case or strong suspicion of cancer detected in Finland to the Cancer Registry of the National Institute for Health and Welfare, which is maintained by the Finnish Cancer Society.
Data level: Patient level.
Available data level: Regional level.
Number of Records: Unknown.
Date Range: 1953 onwards.
Cancer Areas of Interest: All sites (C00-96, D09.0-1, D32-33, D41-41, D45-47, D76); malignant neoplasm of lip (C00); tongue (C02); Salivary glands (C07-08); mouth, other or unspecified (C03-06); pharynx (C01, 09-14); oesophagus (C15); stomach (C16); small intestine (C17); colon (C18); Rectum, rectosigmoid (C19-20); anus (C21); primary malignant neoplasm of liver and intrahepatic bile ducts (C22); malignant neoplasm of gallbladder, bile ducts (C23-24); pancreas (C25); digestive organs, other and unspecified (C26); nose, sinuses (C30-C31); larynx, epiglottis (C32); lung, trachea (C33-C34); other or unspecified respiratory or intrathoracic organs (C37-C39); bone (C40-41); melanoma of the skin (C43); skin, squamous cell carcinoma (C44); skin, other (C44); mesothelioma (C45); peripheral nerves, autonomic nervous systems (C47); soft tissues (C48-49); breast (C50); vulva (C51); vagina (C52); cervix uteri (C53); corpus uteri (C54); ovary etc. (C56, C57.0-4, C48.1-2 Serous); placenta (C58); female genital, other and unspecified (C55, C57.5-9); penis (C60); prostate (C61); testis (C62); male genital, other and unspecified (C63); kidney (C64); bladder and urinary tract (C65-68, D09.0-1, D41.1-9); eye (C69); brain, meninges and central nervous system (C70-72, D32-33, D42-43); thyroid gland (C73); adrenal gland (C74); other endocrine glands (C75); ill defined or unknown (C76, C80); hodkin lymphoma (C81); follicular B lymphoma (C82); chronic mantle cell lymphoma (C83.1); diffuse B lymphoma (C83.3); burkitt's lymphoma/leukemia (C83.7); marginal zone lymphoma (C83.8); mature T-cell neoplasias of the skin (C84.0-1); other T and NK cell lymphomas/leukemias (C84.3-5); non-hodgkin lymphoma, other or unspecified (C85); malignant immunoproliferative diseases (C88); myeloma and other plasma cell tumors (C90); acute lymphoblastic leukemia/lymphoma (C91.0); lymphatic leukaemia (C91.1); acute myeloid leukaemia (C92.0); chronic myeloid leukaemia (C92.1); leukaemia, other or unspecified (C95); histiocytic and denritic cell neoplasms (C96.1, D76); mastocystosis (C96.2); other, unspecified or mixed hematological disease (C96.7-9); other mature B-cell neoplasms (D45-47, D76).
Open data access: Partially publicly available data. Available data can be found here.
Information/Contact for data request: Information on how to access the database can be found here.
Database: Statistics Finland - Cause of Death
Primary purpose: Provide publicly available information on causes of death.
Sponsor, manager or home institution: Statistics Finland; Ministry of Finance.
Type of information: Data Dictionary: Causes of death - research data
Information about the data contained in the database can be found here.
Available type of information: Deaths by underlying cause of death, age, sex, and county.
Source of Information: Death certificates and data from the Population Information System.
Data level: Patient level.
Available data level: Regional level.
Number of Records: Unknown.
Date Range: From 1969 onwards.
Cancer Areas of Interest (ICD-10): Neoplasms (C00-D48); malignant neoplasms (C00-C97); malignant neoplasm of lip, oral cavity and pharynx (C00-C14); oesophagus (C15); stomach (C16); colon (C18, C19); rectum, anus and anal canal (C20-C21); primary malignant neoplasm of liver and intrahepatic bile ducts (C22); malignant neoplasm of pancreas (C25); larynx, trachea, bronchus and lung (C32-C34); malignant melanoma of skin (C43); breast (C50); cervix uteri (C53); uterus (C54-C55); ovary (C56); prostate (C61); kidney (C64); bladder (C67); lymphoid, haematopoietic and related tissue (C81-C96), other malignant neoplasms; other neoplasms (D00-D48)
Open data access: Partially publicly available data. Information can be found here.
Information/Contact for data request: Information on how to access the data can be found here.
Database: Register of Primary Health Care Visits
Primary purpose: Provide data on outpatient primary care for statistics, research, development and planning, and also to monitor infectious diseases, injuries, and health examinations.
Sponsor, manager or home institution: Finnish Institute of Health and Welfare.
Type of information: Data content of the register: Service provider in the service event; client contact by client; assessment of the need for treatment; appointment data; data on the content of the service event, such as reason for visit, procedures, and follow-up care. Data content of the care notification to the Register of Primary Health Care Visits - Basic data about the service event: Client's personal identity number (encrypted in the register); Client's municipality of residence; Postcode of the client's place of residence; Service provider; Service unit of the service provider; Event record code. Data on contact type and assessment of the need for treatment: Date and time of contact; Date and time of assessment of the need for treatment; Occupation (person assessing the need for treatment); Urgency of care; Type of visit; Outcome of assessment of the need for treatment. Appointment data: Date and time of appointment booking; Date and time of booked appointment; Occupation; Service type; Contact type. Service event data: Date and time, service event starting time; Date and time, service event closing time; Occupation (person delivering care); Service type; Contact type; Client group; Urgency; Type of visit; First visit; Reasons for visit/diagnoses; External cause (accidents); Type of accident; Procedures and interventions; Vaccination data and medication data; Dental health care, DMFT index; Dental health care, CPI index. Follow-up care: Service event cancellation; Reason for service event cancellation. More information about the data contained in the dataset can be found here.
Source of Information: Data is sent by healthcare providers nationwide.
Data level: Patient level.
Number of Records: Unknown.
Date Range: 2008 onwards.
Cancer Areas of Interest: Unknown.
Open data access: Data is not publicly available. More information can be found here.
Information/Contact for data request: Information on how to access data can be found here.
Database: Sotkanet Indicator Bank
Primary purpose: Offer information about key population welfare and health data.
Sponsor, manager or home institution: Finnish Institute of Health and Welfare.
Type of information: The database contains the following indicators related to cancer: Cancer index, age-standardised info ind. 245 Cancer index, not age-standardised; Entitled to special refunds on medicines for cancer 31.12., age-standardised population share(%); Entitled to special refunds on medicines for cancer 31.12., as % of total population; Five-year relative survival rate of bowel cancer patients, %; Five-year relative survival rate of breast cancer patients, %; Five-year relative survival rate of cervical cancer patients, %; Proportion of women invited to breast cancer screening (mammography) who attended, %; Proportion of women invited to cervical cancer screening (smear test) who attended, %.
Source of Information: Unknown.
Data level: Hospital level.
Number of Records: Unknown.
Date Range: 1990 onwards.
Cancer Areas of Interest: Unknown.
Open data access: The data is openly available.
Information/Contact for data request: Information on how to access data can be found here.
Databases for Clinical Trials, Surveys and Biobanks
Survey/Biobank: FINRISK
Primary purpose: Store the sample collection and data information of participants from the FINRISK survey. The purpose of the survey was to assess the risk factors of chronic diseases, including cancer.
Sponsor, manager or home institution: THL Biobank.
Type of information: Survey answers about cancer diagnosis and smoking habits or exposure, as well as many other survey answers for risk factors. There's also a sample collection from the participants at the THL Biobank. Questionnaires can be found here.
Data level: Respondent level.
Number of Records: About 35,000.
Date Range: 1972-2012.
Cancer Areas of Interest: Unknown.
Open data access: Data is not publicly available. More information and variable descriptions can be found here.
Information/Contact for data request: Information on how to access data can be found here.
Survey/Biobank: National FinHealth 2017 Study
Primary purpose: Store the sample collection and data information of participants from the National FinHealth 2017 Study survey. The purpose of the survey was to produce up-to-date information on health, health behavior, functional capacity and well-being of adults.
Sponsor, manager or home institution: THL Biobank.
Type of information: Survey answers about cancer diagnosis and smoking habits or exposure, as well as many other survey answers for health information and behavior. There's also a sample collection from the participants at the THL Biobank. More information can be found here.
Data level: Respondent level.
Number of Records: About 6,600.
Date Range: 2017.
Open data access: Data is not publicly available. More information and variable descriptions can be found here.
Information/Contact for data request: Information on how to access data can be found here.
Survey/Biobank: Finnish Mobile Clinic Examination
Primary purpose: Store the sample collection and data information of participants from the Finnish Mobile Clinic Examination survey. The purpose of the survey was to monitor population health, need for treatment, functional abilities, and collect data for epidemiological search.
Sponsor, manager or home institution: THL Biobank.
Type of information: Medical history, smoking habits, and other health information. There's also a sample collection from the participants at the THL Biobank.
Data level: Respondent level.
Number of Records: About 60,000.
Date Range: 1965-1980.
Cancer Areas of Interest: Unknown.
Open data access: Data is not publicly available. More information can be found here.
Information/Contact for data request: Information on how to access data can be found here.
Survey/Biobank: Health 2000 and 2011
Primary purpose: Store the sample collection and data information of participants from the Health 2000 and 2011 survey. The purpose of the survey was to gather data on the most important public health problems in working-aged and aged population, their causes and treatment as well as on the population’s functional capacity and working capacity.
Sponsor, manager or home institution: THL Biobank
Type of information: Medical history, smoking habits, and other health information. There's also a sample collection from the participants at the THL Biobank. Forms can be found here.
Data level: Respondent level.
Number of Records: About 13,000.
Date Range: 2000 and 2011.
Cancer Areas of Interest: Unknown.
Open data access: Data is not publicly available. More information can be found here.
Information/Contact for data request: Information on how to access data can be found here.
Study/Biobank: ATBC Study
Primary purpose: Store the sample collection and data information of participants from the study "The alpha-tocopherol, beta-carotene lung cancer prevention study: Design, methods, participant characteristics, and compliance".
Sponsor, manager or home institution: THL Biobank.
Type of information: Detailed information about participants, including physical description, smoking habits, health record, and others. There's also a sample collection from the participants at the THL Biobank. All variables can be found here.
Data level: Patient level.
Number of Records: About 29,000.
Date Range: 1985-1993
Cancer Areas of Interest: Lung cancer.
Open data access: Data is not publicly available. More information can be found here.
Information/Contact for data request: Information on how to access data can be found here.
Electronic Health Records
Clinical Practices Guidelines
Latest Policymaking Initiatives
Survey: FinSote - Lifestyle and Risk Factors
Sponsor, manager or home institution: Finnish Institute for Health and Welfare
Primary purpose:' The FinSote National health survey aims to monitor the changes in the population's well-being and health.
Type of information: Proportion of daily smokers, proportion of daily users of e-cigarettes containing nicotine, and Proportion of daily users of tobacco products or e-cigarettes containing nicotine.
Level: National level.
Access to information: Information can be found here.