Estonia
Cancer Centers
North Estonia Medical Centre
Healthcare System
Estonia’s healthcare system is the Health Insurance System, described as “solidarity-based health insurance” [1], and the Estonian Health Insurance Fund (EHIF) is the public law organization responsible for providing the organization of national healthcare services in accordance with the Health Insurance Act, the Health Services Organization Act, and other legislation.
The body responsible for healthcare and all social policies in Estonia is the Ministry of Social Affairs. The Health Board is its child agency. Estonia’s Public Information Act details the terms of compliance to request information not already publicly available. The request is exempt from covering expenses if the request is made for research work.
Administrative or Claims Data
Estonian Health Insurance Fund (EHIF) Database
[2]
Sponsor, manager or home institution: Estonian Health Insurance Fund (EHIF); The Ministry of Social Affairs
Type of information: Variables: Estonian Health Insurance Fund (EHIF) Database
Source of Information: Based on claims data from all Estonian healthcare providers that have signed a contract with EHIF and deliver EHIF-financed healthcare.
Data level: Patient level.
Number of Records: 1.3 million people, i.e. 95% of Estonia's population.
Date Range: 2004 onwards.
Open data access: Data is partially publicly available. Publicly available data can be found here. Information on how to access the data can be found here.
Link/Contact for data request: Contact information.
Registries
Database: Andmebaas Cancer Screening Registry
Sponsor, manager or home institution: The Health Statistics and Health Research Database; The National Institute for Health Development.
Primary purpose: The register collects and analyzes personalized data about the target group of breast, cervical and colon cancer screenings.
Type of information: Data of persons belonging to the target group of screening studies; Screened research participation data and the results of the basic and additional studies performed. [3] Data dictionary could not be found for this database.
Available type of information: Breast cancer screening target population and women invited to screening; Breast cancer screening coverage by examination in target population; Breast cancer screening invitational coverage and coverage by examination in women invited to screening; Detected cancer cases in breast cancer screening programme; Cervical cancer screening target population and women invited to screening; Cervical cancer screening coverage by examination in target population; Cervical cancer screening invitational coverage and coverage by examination in women invited to screening; Detected cancer cases in cervical cancer screening programme; Colorectal cancer screening target population and men and women invited to screening; Colorectal cancer screening coverage by examination in target population; Colorectal cancer screening invitational coverage and coverage by examination in men and women invited to screening; Detected cancer cases in colorectal cancer screening programme. Filtered by sex, age, county and health insurance. More information about the data contained in the dataset can be found here.
Source of Information: The register collects data from health service providers through electronic mass requests through the health information system. Data is also inherited from the population register, the cause of death register, the cancer register and the health insurance data set of the health insurance fund via the X-tee data exchange layer.
Data level: Patient level.
Number of Records: Unknown.
Date Range: 2015 onwards.
Cancer Areas of Interest:
Open data access: Data is partially publicly available. Publicly available data can be found here in Population > Morbidity > Cancer screening programmes. Information on how to access the data can be found here.
Information/Contact for data request: Contact information can be found here.
Database: Andmebaas Cancer Registry
Sponsor, manager or home institution: The Health Statistics and Health Research Database; The National Institute for Health Development.
Primary purpose: The main task of the cancer registry is to ensure the most complete and reliable registration of cancer cases.
Type of information: Diagnosis, i.e. detailed location, time of diagnosis, research methods that confirmed the diagnosis, morphological diagnosis and degree of malignancy, spread of the tumor; Primary treatment by type of treatment - nature of treatment, place of treatment, date of initiation of treatment and method of treatment; Details of the person who completed the cancer notification time and cause of death or time of departure from Estonia; Patient's name, personal identification number, gender, date of birth, place of birth, place of residence at the time of diagnosis and nationality [4]. Data dictionary could not be found for this database.
Available type of information: Cases of malignant neoplasm; Age-specific incidence rate of malignant neoplasms per 100.000 inhabitants; Incidence rate of malignant neoplasms per 100.000 inhabitants filtered by specified site, sex, age group, year and county. More information about the data contained in the dataset can be found here.
Source of Information: Data is updated from the Estonian population register (personal data, including time of leaving the country) from the register of causes of death (death data, including cause of death). Reporting cancer cases is mandatory for all doctors working in Estonia who diagnose or treat cancer. Forensic experts also submit data to the register.
Data level: Patient level.
Number of Records: Unknown.
Date Range: 1968 onwards.
Cancer Areas of Interest: All malignant tumors (C00-C97); Tumors in situ (D00–D09); Benign and unclear and unspecified tumors of the brain and central nervous system, as well as endocrine glands located in the brain region (D32.0–D33.9, D35.2–D35.4, D42.0–D43.9, D44.3–D44.5); Other neoplasms of lymphoid and hematopoietic tissue and similar tissues (D45-D47).
Open data access: Data is partially publicly available. Publicly available data can be found here in Population > Morbidity > Malignant neoplasms. Information on how to access the data can be found here.
Information/Contact for data request: Contact information can be found here.
Database: Andmebaas Cause of Death
Sponsor, manager or home institution: The Health Statistics and Health Research Database; The National Institute for Health Development.
Primary purpose: The register collects and processes data on causes of death for various purposes, including the development of social policy, assessment of population health, and planning of preventive activities in the social and health sectors.
Type of information: Personal data of the deceased (sex, county, month, age group, year and municipality); Causes and circumstances of death; Socio-demographic data of the deceased (education, last place of residence, citizenship, etc.); Details of the basic documents and their authors [5]. Data dictionary could not be found for this database.
Available type of information: Data of cause of death by sex; county; month; age group; year and municipality. Data of causes of death, Autopsies, Preventable deaths, Amenable deaths, Infant deaths, Standardised mortality rates per 100.000 inhabitants and deaths per 100.000 inhabitants. More information about the data contained in the dataset can be found here.
Source of Information: The socio-demographic data of the deceased is provided by the Estonian population register, submitted by the doctors and coroners who have established the death.
Data level: Patient level.
Available data level: National level.
Number of Records: Unkown.
Date Range: 1989 onwards.
Cancer Areas of Interest:
Open data access: Data is partially publicly available. Publicly available data can be found here in Population > Deaths. Information on how to access the data can be found here.
Information/Contact for data request: The contact information can be found here.
Database: Statistics Estonia Cause of Death
Sponsor, manager or home institution: Statistics Estonia.
Primary purpose: The database provides information on deaths of Estonian permanent residents, including causes of death, to be used for population statistics, mortality rate assessment, population forecasting, and comparison with other EU member states, as well as by various state institutions, statisticians, and international organizations.
Type of information: The number of deaths registered during the calendar year and the distribution of the dead by demographic indicators and medical causes of death; indicators are published in absolute and relative numbers (multipliers). By type of deceased settlement unit, place of residence and month of death, gender, age group, nationality, marital status, education level, cause of death. Perinatal deaths; Stillbirths. Infant deaths by gender, age, place of residence, date of birth, mother's age, mother's marital status, mother's level of education.
Available type of information: Total deaths, death rate, standardized death multiplier, death per 100,000 population, cause of death, sex, and age.
Source of Information: Census.
Data level: Patient level.
Available data level: National level.
Number of Records: Unknown.
Date Range: 1989 onwards.
Cancer Areas of Interest:
Open data access: Data is partially publicly available. Publicly available data can be found here at "Population > Population indicators and composition > Population and population composition". Information on how to access full database can be found here.
Information/Contact for data request: Contact information can be found here.
Activity License Registry
Primary purpose: A search tool for any pharmacy, wholesale distributor or manufacturer with an Estonian activity licence for handling medicines.
Sponsor, manager, or home institution: Estonian Agency of Medicine.
Available information: Site name, activity license holder, activity license number, county, city/town/village and type of activity license.
Level: City/town/village level.
Medical Products Registry
Primary purpose: To have an account of all medicinal products and their packages sold in Estonia.
Sponsor, manager, or home institution: Estonian Agency of Medicine.
Available information: Active substance, pharmaceutical form, strength, information about the marketing authorisation, the last date of import, reference price, discount prices and rates, unique codes for package sizes, among other information.
Databases for Clinical Trials, Surveys and Biobanks
Survey/Biobank: The Survey on Health, Ageing and Retirement in Europe (SHARE)
Primary purpose: A pan-European longitudinal survey of the elderly (50+) population, which focuses on the study of the course of the individual aging process and the causal relationships that influence it, for the monitoring of existing policy measures as well as the research-based initiation of new measures.
Sponsor, manager or home institution: The Max Planck Society Munich Centre for the Economics of Aging (MEA); The Estonian Institute for Population Studies.
Type of information: Self-assessment of health; Limitations in coping and daily activities; Health condition; Use of medicines; Mental health; Use of health and social services; Physical activity and body weight; Nutrition; Alcohol consumption; Smoking; A social network; Expectations and Satisfaction; Economic activity and material livelihood; Socio-economic background characteristics; Longitudinal indicators; Health status; Living conditions and employment; Longitudinal data; Health and activity indicators for the 3rd wave and elderly poverty, coping and social relationships [6]. Data dictionary could not be found for this database.
Available type of information: Occurrence of chronic diseases, occurrence of cancer or malignant tumour filtered by disease group, year, sex, household type, indicator, age group, nationality/citizenship/country of origin/indigeneity and economic activity. More information about the data contained in the dataset can be found here. Questionnaires can be found here in SHARE wave 4, 5 and 6. Variables of the database like naming of variables, missing code scheme, merging modules and/or waves can be found here. More methodological information can be found here.
Data level: Respondent level.
Available data level: pan-European
Number of Records: Unknown.
Date Range: 2010 onwards.
Cancer Areas of Interest:
Open data access: Data is partially publicly available. Publicly available data can be found here. Information on how to access the data can be found here.
Information/Contact for data request: Contact information can be found here.
Survey/Biobank: The Estonian Health Interview Survey (ETeU)
Primary purpose: The aim of ETeU is to assess the health status of the Estonian population, the factors influencing it, the restrictions caused by health, the need for assistance, the use of health care services and to compare the results with previous surveys.
Sponsor, manager or home institution: National Institute for Health Development; Statistics Estonia.
Type of information: General data on the household and household members; Health status; Accidents and injuries; Mental health; Emotional feeling; Physical and sensory functional limitations; Taking care of yourself; Housework; Preventive actions; Sexual behavior; Studies and work; Place of residence; Childhood home; Social support; Use of outpatient care; Use of hospital and day care; Use of medicines; Smoking, Alcohol consumption; Drug use; Weight, Growth and physical activity, Eating habits, and attitudes [7]. More information about the data contained in the dataset can be found here in Health behavior and health > Estonian Health Survey. Questionnaires can be found here in Results and Publications > 2019 Survey.
Data level: Respondent level.
Available data level: Estonian residents aged 15 and older are surveyed.
Number of Records:
Date Range: 1996 onwards.
Cancer Areas of Interest:
Open data access:
Information/Contact for data request: Contact information can be found here.
Electronic Health Records
Health Information System
Primary Purpose: Allowing healthcare service providers to see and share patient information and healthcare data across the country.
Sponsor, manager, or home institution: Ministry of Social Affairs (sponsor); Health and Welfare Information Systems Centre - TEHIK (manager)
Number of records: Any Estonian citizen who used a healthcare service since 2008.
Data source: Data inserted by healthcare providers.
Date range: 2008 onwards.
Link/contact: Contact information.
Clinical Practices Guidelines
Action Plan for Cancer Control
Primary purpose: Reducing the number of cancer cases and deaths, and improving the quality of life of cancer patients.
Sponsor, manager or home institution: Ministry of Social Affairs; National Institute of Health Development; Estonian Cancer Society.
Level: National level.
Cancer ares of interest: All.
Availability in English: No.
Good Practices Guidelines for Clinical Trials
Primary purpose: To ensure the rights, safety and well-being of the participant according to the principles of the Declaration of Helsinki.
Sponsor, manager or home institution: European Medicines Agency.
Level: National level.
Cancer Areas of Interest: All.
Availability in English: Yes.
Other Requirements for Clinical Trials
Latest Policymaking Initiatives
Population Health Development Plan 2030
Institution: Ministry of Social Affairs
Primary purpose: National health plan to increase life expectancy and quality of life during later years, and decrease healthcare inequalities.
Type of information: A detailed plan to deliver on the goals stated above, with data to support policy decisions, which includes cancer-related decision-making.
Level: National level.
The State of Healthcare Integration in Estonia Report
Institution: Estonian Health Insurance Fund.
Primary purpose: Assess healthcare integration in Estonia.
Type of information: Overview of the Estonian healthcare system, information about avoidable admissions to hospitals and specialist visits, hospital stay, NMIS procedures, patient behavior, provider behavior, care continuity, preventive services, and other various information.
Level: National level.
"Quality Bonus System Needs Adjustment" Report
Institution: Estonian Health Insurance Fund.
Primary purpose: Point out flaws in the QBS system and suggest easy-to-make adjustments.
Type of information: Analysis of QBS score distribution including tables and graphs for various data, list of proposals for adjustments to the QBS system with details, among other information.
Level: National level.
Healthcare Costs 2019
Institution: National Institute for Health Development.
Primary purpose: Provide information about healthcare costs for anyone interested in healthcare.
Type of information: Total national health expenditure, comparisons to previous years, share of public sector and other details, household expenditures, and healthcare insurance fund expenditures, among others.
Level: National level.
Estonian Handbook for Guideline Development
Institution: Estonian Health Insurance Fund.
Primary purpose: To serve as an up-to-date practical resource for developing health guidelines.
Type of information: Guideline development process, topic proposals, evidence retrieving, report, dissemination of recommendations, among other topics.
Level: National level.
Marketing Authorization for a Drug
Institution: Medicines Board
Primary purpose: Legislation and Forms to inform the marketing authorization for drugs.
Type of information: Medicine-related laws, regulations, conditions, requirements and statutes related to the authorization of drug marketing, guides and manuals to inform the process as well as forms that are required to be authorized.
Level: National level.
Handling of Medicine
Institution: Medicines Board
Primary purpose: Legislation and Forms to inform the handling of drugs.
Type of information: Medicine-related laws, regulations, conditions, requirements and statutes related to the handling of drugs, guides to inform the handling of drugs as well as forms that are required to be authorized to handle drugs.
Level: National level.
Other Estonian Health Legislation
"Gift of Life" Foundation
Primary purpose: To support cancer treatment not covered by the Estonian Health Insurance Fund.
Level: National level.
