Register data

FinnGen contains data from a large number of Finnish registers. This data is only available in the Sandbox.

Depending on the register, the data is accessible from:

• Detailed longitudinal data file

• Service sector data file

• Atlas and OMOP CDM

• Other data file (e.g. Minimum extended phenotype data file)

Summary

The following table summarises the FinnGen registers and clinical data sets available in FinGen and where the data is available:

Phenotype data set	Start year or time period	Standardized codes used	In the Detailed longitudinal and Service sector data file (abbreviation)	Atlas and OMOP CDM availability	Other data file
Finnish Cancer Registry	1953	ICD-O-3	Yes (CANC)	Yes	Yes (Click first column link to see data location)
Drug Reimbursement (KELA)	1964	ICD for indication, Finnish specific reimbursement codes	Yes (REIMB)	Yes
Drug Purchase (KELA)	1995	ICD for indication, Finnish specific reimbursement code	Yes (PURCH)	Yes
Causes of death (STAT)	1969	ICD-10,9,8	Yes (DEATH)	Yes
Care Register for Health Care, inpatient visits (THL Hilmo)	1969	ICD-10,9,8 and ATC	Yes (INPAT)	Yes
Care Register for Health care, inpatient operations (THL HIlmo)	1986	Finnish specific NOMESCO and Finnish Hospital League operation codes	Yes (OPER_IN)	Yes
Primary Health Care specialist outpatient visits incl. operations (THL Hilmo)	1998	NOMESCO and Finnish Hospital League operation codes	Yes (OUTPAT/OPER_OUT)	Yes
Primary Health Care outpatient visits (Avohilmo)	2011	ICD10, nurse procedures( SPAT codes) , nurse provided cause of visit (ICPC)	Yes (PRIM_OUT)	Yes
Population Register (DVV)	1964			Birth data as of DF12	Minimum extended phenotype data file
Finnish Registry for Kidney Diseases	1964	Click first column link to see data description		Yes	Click first column link to see data file location
Finnish Register of Visual Impairment (THL)	1983	Click first column link to see data description		Yes	Click first column link to see data file location
Medical Birth Register (THL)	1987	Click first column link to see data description		Yes	Click first column link to see data file location
Register of Congenital Malformations (THL)	1980	Click first column link to see data description			Click first column link to see data file location
Sosioeconomic data (STAT) (limited access to Finnish researchers)	1970	Click first column link to see data description			Click first column link to see data file location
Finnish National Infectious Disease Register (THL)	1989	Click first column link to see data description			Click first column link to see data file location
Finnish Cancer Registry: Cervical cancer screening (THL)	1991	Click first column link to see data description			Click first column link to see data file location)
Finnish Cancer Registry: Breast cancer screening (THL)	1992	Click first column link to see data description			Click first column link to see data file location
Finnish National Vaccination Register (THL)	2011	Click first column link to see data description			Click first column link to see data file location
EA3: Fatty liver disease	31.5.2012-31.5.2022	Click first column link to see data description			Click first column link to see data file location
EA3: Age-related macular degeneration		Click first column link to see data description			Click first column link to see data file location
EA3: Women's health PCOS	1.1.1990-1.2.2023	Click first column link to see data description			Click first column link to see data file location
EA3: Women's health Endometriosis	until 23.3.2023	Click first column link to see data description			Click first column link to see data file location
EA3: Women's health Cervical dysplasia	until 22.2.2023	Click first column link to see data description			Click first column link to see data file location
EA3: Pulmonology	1.1.2000-23.11.2022	Click first column link to see data description			Click first column link to see data file location
EA3: Diabetes and rate kidney diseases	until 31.10.2022	Click first column link to see data description			Click first column link to see data file location
EA3: Heart Failure		Click first column link to see data description			Click first column link to see data file location
EA3: Immune-mediated diseases (Rheumatic and IBD)	14.3.2013-14.3.2023	Click first column link to see data description			Click first column link to see data file location

Table abbreviations:

• KELA: Social Insurance Institution of Finland

• STAT: Statistics Finland

• THL: Finnish Institute for Health and Welfare

• THL Hospital Inpatient and Outpatient (Hilmo): THL Care Register for Health Care

• THL Primary Care and Health Centers (Avohilmo): THL Register of Primary Health Care Visits register

• DVV: Digital and Population Data Services Agency

• EA3: Expansion area 3

An example of how the Finnish register data has been used can be found in this publication.

Hilmo

The Finnish Social and Healthcare Notification System (Hilmo) is a nationwide social and healthcare data collection and reporting system maintained by the Finnish Institute for Health and Welfare (THL). FinnGen has data from

• Hilmo (Health-Hilmo): information on inpatient care and specialized outpatient care (Care Register for Health Care)

• Avohilmo: information on outpatient care and occupational health care (Register of Primary Health Care visits)

Hospital data (inpatient and outpatient) - Hilmo (Health-Hilmo) register

The Hilmo (Care Register for Health Care) register from THL has information on:

• Patients discharged from inpatient care (since 1969)

• Surgical operations (since 1986)

• Specialised outpatient care (since 1998)

Accuracy and reliability

Health-Hilmo data is reviewed for any errors and omissions as soon as it arrives at the Finnish Institute for Health and Welfare (THL). Since 2016, the data has been reviewed using an automatic process that checks, among other things, mandatory data and whether the codes contained in the data correspond to the codes defined for Health-Hilmo. If errors or omissions are found in the review, the data provider is informed and responsible for correcting, supplementing or resubmitting the material.

The compiled statistics are compared with the corresponding statistics of the previous year. Unclear cases will be checked with the data providers. If, despite revisions and corrections, the data is left with deficiencies or errors, they are described in the statistical report.

The quality of the data collected in Health-Hilmo has been assessed since its inception in 1969 in more than 30 scientific studies (a list can be found here). The majority of these studies have focused on cardiovascular disease, mental disorders and injuries. The general conclusion is that the data on treatment periods is comprehensive and that the main diagnoses and priority (main) procedures have been well reported. Some data omissions on side diagnoses and other procedures have been identified. Additionally, the quality and coverage of data have been observed to vary between hospital districts.

A quality report on specialized health care, in Finnish, can be found here. The Hilmo Opas contains some details of the quality assurance process.

Primary care data - Avohilmo register

The Avohilmo (Register of Primary Health Care visits) register from THL has information since 2011 on:

• Outpatient care visits, procedures, home care, and occupational health care

The data in Avohilmo is not as reliable as in Hilmo (Health-Hilmo). Finnish doctors are legally responsible for entering codes into Health-Hilmo. This is not the case in Avohilmo. Some codes are also provided by nurses (ICPC2) in Avohilmo.

Accuracy and reliability

Data quality is monitored by the Finnish Institute for Health and Welfare (THL) and the data producers using Avohilmo's reports which are updated daily. These reports monitor the coverage and quality of the data collection by service providers and type of service, as well as the coverage for reasons of visits including:

• Visits on a weekly and monthly basis

• Reasons for visits and their recording rates monthly

• Procedures and their recording rates monthly

• Acute respiratory infection (influenza and other viruses)

THL reaches out to the data providers to request corrections if any shortcomings in the quality are identified. The data correction is always done by the data producers. If necessary, the Avohilmo register incorporates updated and corrected data, mainly from the last year. During 2020, the coverage of Avohilmo data was reviewed on a weekly basis for each patient information system. The information system vendors and service providers were contacted to correct any missing information.

A quality report of Avohilmo can be found here (in Finnish).

Causes of death register

The Causes of death register from Statistics Finland has information since 1969 on:

• the year and date of death

• the basic cause of death

• the immediate cause of death

• 1-4 contributing causes of death

• harmonized 54-class basic cause of death classification (54 categories) (not used in FinnGen)

The classifications of causes of death are described in the home page of the statistics in Classifications under the "Population and Education" section.

The data is derived from death certificates and complemented by data on deaths from the Population Information System of the Population Register. The statistics on causes of death include all deaths in Finland or abroad of persons permanently resident in Finland at the time of their death.

Accuracy and reliability

The data is very reliable and the cause and time of death are accurately recorded. A quality report can be found here.

Consistency

• Between 1969 and 1986, the international classification ICD-8 was used with Finnish additions.

• Between 1987 and 1995, the data was classified using the national classification of diseases 1987, ICD9, where comparability to the international version is maintained.

• Since 1996, the statistics have been compiled based on the 10th revision of the International Classification of Diseases (ICD-10), with some Finnish additions (listed here in Finnish). This is the WHO version of ICD10 and does not include some of the subtypes and extensions of the ICD10 codes used in the full Finnish set of ICD codes.

Cancer register

The Finnish Cancer Registry has data since 1953.

Healthcare organizations in Finland have a statutory obligation to provide information on every cancer case or strong suspicion of cancer to the Finnish Cancer Registry.

The Finnish Cancer Registry is also a statistical and epidemiological research institute that does active collaboration both nationally and internationally. It has three main focus areas: cancer statistics, research and screening.

• Cancer statistics are used to monitor the incidence of new cancer cases and the survival and mortality of cancer patients. The statistics of the Cancer Screening Registry are used in the evaluation and quality control of cancer screening.

• Cancer research focuses on identifying the causes of cancer in the population, prevention and early detection of cancer, together with factors affecting the survival of cancer patients.

• Cancer screening is the systematic search for the precursors or early stages of cancer in the population. The goal is to reduce deaths due to cancer among those screened. Cervical and breast cancer screening data is included in the FinnGen.

Accuracy and reliability

The data is very reliable. The Finnish Cancer Registry quality controls the data and uses it for its own research activities.

Drug purchase register

The Drug Purchase register from KELA has information since 1995 on:

• persons who during a specific time period have purchased medicines that are reimbursed

• reimbursements for medicines purchased during a specific time period

• costs for medicines purchased during a specific time period

• prescription medicines purchased during a specific time period

The data is based on purchases of dispensed medicines reimbursable under the Finnish National Health Insurance (NHI) Scheme by the date of purchase. The purchase of medicines is accompanied by an on-the-spot NHI reimbursement to the customer according to the prescription record.

All permanent residents of Finland are covered by the Finnish National Health Insurance (NHI) Scheme and are eligible to reimburse the cost of reimbursable medicines prescribed by a doctor or dentist. Only outpatient medication costs are covered by the National Health Insurance Scheme. Medication administered in public hospitals is not reimbursable. Annual statistics are completed by the end of March following the end of the reference year.

Accuracy and reliability

These statistics are compiled from an individual-level registry on medicine reimbursements. They are produced from the benefits system for pharmacy payment reporting (prescription file). Any errors detected are corrected immediately in accordance with the release guidelines issued by the Advisory Board of the Official Statistics of Finland. Errors discovered in the online service are corrected and the erroneous information is removed.

Consistency

The effect of legislative amendments on eligibility conditions and rates should be taken into account when making year-to-year comparisons. Data on reimbursements for prescription medicines have been collected since 1995. The reimbursement scheme for medicines was changed at the beginning of 2006 with the right to reimburse smaller purchases than before. Since the beginning of 2007, the data also includes medicine purchases reimbursed by the workplace funds.

Other things to keep in mind include:

• The buyer of reimbursed prescription medicines may not use all the medicines purchased

• The data only includes outpatient medication and not inpatient (hospital) medication

• The data does not include prescription medicines not approved for reimbursement by the Pharmaceuticals Pricing Board

• The data does not include most of the over-the-counter (OTC) medicines

More information about reimbursed medicines including changes in the annual limit on out-of-pocket prescription drug expenses and reimbursement rates is available here.

Drug reimbursement register

The Drug Reimbursement register from KELA has data since 1964.

The medicine reimbursement system was created in Finland in 1964. The Health Insurance Scheme is administered by the Social Insurance Institution of Finland (Kela) and covers all residents of Finland. The latest version of the Health Insurance Act (Sairausvakuutuslaki) is 1224/2004.

The Health Insurance Scheme reimburses some of the costs for prescription medicines which are used for the treatment of an illness. An over-the-counter product may also be granted reimbursement status if the product is prescribed by a physician and considered, on medical grounds, to be an indispensable medicinal product. Basic topical ointments prescribed for the treatment of chronic skin ailments are also reimbursable, as are clinical nutritional preparations used in the treatment of a serious illness. Reimbursement is also paid to a limited group of patients for the dosage service fee charged by pharmacies.

The payment of reimbursement is possible only after the Pharmaceuticals Pricing Board has approved the reimbursement status of the medicine, basic topical ointment or clinical nutritional preparation and confirmed its reasonable wholesale price. The Pharmaceuticals Pricing Board operates under the auspices of the Ministry of Social Affairs and Health.