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Most registers concern individuals, but they may also concern municipalities, companies, buildings, property or events. Most registers are person registers and allow data to be combined using personal identity codes.
Registers are full of population health and welfare data
The National Institute for Health and Welfare (THL), the Social Insurance Institution of Finland (Kela) and Statistics Finland are responsible for the majority of the key registers in the health and welfare sector. The THL registers contain data regarding the functioning of the healthcare and welfare service organisation, such as doctor’s visits, home care and child welfare services. The Kela registers are used for collecting data on benefits and allowances included in basic security, such as granted medicine expenses refunds, sickness allowance and support for the disabled. The registers of Statistics Finland include a wide variety of data on the population’s income, education, living conditions and other factors relevant for welfare.
The THL Sotkanet service, Kela’s statistical database Kelasto and Statistics Finland’s StatFin statistical database allow users to make their own statistical tables from the data in the register. A use permit is always required for the handling of individual-level data.
Patient documents and social welfare customer documents
Patient documents are documents or records prepared or received for the purpose of arranging the care of a patient; they contain information about the patient’s health or other personal data. Patient documents contain the following:
- key information regarding care
- notes on the progress of illnesses and care
- notes on risks, the potentially harmful effects of care and suspected accidents
- notes on ward care
- notes on consultations and care meetings
- notes on prehospital care and transportation
- notes on a patient’s access to information and their opinions on care
- notes on the care of an underage patient or a patient who cannot express their will
The social welfare customer documents refer to documents related to the social welfare services arranged by a public authority or private organisation that contain information regarding a customer or other private person. The social welfare customer documents contain the following:
- applications and decisions regarding social welfare services
- applications and decisions regarding social benefits
- agreements between the customer and service provider of social welfare services
- reports by the social welfare services’ customer about their situation
- evaluations, statements and reports prepared by experts and service providers on the situation of the customer and the actions of the social welfare services
- referrals for examinations, services and support measures
- information about the customer’s financial situation (income, wealth and expenses).
Biobank samples and data
“Biobank” refers to a medical collection that contains anthropogenic samples and related data. Donating samples to a biobank is voluntary and requires the written consent of the donor or their guardian.
Biobanks are regulated by law, and the samples are not used for purposes other than research. The aim of biobank-based research is to advance health, understand the mechanisms of diseases or the development of products and care practices used in healthcare and nursing.
Biobanks keep samples and data for future research needs
Biobanks differ from conventional research sample collections in that biobanks do not collect samples for one instance, but for various future research needs. Researchers are obligated to submit sample-specific results back to the biobank. Biobanks also organise research result archival and ensure the data is available for later research.
Samples for biobanks may be obtained when samples are taken for care-related reasons or during participation in scientific research. Some sample types:
- tissue and cell samples (biopsies, fine-needle aspirations, smears, etc.)
- blood samples
- secretion samples
- DNA or cells isolated from samples
Furthermore, data related to the sample and donor is also regarded, such as
- sample-related data (sample type, time and date, diagnostic details, handling history, information gained from the sample, etc.)
- general details of the donor (identifier, gender, etc.)
- data on the donor’s health (diagnoses, medical procedures, care given, laboratory results, imaging copies, etc.)
- research data (e.g. the results of biobank-based research)
- hereditary information for the individual
There are both national and regional biobanks
The Finnish National Supervisory Authority for Welfare and Health (Valvira) maintains the national biobank register. Valvira has granted operating licences to ten biobanks in total. The THL Biobank, the Finnish Hematology Registry (FHR) and the Blood Service Biobank are national biobanks. Six biobanks operate within hospital districts and Finland’s only private biobank, the Terveystalo biobank, gather samples from their customers with the customer’s consent. The largest collections of samples by a public organisation are held by the THL Biobank, representing a cross-section of the entire population of Finland.
Valvira is also responsible for managing and supervising the operations regulated by the Finnish Biobank Act. The supervision activities mainly concern privacy protection and the fulfilment of self-determination and other stipulations regarding biobank operations.
Data collected in population studies
“Data collected in population studies” refers to compilations of data that represent a certain moment or period in time and are based on the sampling of a target population or group. The sample represents the target population or group as a whole. Sample-based data usually contains one-off data on individuals, but in some cases data can be collected from the same individuals multiple times.
Data collected in population studies is often based on surveys or interviews. Data related to the respondents’ health examinations and samples may have been collected as part of the surveys and interviews that have later been transferred to a biobank. The information disclosed by the respondents in the study may also have been combined with data collected from registers and other sources. The registers also offer pre-compiled sample-based data for research purposes.
Below is a list of THL and Statistics Finland data based on population studies. The tables provide links to pages with information on the data, variables and biobank samples where possible.