Concerned about the FinRegistry ready-made dataset? Read more about the dataset and how to object to the processing of your data

Findata’s FinRegistry ready-made data set has sparked discussions about the secondary use of social and healthcare data and the privacy of citizens. In this article, we have compiled answers to questions raised by the recent news coverage.

Finnish broadcasting company Yle reported on Saturday, June 15, 2024 (yle.fi) and Sunday, June 16, 2024 (yle.fi) about the FinRegistry ready-made dataset, for which Findata, as a data permit authority, can issue data permits.

The data set consists of registry data collected in the FinRegistry research project by THL and the Institute for Molecular Medicine Finland (FIMM) at the University of Helsinki, and the research data derived from it. It includes information from DVV, ETK, Kanta Services, Kela, the Cancer Registry, THL, and Statistics Finland. Data descriptions can be found in the Data Resources Catalogue (aineistokatalogi.fi).

In addition to ready-made data sets, we grant permits for the secondary use of social and healthcare data when data is needed from multiple public data controllers, the private sector, or Kanta Services.

Findata has not yet issued any permits for the FinRegistry dataset, meaning no data has been provided to anyone from the dataset.

Secondary use of social and health data means that client and register data from social and health care services are used for purposes other than the primary reason for which they were originally collected. In Finland, secondary use, such as scientific research, has promoted the health and well-being of citizens for decades.

Findata is the data permit authority for the social and health sector, and its operations are based on the Act on the Secondary Use of Health and Social Data, also known as the Secondary Use Act.

A data permit is a temporary permit for processing pseudonymized, confidential personal data. The data is provided to the permit holder in a secure processing environment.

Does Findata sell Finnish social and health care data?

No, we do not sell anyone’s social and health care data or engage in commercial activities.

Findata is a data permit authority that issues temporary permits for the secondary use of social and health care data when the conditions stipulated in the Secondary Use Act are met. When the permit expires, the permit holder no longer has access to the data.

The permit is always granted for a specific purpose, and the permit names the individuals who have the right to process the pseudonymized data in a closed remote access environment. Other individuals cannot see the data. The permit process always includes an application review and careful consideration. All Findata employees have had a security clearance from the Finnish Security and Intelligence Service. The permit holder accepts the permit conditions, which specify how the data may be processed.

Permits are public government decisions, and information about them can be found on the Issued Permits page.

We do not provide the FinRegistry data set or any other registry data sets as a whole to permit applicants; only the data necessary for conducting the research is extracted. For example, when it comes to birth dates, we assess whether the birth year or month would suffice instead of the exact birth date. We also evaluate whether individual-level data needs to be disclosed or if anonymous statistical data would be sufficient for the research.

Why didn’t Findata conduct a Data Protection Impact Assessment (DPIA) for the FinRegistry data set?

Yle reported that no DPIA was done for the FinRegistry ready-made data set. However, the risks associated with processing the data have been and are being assessed at various stages:

  • The FinRegistry research project, which compiled the data, conducted a DPIA on the processing of personal data in the research project.
  • Findata has conducted a DPIA of the processing environment where the ready-made data set and other data are processed.
  • Findata is also conducting a DPIA on Findata’s processing activities related to the FinRegistry ready-made data set to ensure that risks specific to this data set are considered.
  • Additionally, permit applicants conduct a DPIA on the planned processing of FinRegistry data.

How does Findata ensure data privacy in the processing of personal data?

As with all personal data sets permitted by Findata, the FinRegistry data set can only be processed in an audited secure remote access environment without internet connectivity. These remote access environments are closed, meaning users cannot transfer data in or out.

The processing environments record data processing and event history. These logs show, for example, who processed the data, how the data was processed, and when it was processed. Log data is collected both from the processing done by the authorities and data controllers and from the processing performed under the data permit.

Once the connection to the processing environment is terminated, permit holders have no means to access the data anymore.

How to object to the secondary use of your data at Findata?

You can object to the use of your data by sending us a request. Your objection will be valid indefinitely from the day the request is processed. We maintain a separate registry of individuals who have submitted an objection request.

This objection applies to data managed by Findata and data that passes through Findata. An objection request to Findata does not prevent other data controllers mentioned in the Secondary Use Act, such as wellbeing services counties, from disclosing data for secondary use.

You can find information about your rights regarding the processing of data at Findata on the Rights to Your Data page.

You can exercise your rights regarding the data processed by Findata through Findata’s e-service. Choose the form based on the right you wish to exercise. If you want to exercise multiple rights or act on behalf of others, complete and submit all relevant forms separately for each person.

Findata must verify the identity of the person exercising their rights to ensure that actions are directed at the correct individual’s data. For this reason, we use Suomi.fi authentication in our e-service.

Suomi.fi authentication is a strong identification service that allows you to log into Finnish public administration e-services using online banking credentials, a mobile certificate, or a smart card. Using electronic services is secure when your identity has been verified. You can find more information at suomi.fi.

How to exercise your rights in Findata’s e-service

  1. Go to asiointi.findata.fi.
  2. Click “Login”.
  3. Select Suomi.fi as the authentication method.
    • If you are logged in using another method, log out first.
  4. Authenticate using online banking credentials, a mobile certificate, or a smart card.
  5. After authentication, click “Continue to service”.
  6. Select the appropriate form from the list by clicking the blue “Fill in the application” button.
    • To object to the processing of personal data, select “GDPR –Request to object to the processing of personal data”.
    • To request access to your personal data, select “GDPR – Request to access your personal data”.
  7. Fill in the form carefully.
    • If you are submitting a request on behalf of a minor child or a person under guardianship, select “No” under “Is the personal identification number of the person who completed the application?” and complete the form accordingly.
  8. Finally, click the blue Submit application” button.
    • Depending on your device, the button may be on the right side or below the form.

To receive notifications about your request:

  1. Click your name at the top of the e-service.
  2. Add your email address.
  3. Click “Save”.

If you are unable to use the Suomi.fi authentication or service, you can personally visit the reception of the National Institute for Health and Welfare in Helsinki or Kuopio. You can find the addresses of the THL offices on the THL website (thl.fi). We will verify your identity, so please bring an identity document with you.

If you are sending the form by mail, your signature must be certified by a public notary. For more details, visit the Digital and Population Data Services Agency’s website at dvv.fi.

Use these forms only if you can not use Findata’s e-service:

Frequently asked questions about the secondary use of social and health data

What is a data permit?

A data permit is a fixed-term authorisation granted by a public authority to use individual-level personal data for a specific, clearly defined purpose, such as research or compiling statistics.

A permit is granted only for a justified reason, and the consent of each individual is not required. Authorities such as Findata, Kela, or wellbeing services counties are responsible for ensuring that data is used lawfully and responsibly.

The permit holder is given access only to the data necessary for the research. The dataset is delivered in pseudonymised form: names and personal identity codes are replaced with codes, so individuals cannot be identified. The data may only be processed in a secure processing environment without an internet connection, and only named individuals are granted access.

Read more:

What is Findata?

Findata is the social and health data permit authority in Finland. It was established in 2019, and its operations are based on the Act on the Secondary Use of Health and Social Data, commonly known as the Secondary Use Act.

We grant data permits for the secondary use of health and social data when the data is needed from multiple public data controllers, from the private sector, from Findata’s ready-made datasets, or from the Kanta Services. We compile and preprocess the datasets with strict attention to protecting individuals’ privacy.

Findata also maintains the secure Kapseli® processing environment, where individual-level data is processed safely.

Can individuals be identified from the data?

Before individual-level data obtained under a data permit is released to the permit holder, Findata processes it in a way that significantly reduces the possibility of identifying individuals.

Direct identifiers, such as names and personal identity codes, are removed from the dataset and replaced with codes. This is called pseudonymisation. In addition, precise data may be generalised. For example, a postcode may be replaced with a region, or a date of birth with a year of birth.

Pseudonymised data may only be processed in a secure environment without an internet connection. The permit holder commits to conditions that prohibit any attempts to identify individuals.

For statistical-level data requests, fully anonymous data is provided. This data describes population groups rather than individuals, and individuals cannot be identified from it.

Identifiable data is only released for particularly justified reasons.

For what purposes can social and health data be used?

The secondary use of social and health data is only permitted for purposes defined by law, such as:

  • Education
  • Scientific research
  • Statistics
  • Planning and reporting duty of an authority
  • Development and innovation activities
  • Knowledge management
  • Steering and supervision of social and health care by authorities

Different types of data are available for different purposes:

  • Individual-level, pseudonymised data is available for research, statistics, planning and reporting tasks of public authorities, and education.
  • Anonymous, aggregated statistical data is available not only for the above-mentioned purposes, but also for development and innovation activities, knowledge management, and the steering and supervision of social and healthcare services.

In addition, wellbeing services counties and other service providers may use the data recorded in their own registers without a separate permit for purposes such as planning and evaluating their operations.

All data permit and data request decisions made by Findata are public. You can view them here: Issued permits

What types of data can be used with a permit from Findata?

Permits granted by Findata cover register-based data from Finnish social and healthcare services. This refers to data generated when people use social and health services.

Register data is stored, for example, in patient and client information systems of wellbeing services counties, national registers, and the Kanta Services.

Findata grants data permits and data request decisions for the secondary use of health and social data when the application concerns:

  • data from several public health and social sector data controllers
  • register data from private social and health service providers
  • data stored in the Kanta Services
  • Findata’s ready-made datasets
  • data from controllers that have transferred their permit authority to Findata

Read more: Data

Can anyone get a permit to use social and health data?

Anyone may apply for a permit, but it is only granted for the purposes defined in law and for projects that meet the permit criteria and data protection requirements. Each application is assessed individually, and data is only released for necessary use.

Data permits and data request decisions are official administrative decisions. The decision process has two stages: the application handler acts as the presenter, and the Director of Findata or their deputy makes the final decision.

A proposed decision does not always lead directly to a permit being granted. Sometimes the application is returned for further preparation or requires modifications.

Which laws regulate the secondary use of health and social data in Finland?

The secondary use of health and social data is governed by several laws that safeguard privacy and define the conditions under which data may be processed.

The EU General Data Protection Regulation (GDPR) regulates all processing of personal data across the EU. It applies whenever personal data is processed.

The regulation on the European Health Data Space (EHDS) creates a common EU framework for the use and exchange of health data, harmonises the use of health data across the EU, and strengthens individuals’ rights to their own data. The regulation entered into force in March 2025 and will be implemented gradually. The provisions concerning secondary use will apply from March 2029.

The Finnish Data Protection Act complements the GDPR at national level. It specifies when sensitive personal data, such as health data, may be processed in Finland.

The Finnish Act on the Secondary Use of Health and Social Data (the Secondary Use Act) regulates the secondary use of health and social data in Finland. Findata’s operations are based on the Secondary Use Act. The Act was amended in 2025.

Other key laws include:

  • Act on the Processing of Client Data in Healthcare and Social Welfare
  • Medical Research Act
  • Clinical Trials on Medicinal Products for Human Use Act
  • Act on the Medical Use of Human Organs, Tissues and Cells
  • Biobank Act

Read more:

What are the benefits of the secondary use of health and social data for citizens?

Using health and social data for secondary purposes, such as registry-based research, benefits society in many ways.

By combining registry data from large populations, it is possible to generate new knowledge that helps develop, for example, treatments for diseases or practices in social services.

Practical benefits for citizens include:

  • When treatment guidelines are studied and developed, it ensures that care is based on up-to-date research evidence
  • Medicines can be made safer and their side effects can be monitored
  • New health technology can be developed, such as applications and devices that support treatment
  • Hospital and health centre services can be improved and streamlined as processes can be developed and studied
  • Research evidence supports decision-making that promotes public health and reduces wellbeing gaps

Read more: Issued permits

How is Findata’s operation supervised?

Several authorities supervise Findata’s operation to ensure that the granting of data permits and the processing of data are carried out in accordance with the law.

Key supervisory bodies include:

  • Data Protection Ombudsman, who supervises the processing of personal data and compliance with data protection legislation
  • Parliamentary Ombudsman, who oversees the lawfulness of authorities’ activities
  • Finnish Supervisory Agency, who supervises secure processing environments

In addition, Findata’s operation is guided and developed by a steering group appointed by the Ministry of Social Affairs and Health, which includes representatives from the ministry and data controllers.

How is the right to object implemented at Findata?

When you object to the secondary use of your data through Findata:

  • Your request is recorded in the case management system maintained by the Finnish Institute for Health and Welfare (THL).
  • Your data will be removed from datasets received by Findata based on your personal identity code. Therefore, we must retain and process your personal identity code to implement the request.
What is the EHDS?

The European Health Data Space (EHDS) is a regulation of the European Union that establishes a common framework for the use and exchange of health data in EU countries. The aim of the regulation is to strengthen citizens’ rights to their own electronic health data and to enable the secure cross-border secondary use of health data.

The EHDS regulation is similar to the current Finnish Secondary Use Act, but it also introduces changes. The regulation includes partly different purposes of use, some of which are reserved only for public or EU entities. In addition, new operating models will be introduced for processing data requests and permit applications.

The regulation entered into force in March 2025 and will be implemented gradually over the coming years. The parts concerning secondary use will begin to apply in March 2029.

What are the laws on which Findata bases the processing of personal data?

Findata’s legal basis for processing personal data are:

  • Article 6, (1)(e) of the EU’s General Data Protection Regulation: processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller
  • Article 4(1)(2) of the Data Protection Act: processing of data that is provided for by the law or that is directly attributable to the controller for the task prescribed by the law

We also process data belonging to special categories of personal data, formerly known as sensitive data. Such data includes, for example, a person’s health data.

The grounds for processing this kind of personal data are:

  • Article 9(2)(g) of the EU General Data Protection Regulation: processing is necessary for the performance of a task carried out in the public interest or the exercise of public authority
  • Section 6(1)(2) of the Data Protection Act: processing is necessary and proportionate for the performance of a task carried out in the public interest by a public authority

See more information on how we process personal data

What is anonymisation and pseudonymisation?

Anonymisation means the transformation of personal data into a form that irreversibly prevents the identification of an individual person. This may mean, for example, removing direct identifiers and simplifying the data to a general level so that personal data cannot be reconstituted in any way.

Pseudonymisation refers to the transformation of personal data, for example into a coded form. In this case, names and personal identifiers can be removed and replaced by another unique identifier, i.e. a code. Often a code key is kept to restore direct personal data to the data. Pseudonymised data are still personal data.

Does Findata transfer data abroad?

Findata grants most permits to projects based in Finland. However, the permit holder may also be located in another EU or EEA country. Even in such cases, the data must be processed in a secure environment and only for the purposes defined in the permit.

As a rule, Findata does not transfer personal data outside the EU or EEA. Exceptions may only be made for a specific reason and when the legal requirements for data protection and information security are met.

Does Findata sell my data?

Findata does not sell data.

We operate as the Finnish Data Permit Authority, responsible for granting permits for the secondary use of social and health data only when there is a statutory basis, such as public interest, and a defined purpose, such as scientific research. Data permits are always granted for a fixed period, after which the datasets are destroyed.

We do not set our own service fees. Our charges are based on the fee decree issued by the Ministry of Social Affairs and Health.

How can I object to the secondary use of my data?

You have the right to object to the processing of your personal data for secondary use, such as research. Once you submit an objection request to Findata, we will no longer disclose your data for secondary use to permit holders.

An objection request submitted to Findata:

  • is valid indefinitely
  • does not remove data that has already been disclosed from existing datasets
  • can be submitted via Findata’s e-service (asiointi.findata.fi), by post, or in person at THL

An objection submitted to Findata does not prevent other data controllers from disclosing your data for secondary use. Therefore, objections must be submitted separately to each data controller.

See Findata’s instructions: How to exercise your rights

What is the difference between primary and secondary use of health and social data?

Primary use means the purpose for which the data was originally saved in the customer register and/or patient register.

The primary purpose may be, for example,

  • examination, treatment and rehabilitation of the patient,
  • the service received by a social welfare customer,
  • or the processing of benefits by the Social Insurance Institution of Finland (Kela).

Secondary use means the use of the same data for purposes other than the primary use.

Legitimate secondary purposes of use include

  • scientific research,
  • statistics,
  • development and innovation activities,
  • education,
  • knowledge management,
  • steering and supervision by authorities and
  • the planning and reporting duty of an authority.

Different purposes of use are subject to different regulations. Only aggregated statistics from which individuals cannot be identified may be obtained for development and innovation activities.

Contact details

Data Protection Officer

Help Desk

General guidance & advice

See also

Your data rights

On this page you will find general information about the secondary use of social and health data, as well as information about your rights as a data subject Read more Your data rights

Our privacy policy

On this page you will find information about how we process personal data. Read more Our privacy policy

Issued permits

On this page you’ll find data permits, amendment permits and decisions on data requests issued by Findata. Read more Issued permits