Finnish Registry for Kidney Diseases (national quality register)

Controllers

Finnish Institute for Health and Welfare (THL)
P.O. Box 30, 00271 Helsinki, Finland
+358 29 524 6000

The above-mentioned organisations decide on and are responsible for the processing of personal data for the purpose mentioned in this notice, which means they are controllers of this data.

Contact person for issues related to processing of personal data

Name: Janika Põder
Phone number: +358 29 524 8108
Email: [email protected]

The email address for THL’s data protection officer is: [email protected]

Name of dataset

Finnish Registry for Kidney Diseases (national quality register)

The purpose of processing personal data

We process your personal data for statistics, research and the assessment of service quality.
Finnish Registry for Kidney Diseases is aimed at monitoring and developing the quality and effectiveness of the treatment of patients with renal replacement therapy (dialysis or kidney transplantation) and predialysis patients. In addition, personal data are processed for the performance of expert tasks.

Legal basis for the processing of personal data

The processing of personal data is always based on valid legislation. The legal basis of processing personal data for the purposes covered by this notice is:

• Compliance with a legal obligation (General Data Protection Regulation, Article 6(1)(c)).
• Other basis: The Act on the National Institute for Health and Welfare (668/2008) lays down provisions on the task of maintaining quality registers relevant for the field. The quality registers that the Finnish Institute for Health and Welfare has an obligation to keep have been determined by the Ministry of Social Affairs and Health Decree (801/2022). To perform its statutory (specified in more detail in section 2, subsection 1, paragraphs 1-3, 4 and 4 d of the Act on THL) tasks, the Finnish Institute for Health and Welfare is entitled to receive free of charge and notwithstanding confidentiality provisions and other limitations on access to information, the necessary information concerning the population, including identification data, in accordance with section 5 of the Act.
• Performance of a task carried out in public interest (Article 6(1)(e) of the General Data Protection Regulation).
• Performance of a task carried out in the exercise of official authority vested in the controller (Article 6(1)(e) of the General Data Protection Regulation).

Processed personal data

Basic information

• Name, personal identity code, gender, municipality of residence, country of birth
• Information on the kidney disease (diagnosis, whether the diagnosis is based on a biopsy)
• Form of treatment (predialysis stage, haemodialysis, peritoneal dialysis, kidney transplantation)
• Treating hospital

Initial data

• Height, weight, blood pressure
• Laboratory results
• Associated diseases (e.g., diabetes, cancer)
• Information on medication (e.g., blood pressure medication, vitamin D, intravenous iron)
• Start date of renal monitoring
• First dialysis route of a haemodialysis patient

Annual data

• Height, weight, blood pressure
• Laboratory results
• Treatment details (e.g., dialysis route, dialysis therapy sessions and hours per week, whether the patient is on a transplantation list, date when placed to the transplantation list)
• Information on medication (e.g., blood pressure medication, anti-rejection medication)

Death information

• Date of death
• Cause of death
• Treatment information at the time of death (e.g., was the patient on the transplantation list, blood pressure medication, dialysis route, dialysis therapy sessions and hours per week)

Regular data sources

The information is collected from the nephrological units in Finland (dialysis units and renal outpatient clinics) and from the organ transplantation register. Information may also be collected from THL’s registers and from registers that THL has a right to obtain information from (e.g., Kela’s registers, Digital and Population Data Services Agency and Statistics Finland).

Transfer or disclosure of personal data

No regular transfers of the data take place to parties outside THL.

Transfer of data to non-EU/EEA countries.

Personal data are not transferred to non-EU/EEA countries.

Profiling and automated decision-making

The Finnish Institute for Health and Welfare (THL) does not proceed to automated decision-making based on personal profiling.

Storage of personal data

The storage periods of personal data are determined in compliance with the Archives Act (831/1994) and the organisation’s information management plan.  In compliance with the valid legislation, the organisation stores the personal data referred to in this notice until further notice. In compliance with the valid legislation, THL stores the personal data referred to in this notice until further notice.

What rights do you have?

Under data protection legislation, you have certain rights. By exercising these rights, you can ensure that the protection of your privacy, which is one of your fundamental rights, is realised. If you would like to exercise your rights, contact the organisation’s registry office.

In certain cases and situations, your rights may be restricted, for example due to one of the organisation’s statutory obligations or if the processing takes place for scientific research or for statistical or archiving purposes. If your rights are restricted, the organisation will provide for appropriate and necessary safeguards required under the data protection legislation.

Right to withdraw consent

If we are processing your personal data based on your consent, you have the right to withdraw this consent. Please note that the processing of data for purposes other than scientific research is in principle based on legislation rather than your consent.

Right to access data concerning you

You have the right to know if the organisation is processing personal data concerning you. You also have the right to know which personal data concerning you are processed and how. Additionally, you have the right to receive a copy of the personal data concerning you, provided that giving you this copy will not have adverse effects on the rights and freedoms of others and that the organisation does not have legal grounds for refusing to disclose the data.

Right to rectification of data

As a point of departure, you have a right to have inaccurate or incorrect data rectified.

Right to erasure of your data

You may have the right to have your data deleted from the organisation’s register. If the processing of your data is based on the performance of the organisation’s statutory tasks or there is some other legal obligation associated with preserving it, your right to have the data deleted probably is restricted.

Right to restrict processing

You may have a right to restrict the processing of your personal data in cases laid down in the law. The right to restrict processing may exist, for instance, if you believe that the personal data concerning you are inaccurate, they are being processed unlawfully, or you have opposed the processing of your data. In this case, we may only process your personal data by your consent, where necessary for the establishment, exercise or defence of legal claims, or where it is in general interest or essential to protect another person’s rights.

Right to oppose the processing of personal data

You may have the right to oppose the processing of your personal data in cases laid down in the law. The right to oppose may be relevant when, for example, the processing includes automated decision-making based on the profiling or if the information is used for the purpose of direct marketing.

Right to lodge a complaint with the supervisory authority

You have the right to request the Data Protection Ombudsman to assess the lawfulness of the organisation’s practices.

Contact information:
Office of the Data Protection Ombudsman
Visiting address: P.O. Box 4, 00530 Helsinki
Mailing address: P.O. Box 800, 00531 Helsinki, Finland
Switchboard: +358 29 56 66700
Facsimile: +358 29 56 66735
Email: [email protected]