Processing a register-based research finding in health care

Processing a register-based research finding in health care

A person may prohibit health care providers from contacting them if secondary use of their data results in a significant finding.

When social and health care client and patient data is utilised in e.g., research, this is known as secondary use of data. Data can also be used as material in register-based studies. Findata is the data permit authority in the social and health sector (findata.fi) for these studies.

In addition to utilisation in research, information gained from register-based research may also be used to prevent health risks to an individual or to improve their treatment. Such information can be used to identify rare diseases, for example.

What happens if significant research findings are made?

  • The researcher reports the finding to Findata.
  • Findata will investigate which person is affected by the data.
  • Findata then forward the information about the finding to the Finnish Institute for Health and Welfare, where the significance of the matter to the relevant person’s health and treatment is assessed.
  • If the information is deemed meaningful, it will be delivered to the wellbeing services county responsible for the person’s care. 

Once the information arrives in the wellbeing services county, the person responsible for the matter must check the patient information system to see whether the person concerned has set a denial of consent to contacting them. If a person has a denial of consent in place, they must not be contacted or informed about the finding, or the examination and treatment measures that the finding calls for.

The individual also has the right to refuse to be informed about findings when contacted by telephone, for example.

Setting a denial of consent to contact

It will be possible to set a denial of consent in MyKanta in spring 2024 and in person at health care services in your wellbeing services county as soon as the denial of consent functionality has been introduced. Each wellbeing services county defines its own operating model for receiving and recording denials of consent.

If the client wishes to set up such a denial during a visit to a health care provider, the professional must check how the denial needs to be recorded in the relevant wellbeing services county.

The denial of consent to contact is valid until further notice. The denial can be withdrawn when visiting public health care services or in MyKanta.

The denial of consent to contact does not prevent the use of data for the purpose of scientific research. If the person wishes to influence the use of their data for secondary purposes, such as scientific research, more information is available at the website of the Office of the Data Protection Ombudsman

Lue lisää