When patient data is utilised in research, this use is referred to as secondary use of the data. In secondary use, the data can be used as material in register research, for example. Permits for researchers to carry out such research are issued by the Finnish Social and Health Data Permit Authority Findata (findata.fi).
Information gained from research can be used to benefit individuals
Since the beginning of 2024, health care services have been able to use the data from register research in a new way. In addition to utilisation in research, information gained from 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.
If a significant finding about an individual is made in research, the health care services in the wellbeing services county may contact the person and provide information and possible treatment options. This will allow treatment to be made available to the person in a more timely manner.
Individuals cannot be directly identified from research data
In the secondary use of patient data, personal data is kept separate from research data in such a way that the researcher cannot identify whose data they are processing.
However, if a significant finding is made in the research, Findata and THL can find out who the information pertains to, so that the wellbeing services county can contact the person.
You can deny consent to being contacted by the health care services
If you wish, you can deny consent to being contacted by health care services in a situation where research data reveals significant information about your health.
If you deny consent to being contacted by health care services, professionals in the wellbeing services county will not be able to contact you to explain about the information discovered in the research data and any necessary examination and treatment procedures.
It will be possible to set a denial of consent to being contacted in MyKanta from spring 2024 onwards. A denial of consent to being contacted can also be set in the health care services of your wellbeing services county. A denial of consent to being contacted is valid until further notice. You can withdraw the denial of consent whenever you manage your affairs in MyKanta or deal with the health care services in your wellbeing services county.
If you have not denied consent to being contacted and are contacted by the health care services in your wellbeing services county, you can also opt out of learning about the information at this point.
The denial of consent to being contacted does not prevent the use of data for the purpose of scientific research. If you wish to manage the use of your data for secondary purposes, such as register research, more information is available at the website of the Office of the Data Protection Ombudsman.