Unique 50 year database of “sanitised” Finnish digital health records available for researchers

Finland has collected an almost complete set of the populations’ health and social records going back to the 1970’s. That is a huge achievement.

Nobody knew back then that these records could later be used for medical research.

Finland is one of the few countries in the world to have such comprehensive data for almost the whole population – Denmark comes close.

The whole data set is stored securely, and only the patients and their doctors are authorised to see private data. Other users only have access to anonymised data – data from which all personal information has been removed, making it impossible to identify the patient. Users can give an explicit authorisation for specific research, but this is rare.

However, there have been major problems in getting the anonymised data (called officially “secondary use of health and social data”) to researchers. Up until now, licensing was granted by one or more of some 20 official bodies, and in many cases the data had to be collected manually.

It could take years for the data finally to be available for researchers. This stunted research projects, disease prevention, and new innovations for public health. The situation has become so unsatisfactory that a new law, supported by all of the political parties is presently before Parliament.

The new Act on the secondary use of health and social data aims to ensure flexible and secure use of data by establishing a centralised electronic licence service from a licensing authority.

The Government estimates that the Act will increase research and innovation for public health, disease prevention, and the development of new treatment methods.

For individuals, it would mean better services and treatment in healthcare and social welfare and more effective medicines.

The licensing authority is expected to generate new high-level business and research activities and thereby create new jobs in Finland.

In the future, one licensing authority would grant the licences and process the data requests regarding the secondary use of health and social data.

The licensing authority would receive the applications and requests directly from the electronic system and will minimise data security risks and prevent any accidental unauthorised access.

Currently, citizens can access all of their electronic health records on http://www.kanta.fi/en/

The Government proposal is included in the 2018 draft budget and will enter into force on 1st January 2018.

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