The pilot in preparation for the implementation of the European Health Data Space utilizes Findata’s unique experience and practical expertise in the implementation of the secondary use of health data.
The HealthData@EU pilot project is part of the European Union’s preparation for the cross-border secondary use of health data. The project builds a pilot version of the European Health Data Space (EHDS) infrastructure for the secondary use of health data.
“The project includes horizontal and technical work packages. The goal is to build and test the whole user path from the data catalogue to applying for a permit and analyzing the data,” tells Findata’s Chief Metadata Specialist Peija Haaramo.
The European Commission’s proposal for a regulation on European Health Data Space was adopted in May 2022. One of the objectives of the regulation is to promote the secondary use of health data to improve healthcare services, research, innovation and decision-making. At the same time, the aim is to give citizens greater control over the use of their health data in their own country and in other EU countries.
“The end goal is a harmonised regulation that will remove barriers to the cross-border use of health data while at the same time increasing the level of data protection,” says Haaramo.
Findata’s experience is useful in development work
In the pilot project, Findata leads the development of a common data access application form. The form will be used to submit and process permit applications in all EU countries.
“We have been able to utilise Findata’s nearly four years of practical experience in developing the form” tells Haaramo.
The pilot has included analysing the structures of secondary use of health data in different Member States and identifying good practices, similarities and major differences. The first version of the form was completed and sent for comments in the summer of 2023 and the final version is expected to be completed by the end of the year.
Next steps
The proposal for a regulation on the European Health Data Space will be on the agenda in the European Parliament plenary sitting in late 2023. The Parliament and the Council of the European Union will aim to form their positions during the rest of the year.
The aim is for the regulation to be dealt with before next spring’s European Parliament elections and to come into effect in 2025.
Findata applied for funding from the European Commission’s EU4Health programme earlier this year. The funding will be used to develop Findata’s services, such as our e-service, the national data catalogue and the Kapseli-environment platform, as well as to continue the work done in the pilot to develop a unified infrastructure.
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