From this month (May) and running to August this year (2018) AEGLE — a project co-funded by the Horizon 2020 Framework Programme of the European Union — is going to provide details on health data protection across Europe.
Data breach
These reports follow on from the General Data Protection Regulation (GDPR), which came into force on 25 May this year, and will detail how European countries process health data. There will be a report for one country each week.
The data has been collected from four different member states of the European Union. Initially, the question of whether it is permitted to process personal data, in particular health data for research purposes, was asked. Each country answered this differently, despite the directive on the protection of individuals in relation to the processing of personal data and on the free movement of such data (Directive 95/46/EC) being adopted in 1995.
While this directive provided for a certain degree of harmonisation of the data protection legal frameworks throughout the European Union, divergent rules have remained, specifically concerning the re-use of personal data without the informed consent of the data subjects.
Additionally, the project looked at how the implementation of GDPR would affect this state of play and harmonise the rules applicable to data processing for scientific research in the European Union. A legal assessment addressing these issues was prepared for the AEGLE project based on country reports comparing the situation under the previous regime and the GDPR, while applying the new rules specifically to the AEGLE platform.
These country-specific reports will be primarily focused on the framework applicable to the AEGLE Platform. However, they will also provide a valuable source of information to anyone interested in learning more about on the data protection aspect of scientific research in the field of healthcare and the changes it is undergoing and willing to apply them to a European research project.