Data sharing is crucial for research. For biomedical research, pooled data from individuals is often needed to identify complex pathways and obtain replicable results. Optimal use of data for research can support healthcare professionals and policy makers in improving the health and well-being of citizens. At the same time, protecting the privacy of individuals and empowering them to look after their health well-being are key objectives enshrined in the EU General Data Protection Regulation 2016/679 (GDPR) and embedded in the current European Data Strategy. While the GDPR has harmonised legislation on the processing of personal data within the European Economic Area (EEA), substantial challenges remain for data sharing outside of the EEA. In particular, there are few alternative mechanisms to share health data for research with public institutions in countries such as the USA, and substantial questions remain with regard to the interpretation of the GDPR also in light of the recent decision by the European Court of Justice in the “Shrems II” case. This situation presents challenges as well as opportunities for researchers collaborating with peers outside and within the EEA in crucial areas of health research.
On this basis, the aim of the cross-sectoral round-table discussion was to explore challenges and opportunities related to sharing health data with a particular focus on the transfer outside the European Economic Area (EEA). The overall discussion fed the ongoing working group project on International Transfer of Health Data – jointly developed by FEAM, EASAC and ALLEA >> https://www.feam.eu/international-transfer-of-health-data-for-research/
The cross-sectoral roundtable was organized by the FEAM European Biomedical Policy Forum. Participation was by invitation only.
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The FEAM European Biomedical Policy Forum provides a platform for discussion on key policy issues for the biomedical community. The Forum is an initiative from the Federation of European Academies of Medicine (FEAM). It aims to bring together representatives from academia, research charities, industry, European and national trade associations and professional bodies, regulators, public health bodies, and patient and consumers groups. Partners join on an equal footing, regardless of size and type of organisation.