International sharing of personal health data for research

Its authors call for solutions to overcome the barriers to ensure timely and straightforward research collaboration in the public sector in the interest of health benefits for European citizens. Delegated by the Swiss Academies, Christian Lovis, Professor of Clinical Informatics at the University of Geneva and of Medical Information Sciences at the Geneva University Hospitals, contributed to this report.

The EU’s General Data Protection Regulation (GDPR), effective since 2018, affects the transfer of public sector health data to institutions outside of the EU/EEA and the possibility for researchers from outside of the EU/EEA to remotely access data at its original location. More than 5,000 collaborative projects were affected with the US National Institutes of Health (NIH), for example, according to an estimate for 2019. The authors of the academies’ report stress that a solution is urgently needed, both for ongoing research collaborations as well as for new studies.

Pages: 60 p.
Standard identifier: ISBN 978-3-8047-4249-9 / DOI: www.doi.org/10.26356/IHDT