Legal challenges hamper the sharing of health data with researchers outside the EU/European Economic Area (EEA), a new report by European academy networks concludes. The authors call for solutions to overcome these barriers to ensure timely and straightforward research collaboration in the public sector and thereby maximize health benefits for European citizens.
In the report International sharing of personal health data for research, European academy networks ALLEA, EASAC and FEAM call on EU policymakers and legislators for a commitment to overcome the barriers in sharing pseudonymised health data with researchers outside the EU/EEA, including the ones from the public sector, preferably under Article 46 of the General Data Protection Regulation (GDPR).
Health data sharing benefits individuals and societies
“EU/EEA citizens strongly benefit from international sharing of health data by allowing researchers to make best use of limited resources and to ensure that research conducted elsewhere is also relevant for patients in Europe. This must be encouraged and facilitated to maximise the individual and societal benefits to be obtained from the contribution of research participants”, emphasizes George Griffin, co-author of the report.
In the joint report, the three European academy networks focus on how global sharing of health data benefits public research, describe the challenges imposed by data protection regulations, and provide possible solutions through adapting or expanding the existing legal framework.
Key takeaways from the report
- Health research is crucial for all: it benefits individual patients, population health, development of health-care systems, and social cohesion and stability.
- Sharing pseudonymised personal health data for public sector research is essential to make effective use of limited resources.
- Data must be shared safely and efficiently, taking account of privacy concerns: this is part of the conduct of responsible science and addressing these opportunities should be part of wider initiatives to build trust in research and researchers and to take account of patient views.
- Legal challenges have resulted in impediments to data sharing with researchers outside the EU/EEA, affecting both the direct transfer of data to non-EU/EEA countries and remote access to data at its original location.
- There must be increased commitment by the European Commission to urgently overcome these barriers in sharing data. Preferably, a simple and consistent operational solution would be found under Article 46 of the GDPR, whilst protecting the privacy of personal data from EU/EEA citizens.
The European Federation of Academies of Sciences and Humanities (ALLEA) and The European Academies Science Advisory Council (EASAC) are collaborative organisations for European science academies. The Council of Finnish Academies is a national member of both ALLEA and EASAC. The European Federation of National Academies of Medicine (FEAM) on eurooppalaisten lääketieteen alan tiedeakatemioiden yhteistyöorganisaatio.