Processing health data for scientific research purposes in the EU and the UK

Sarah Tedstone, Nuria Pastor and Alex Beresford of Fieldfisher look across the legislative landscape, and identify challenges and common elements for a multi-jurisdictional model.

There is no doubt that scientific research is important to our society, but it often requires a large amount of protected special category personal data. This article explains the current legal landscape for scientific research activities under data protection law in the UK and the EU and how the forthcoming European Health Data Space (EHDS) and UK plans may change it.

Recently, the EU has created a draft European Health Data Space(1). The final version is expected to be formally adopted by the EU Council this coming autumn. The primary purpose of the EHDS is to allow individuals to take control of their health data and facilitate data sharing within healthcare systems across the EU. However, the EHDS also aims to provide a “consistent, trustworthy, and efficient system for ensuring health data for research, innovation, policy-making and regulatory activities”(2). The aim is to benefit individuals, health professionals and researchers but generally also the industry, which should have greater availability of electronic health data for research use. The UK also has future plans to improve research conditions including within the new draft Data Protection and Digital Information Bill.

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