The view from UCL: Recommendations on proposed European Health Data Space regulation

Dr Petros Terzis, Research Fellow on the Regulation of Computational Infrastructures, has published a new policy brief: Change (s)pace: Recommendations and amendments for the European Health Data Space regulation.

Change (s)pace: Recommendations and amendments for the European Health Data Space regulation

The briefing examines core aspects of the European Health Data Space (EHDS) proposal, offering recommendations for centring the legislative and parliamentary debate on the rights of individuals and the collective value of public health. 

It highlights that caution is required in relation to the EHDS due to the scale of the enterprise, the sensitive nature of the data in question and the likely long-term impact of the proposed regulation on health data governance in the European Union. 

The recommendations and proposed amendments identified are designed to inform Members of the European Parliament (MEPs) and wider EU policy communities ahead of a vote on a draft report in the ENVI and LIBE committees in the European Parliament, expected in July 2023.

Dr Petros Terzis said: "The EHDS is an ambitious initiative but in its current form, it risks creating more problems than solutions. The proposal attempts to cover too much in one go, from electronic health record systems to interoperability to the secondary use of electronic health data. Each aspect requires proper scrutiny. We need to be mindful of who stands to benefit from access to sensitive data, as well as aware that clinical and medical researchers don't necessarily need more data, but rather better and more comprehensive data."

This article was first published on 12 June by UCL.