The 4th edition of the Health, Ethics, Law, and Technology (HELT) Symposium – organized by Vrije Universiteit Brussel’s (VUB) Health & Ageing Law Lab (HALL) – gathered policymakers, industry representatives, researchers and academics from various fields, for a full day of interdisciplinary discussions on the topic of the European Health Data Space (EHDS) Regulation: “EHDS Regulation, a Year On: From Vision to Reality”.

The Department of Innovation and Digitalisation in Law (ID Law) was represented by team members of four third-party funded projects: Catarina Almeida (“BBMRI.at”), Wolfgang Alexander Kolar (“PräNUDGE”), Klaudia Kwiatkowska (“eBRAIN Health”) and Ibrahim Sabra (“PHASE IV AI”). The workshop was introduced and moderated by Katarzyna Barud (European Commission - DG RTD).

Workshop

The ID Law team organised a workshop on the topic of Who will benefit from the EHDS? Benefit sharing in the framework of the EHDS Regulation. The group introduced the concept of benefit sharing in the context of the EHDS Regulation ecosystem and explained the points of contact of benefit sharing and the four projects, with emphasis on topics such as (i) return of scientific research results (both general and individual, in the framework of secondary use of data); (ii) the relevance of benefit sharing for vulnerable groups (such as research participants, or older age groups); (iii) opportunities and challenges on the use of privacy-enhancing technologies, such as synthetic data, and blockchain technology, including decentralised platforms, as well as the associated legal and ethical risks and (iv) the use of self-reported data in the secondary use mechanisms of the Regulation, and the suitability of these categories of data for benefit sharing.

Discussion outcomes

The workshop was attended by approximately 25 participants, of varied professional backgrounds, who were divided into four groups and had a productive exchange on questions related to the workshop’s theme. The workshop ended with each of the groups reporting on the outcomes of their discussions. Participants emphasised meaningful stakeholder involvement as well as transparency as decisive in enhancing trust in the secondary use of data under the EHDS framework. Additionally, the relevance of data altruism and data solidarity – especially considering commercial actors will be involved in the EHDS Regulation’s data sharing mechanisms – was highlighted during discussions. Participants also expressed strong interest in the concept of synthetic data as a secure technological solution that could help address existing gaps in access to health data. The discussion further underlined the need for clearer guidance on how technology providers can contribute to the EHDS ecosystem, as well as which bodies would be responsible for assessing and approving such technologies before their integration. Participants highlighted that a higher level of trust in wearable devices may positively influence the accuracy of self-reported health data, as users who trust the technology are more likely to engage with it transparently and report their data without distortion.
The ID Law team would like to thank the Symposium organizers, in the persons of Prof. Paul Quinn (HELT 2026 Coordinator) and Ashwinee Kumar (HELT 2026 Convenor) for making the event possible.

Funding information 

• BBMRI.at is funded by the Austrian Federal Ministry of Women, Science and Research, grant number 2023-0.752.780 (2023-2028).
• eBRAIN Health has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement No 101058516.
• PHASE IV AI is funded by the European Health and Digital Executive Agency under HORIZON Research and Innovation Actions, grant agreement: 101095384 (2023-2026).
• PräNUDGE is funded by Österreichische Forschungsförderungsgesellschaft mbH (FFG), FFG project number: FO999921937

Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union. Neither the European Union nor the granting authority can be held responsible for them.