The Knowledge Centre Data & Society is pleased to invite you for a talk on the European Health Data Space by Dr Gabriela Lenarczyk on Tuesday 19 May in Leuven or online.
The European Health Data Space as a patient-centred model
The European Health Data Space (EHDS) is often described as a framework for enabling the use and reuse of electronic health data across the EU. This talk examines what it means to place the patient at the centre of that framework. It focuses on the EHDS as a governance system built around both individual rights and collective interests: access to one’s own health data, portability, cross-border care, restrictions on access, transparency over who has accessed data, and the right to opt out of secondary use.
At the same time, the talk will consider some of the tensions created by this patient-centred model. Opt-outs may strengthen autonomy and trust, but they may also affect data quality, participation and representativeness. Similarly, greater access to health data may support research, innovation and public health, but only if governance mechanisms are understandable, usable and perceived as legitimate by patients and citizens. The talk will therefore ask how policymakers, researchers, healthcare actors and data users can implement the EHDS in a way that treats patients not just as data sources, but as rights-holders and participants in a shared health-data infrastructure.
