Patients call for trust and transparency in the European Health Data Space

On 15 April 2026, AIDAVA supported a high-level patient workshop at the European Parliament, organised by the European Heart Network (EHN) and hosted by MEP Aurelijus Veryga. The event brought together patients, policymakers, researchers and stakeholders to discuss trust, data quality and patient involvement in the European Health Data Space (EHDS).

The workshop featured a session on the AIDAVA project as a concrete example of meaningful patient engagement in health data research, followed by a panel discussion and interactive roundtables. It concluded with the endorsement of a Patient Call to Action, calling for greater transparency and accountability, meaningful patient involvement in governance, and individual control over personal health data, among other priorities.

Video recordings from the event, including interviews with MEP Veryga, Leonardo Cervera Navas (European Data Protection Supervisor) and patient consultants, are now available on our Patients Advocacy Group Roundtable page.