On 15 April 2026, the European Heart Network (EHN) organised a high-level patient workshop at the European Parliament, hosted by MEP Aurelijus Veryga (ECR, Lithuania) and supported by the EU-funded project AIDAVA.
The event brought together patients, policymakers, researchers and stakeholders to discuss data quality, trust and transparency within the European Health Data Space (EHDS), with a strong focus on the role of patients in shaping data-driven healthcare.
“When patients trust data, it leads to much better outcomes for patients and clinicians.” Wendy Davis, Patient Consultant, UK
“When patients trust data, it leads to much better outcomes for patients and clinicians.”
The workshop opened with institutional remarks from MEP Aurelijus Veryga and Leonardo Cervera Navas (European Data Protection Supervisor), who highlighted the importance of trust, governance and data protection in the implementation of the European Health Data Space (EHDS). As emphasised during the discussion, trust remains a key condition for enabling access to and use of health data, and must be built as a two-way process between patients, policymakers, clinicians and institutions. Speakers also underlined that EHDS is not only about data systems, but about empowering patients, enabling them to access their data, understand its benefits, and see clear value from its use in practice.
A session on the AIDAVA project provided a concrete example of how meaningful patient engagement can strengthen health data initiatives. Patient consultants, coordinated through organisations such as EHN, were fully involved throughout the project — contributing to requirements, validation and communication — and bringing valuable insights and a strong sense of purpose to the work. This approach reflects a shift towards patients as active partners in research and innovation, rather than passive contributors.
This was followed by a panel discussion exploring the relationship between data quality and trust, highlighting that both are essential for the success of EHDS. Participants emphasised that high-quality health data must be accurate, interoperable and relevant to patient needs, while trust depends on transparency, clear communication and strong governance frameworks. Discussions also pointed to the risks of failing to build trust, including limited data sharing and missed opportunities to improve patient outcomes.
The workshop concluded with interactive roundtables, where patients, researchers and stakeholders exchanged perspectives and co-developed recommendations. Discussions focused on the conditions needed to build trust in health data use, how to better align data systems with patient needs, and the role patients should play in governance and decision-making. Across groups, participants highlighted the importance of transparency, meaningful patient involvement and robust safeguards to ensure that health data systems deliver in practice for patients.
The workshop culminated in the development and endorsement of a Patient Call to Action, capturing key priorities for policymakers and stakeholders involved in the implementation of EHDS.
Patients call for:
This Call to Action reflects patients’ shared expectation that data systems must be implemented effectively across Member States to deliver tangible benefits in practice.
Watch the highlights from the workshop, capturing key insights from patients, policymakers and experts:
Explore all interviews and perspectives on EHN YouTube playlist