About the Event 

This workshop places patient perspectives at the centre of discussions on EHDS implementation. It aims to collect structured input on how data quality affects lived experience, where current systems fall short, and what conditions are necessary to build and maintain trust. Patients are not asked to assess technical infrastructures or regulatory models. Instead, they will articulate expectations, identify barriers, and clarify what meaningful and responsible data use looks like from their standpoint.

Drawing on experiences from initiatives such as AIDAVA, the discussion will explore how patient engagement can strengthen data governance and decision-making processes. The roundtable format is designed to generate concrete, patient-defined priorities for future action - particularly regarding transparency, safeguards, feedback loops, and sustained involvement.

The workshop will conclude with a clear, policy-facing call to action, consolidating patient input into key messages for EU decision-makers.

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