The Patient as an Expert, even in RoIPD

Jul 22, 2026 | News

The sixth edition of the Italian EUPATI Patient Expert Course concluded in Rome on 13–14 February 2026, bringing together a new cohort of Patient Experts committed to strengthening patient involvement in healthcare decision-making and research.
A key highlight of the programme was the lecture by Johanna Maria Catharina Blom, coordinator of  the European project FACILITATE and Professor of Psychobiology at UNIMORE . Professor Blom highlighted how the project aims to develop an ethical and sustainable framework for the return of individual participant data (RoIPD) and responsible data sharing.
“FACILITATE places dynamic consent at its core, enabling patients to remain actively involved in decisions regarding the use of their data over time” stated Blom.

Professor Blom emphasised that transparency, trust, and meaningful patient engagement are essential for responsible data sharing and for building patient-centered health data ecosystems. The FACILITATE experience strongly reflects EUPATI’s mission of empowering patients to become active partners in research and health data governance.

EUPATI Italy, was proud to be a partner in the FACILITATE project and to contribute to advancing a more transparent, inclusive, and patient-centered approach to health data sharing and research.

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