This online discussion explores the evolving role of patient experts in the digital age. With a focus on the European Health Data Space (EHDS), the event will address how digital health data, artificial intelligence, and emerging regulatory frameworks are transforming the landscape of health research. Participants will reflect on the growing importance of patient engagement - not only as data providers, but as active contributors to research design, data governance, and innovation. Through expert insights, real-world examples, and open dialogue, the session aims to highlight new opportunities for collaboration between patients, researchers, and health institutions across Europe.

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Agenda (Riga time)

11:00 – 11:05     Opening Remarks. EATRIS Connect Welcome by Eliis Keidong

11:05 – 11:50     The Role of the Health Data Access Body in the New EHDS Regulation. The Netherlands experience by Dr. Ildikó Vajda

Ildikó Vajda holds a PhD in Neuroscience and has over eight years of experience in fundamental research. She later moved into applied research, modelling biological knowledge for AI systems. Since 2011, she has worked with patient organizations, healthcare professionals, and IT experts to make healthcare more patient-centred in the digital age. Since 2020, she has been with the Dutch Patients’ Federation, focusing on AI, data reuse, and ethics in digital health, both nationally and at the EU level. Her expertise bridges digital health innovation, co-creation, AI ethics, and health policy. Ildikó contributed to the Dutch Integral Care Agreement and serves on several steering committees and advisory boards on privacy, ethics, and AI. She also chairs the Societal Advisory Board of the Health Data Access Body currently being established in the Netherlands.

11:50 – 12:00     Open Q&A 

12:00 – 12:50     Roundtable - Patient Role(s) in the Digital Era

Moderated by Baiba Ziemele (patient advocate, Latvian Network of Patient Organizations), this session focuses on practical strategies for engaging patient experts in clinical research, with shared experiences and discussion on collaborative approaches.

Panelists: Executive Director of EUPATI – Maria Dutarte, the Head of Patient Engagement in Research at SJD Barcelona Children’s Hospital – Begonya Nafria Escalera, Patiëntenfederatie Nederland patient advocate Ildikó Vajda and the Head of the Stroke Research Group at Vall d’Hebron Research Institute and leader of the TRUSTroke project – Dr. Carlos Molina. 
                                
12:50 – 13:00     Open Q&A / Audience Interaction

The event is organised within the framework of the EATRIS-CONNECT project.