Patient Data Sovereignty and Cross-Border Health Data Flows under EHDS
CybAlliance Open Seminar IV
How can we enable health research across institutions and countries while protecting patient privacy and maintaining trust?
Join us for an afternoon exploring patient data sovereignty and cross-border health-data collaboration in the context of the European Health Data Space (EHDS). Beginning with why patient data matters and why protecting it is essential, the seminar brings together legal and practical perspectives on patient rights, health-data standardisation and privacy-preserving research.
Who should attend?
Clinicians, researchers, health-data professionals, privacy and legal specialists, students, and anyone interested in responsible use of health data. No prior expertise in EHDS or OMOP is required.
Participation
Thursday, 12 November 2026 | 13:00–16:00 CET
In person: Intervention Centre (IVS), Rikshospitalet, Oslo University Hospital, Sognsvannsveien 20, Oslo.
Online: Joining details will be shared with registered online participants before the seminar.
This is an open, hybrid seminar. Participation is free. Please select either an In person or Online ticket when registering. In-person places are limited.
Preliminary programme
All presentation slots include time for questions and discussion.
13:00–13:15 | Welcome and introduction: Why patient data matters
Roufaida Laidi — Oslo University Hospital
13:15–13:45 | The EHDS legal framework: patient rights and obligations for data providers
Kirsi Talonen — University of Helsinki · Joining online
13:45–14:15 | Why bother with OMOP?
Kristin Oterholt Knudsen — Cancer Registry of Norway, Norwegian Institute of Public Health
14:15–14:35 | Break and networking
14:35–15:05 | The OUS perspective: privacy-preserving analysis with OMOP in federated oncology studies
Fatima Tauqeer — Oslo University Hospital
15:05–15:35 | Panel discussion
Balancing patient data sovereignty with cross-border research under EHDS
With Kirsi Talonen and Fatima Tauqeer, including audience questions.
15:35–15:45 | Closing remarks
15:45–16:00 | Informal discussion and networking
Talks and speakers
The EHDS legal framework: patient rights and obligations for data providers
Kirsi Talonen · Senior Legal Counsel, CIPP/E — University of Helsinki
In this presentation, Kirsi will give a brief overview of what the EHDS Regulation means in practice—both for primary and secondary use of health data—and how it will affect universities and hospitals in particular, both as data holders and as data users. She will also share Finland’s experiences with the secondary use of health data and how they are preparing for the EHDS Regulation in practice. The central question: is the EHDS regulation a possibility or a threat? The answer will largely depend on practical implementation. Kirsi will also participate in the panel discussion.
About the speaker: Kirsi Talonen is Senior Legal Counsel at the University of Helsinki, where she has supported researchers since 2021 on data permits, research agreements and data protection. She currently provides legal support to major medical research projects and helps prepare the university for the EHDS era.
Previously, she was the first lawyer and Data Protection Officer at Findata, the Finnish Social and Health Data Permit Authority, where she established its legal function. She has also worked at Helsinki University Hospital and has more than 20 years of earlier experience in Finnish public administration. Kirsi holds a law degree, a Master’s in European Studies and CIPP/E certification.
Why bother with OMOP?
Kristin Oterholt Knudsen · Senior Adviser, Cancer Registry of Norway, Norwegian Institute of Public Health
The presentation will introduce the OMOP Common Data Model and show how standardisation can support reuse of health data across institutions and countries. Drawing on our experience as a data partner, we will share practical examples of how OMOP and the OHDSI community enable collaboration and the development of reliable, reusable evidence.
About the speaker: Kristin Oterholt Knudsen is a Senior Adviser at the Cancer Registry of Norway, Norwegian Institute of Public Health. She works with standardisation and harmonisation of health data, with a particular focus on SNOMED CT, structured clinical information and the OMOP Common Data Model.
The OUS perspective: privacy-preserving analysis with OMOP in federated oncology studies
Fatima Tauqeer · Postdoctoral Researcher / Data Scientist — Oslo University Hospital
The European Health Data Space (EHDS) aims to make health data sharing secure and seamless, and hospitals are already showing that this is achievable. Drawing on Oslo University Hospital’s work in two federated oncology studies, DIGIONE02 and FALCON-Bladder, this talk demonstrates how privacy-preserving analysis with the OMOP Common Data Model works in practice today. Patient-level data stay inside the hospital, yet still contribute to European research.
The talk addresses practical challenges including local coding differences, data extraction decisions, and data quality work. It concludes with practical steps that put EHDS within reach for every hospital.
About the speaker: Fatima Tauqeer is a postdoc and data scientist at Oslo University Hospital, working on real-world data projects in oncology. She is involved in several international federated studies, including DIGIONE02 (DINASTY) in metastatic non-small cell lung cancer, VALO2, and the OHDSI network study FALCON-Bladder. She holds a PhD in pharmacoepidemiology.
About CybAlliance
CybAlliance—the International Alliance for Strengthening Cybersecurity and Privacy in Healthcare—promotes international collaboration in healthcare cybersecurity and privacy research and education.
Its partners are Norsk Regnesentral (NR), NTNU and Oslo University Hospital in Norway; Télécom SudParis / Institut Mines-Télécom in France; Goethe University Frankfurt in Germany; and the University of Colorado Colorado Springs in the USA.
Learn more: https://cyballiance.nr.no/
Contact: Roufaida Laidi — roulai@ous-hf.no