The European Health Data Space (EHDS) is one of the EU’s most ambitious digital health initiatives, aiming to create a common framework for the use and sharing of health data across member states and serving over 250 millions indivduals and every actors of the health economy. It has been praised for its promises. If successful, it would put Europe at the forefront of Digital Health. But EHDS also faces pitfalls that could limit its effectiveness.
The Pre-event Genomic data and the European Health Data Space by NextGen project will contribute to the debate by considering the thorny question of genomic data through the lenses of different professionals all united in the vision that barriers are challenges to overcome, sources of progress.
NextGen – an EU Horizon project – is building tools to better integrate and use health-related real-world and research data, including genomics, to improve clinical outcomes. By focusing on personalised cardiovascular medicine, it creates a secure research environment where a health data space can be developed for the safe and efficient use of AI in cardiology.
In short, NextGen can be seen as a Petri dish for digital health tools: a safeguarded space to experiment, test, and accelerate innovation.
The event will confront the experience and challenges faced by three practitioners involved in the building of EHDS and will conclude by diving into the expectation of a clinician as the user of EHDS.
This event will feature:
Petra Ijäs, MD, PhD, MSc, is a stroke neurologist and researcher based in Helsinki, Finland. She currently serves as Head Physician at Helsinki University Hospital and Adjunct Professor of Neurology at the University of Helsinki. With over 20 years of clinical and academic experience, Dr. Ijäs specializes in stroke medicine and neurovascular disorders. She leads a translational research group at Biomedicum Helsinki, focusing on carotid atherosclerosis and stroke, and actively mentors doctoral students.
Sofia Kuitunen is a legal expert specialized in regulatory matters related to use of health data, health technology, data protection, AI and data transfers. Currently, Sofia works as Senior Legal Counsel for a large multinational genetic project (FinnGen) at the University of Helsinki and provides legal expertise tailored to innovations in genomics and life sciences, bridging the needs of both research and business. By education, Sofia holds a Master of Laws degree and Bachelor of Science degree in Pharmacy.
Johan Bokslag is programme manager for Health Data Space Utrecht (HDSU), one of the 8 nodes of the Health Research Infrastructure (Health-RI) project, started in 2022 in advance of the EHDS. Johan started his career at IMS Health. Amongst others Johan was program manager in the banking industry and as such involved in the Legal Demerger and Merger of ABN AMRO Bank N.V. Another assignment was the development of recovery and resolution plans for ABN AMRO Bank based on the European Bank Recovery & Resolution Directive, that just had entered into force.
Mikael Rinnetmäki: I search for sustainable business models for digital health solutions as the founder of diabetes startup Sensotrend, advance interoperability between healthcare IT systems as a volunteer in the standards organization HL7 International, and advocate for patients’ access to high quality treatment as the chair of the Regional Network of Diabetes Associations in Pirkanmaa. I live with type 1 diabetes and hold a M.Sc. in computer science.
Philippe Page, PhD, leads the Data Management work package of the NextGen project. He is also the Head of the Research Council at the Human Colossus Foundation, a non-profit Swiss based foundation whose mission is to develop open-source protocol for buiding sovereign data ecosystems. Philippe holds a PhD in theoretical physics. After a post-doc at McGill University in Canada, his career moved to the private sector through risk management in finance. This gave him a wide exposure to the necessity of multi-jurisdiction governance systems and lead him to the role of Chief Operating Officer of a Geneva based private bank. Since 2020, Phillppe fully concentrate his efforts in the development of a Dynamic Data Economy at the Human Colossus Foundation.
This workshop is an pre-event of the MyData 2025 conference and it is open to all conference ticket holders without separate registration. Others interested in this workshop may register for a spot here.
This session is hosted by Christopher Wilson.
