Today, it is impossible to think of health care or research without the use of digital technology and AI-based tools – all of which rely on the use and re-use of the personal data of citizens and patients. The latest proliferation of EU laws stemming the European Data Strategy has led to a complex legal framework to comply with (as developer) and rely on (as citizen). The promise of new policy initiatives is to make more data available for (re)use, while empowering citizens with respect to the control over their personal data. In this respect, citizen involvement is crucial but many questions as regards its operationalization remain open. Ethical principles-based frameworks (such as the Belgian 8 caring technology principles) promise to ensure a central place for the user in the design and development of new technologies.
An interdisciplinary and international panel, including Stefan Gijssels (chair of the Patient Expert Center), Dr. Magdalena Eitenberger (social sciences, University of Vienna), Prof. Tom Braekeleirs (digital medical technology, Ghent University), Gauthier Chassang (law, French National Institute of Health and Medical Research) and Erik Laes (VITO) has explored citizen involvement in health tech development and the role ethical principles-based frameworks could play to foster it (moderation by Dr. Teodora Lalova-Spinks, Ghent University).
The recording of the discussion is now available on the new YouTube Channel of Metamedica.
Link: https://www.youtube.com/watch?v=Vh9cc0e7AiQ
Prof. Tom Braekeleirs (Ghent University, Belgium) described the perfect storm of today’s health care (from changing demographics through budget cuts and multi-crises) and stressed the importance of empowering citizens and professionals with the support of technology that remains “as invisible as possible, but as present as needed.”
Gauthier Chassang (Inserm, France) outlined the complex European ethico-legal framework supporting inclusive AI governance. He walked us through examples of multi-level citizen engagement: from involvement in the normative process on AI to co-design in AI development and use. Among his key conclusions was that a main challenge to successful participation remains improving knowledge of AI among healthcare professionals and the global population.
Dr. Magdalena Eitenberger (University of Vienna, Austria) discussed solidarity-based data governance and its three pillars: 1) facilitating data use that creates significant public value, 2) harm prevention and mitigation, and 3) “taxing corporate data use that creates little or no public value. As the concept of public value is central to data solidarity, a team of researchers led by Prof. Barbara Prainsack has created a tool for its assessment (PLUTO), which was presented.
Stefan Gijssels (Patient Expert Center, Belgium) made a compelling case for integrating the patients “collective intelligence” in healthcare decision-making. Patients offer unique insight across the care continuum. The importance of formal representation, training, and financial support to enable patients to participate meaningfully was highlighted.
Erik Laes (VITO, Belgium) discussed citizen empowerment from the angle of self-management through data, and the importance of enriching healthcare with data from outside of clinical practice. The WeAre project was presented, with its goal to enable people to interact with their data, make informed consent decisions, and understand who can access their data through data vaults.
The webinar was organized with the support of Metamedica and GHALL – Ghent Health Academy for Lifelong Learning, and as part of the activities of the Caring Principles for Health Innovation (CAPRHI) cluster at the Department of Public Health and Primary Care, Ghent University (supported by the King Baudouin Foundation).
Stay tuned for more!
Speakers
| Stefan Gijssels
Patient Expert Center
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Stefan is Chair of the Patient Expert Center (PEC). The Patient Expert Center is an organization that trains members of patient organizations to become patient experts in their disease area. He is also member of the board of Alzheimer Liga Vlaanderen and advisory member of ProLong, the lung cancer association. He is author of the book “De Stem van de Patiënt” (The Voice of the Patient), that was published in 2025. Stefan Gijssels is the co-founder and former CEO of Digestive Cancers Europe.
After having worked for many years at Johnson & Johnson, Stefan became a patient advocate because of his experience with metastatic colorectal cancer, diagnosed and treated in 2015. |
| Dr. Magdalena Eitenberger
University of Vienna, Department of Political Science
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Dr. Magdalena Eitenberger is a social science researcher of health technologies and inequalities. In her position as a PostDoc researcher at the Center for the Study of Contemporary Solidarity at the University of Vienna, she works on topics related to data solidarity, digital health technologies and data, telemedicine, patient and healthcare workers safety, gender in medicine, as well as ethics of digitalization. She has been a research fellow at Columbia University, Stanford University, and Bonn University. |
| Prof. Tom Braekeleirs
HINT.Gent
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Tom Braekeleirs is an innovation leader in the field of digital health. He has over 25 years of experience in the IT industry, having worked for companies such as EDS-AT, Kearney, Navision, and Microsoft. In 2023, he became a visiting professor of Digital Medical Technology at Ghent University (Faculty of Medicine and Health Sciences), focusing specifically on AI in Healthcare. He’s also a speaker and moderator at Nexxworks. Before this, he was CEO of BlueHealth Innovation Center, a non-profit organization active in digitization in healthcare. He is an advisor, podcaster, speaker, lecturer and columnist on all things digital in health. In 2022, he received the PRoF Award for Innovation for his contribution to advancing digital innovation in healthcare. |
| Erik Laes
VITO
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Trained as an engineer and ethicist of technology, the NEXUS between technological innovation and society is part of Erik’s DNA. At VITO NEXUS (2019-present), Erik’s field of expertise is in the governance of transitions – i.e. the politics and policy of steering complex technological systems towards more sustainable futures. His main research interest lies in the governance of the energy transition, but recently Erik has also broadened his horizon to responsible use of data in personalized and preventive medicine, in particular through his engagement in the WeAre health project which empowers citizens to take active control over their health data. |
| Gauthier Chassang
French National Institute of Health and Medical Research (Inserm)
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Gauthier Chassang is a legal expert specialised in European law, scientific research ethics, artificial intelligence governance and data protection. Since 2010, he has worked at INSERM (National Institute of Health and Medical research), providing legal and ethical guidance to research professionals, research infrastructures and government. Based at the Toulouse Faculty of Medicine, he collaborates on national and European research projects in the field of health technologies. His publications explore the impact of new technologies and new regulations on science, AI developments, biobanking, genetics and risk governance practices. His analyses provide insights on how to improve regulations or practices in a way that respects fundamental human rights and freedoms while allowing for groundbreaking scientific advances and discoveries. Additionally, he is involved with the Research Data Alliance, contributing to discussions on AI and data governance at international level. |
| Dr. Teodora Lalova-Spinks (Moderator)
Ghent University/ KULeuven
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Dr. Teodora Lalova-Spinks is a lawyer by training, specialized in health research and data protection and holding an interdisciplinary PhD in Pharmaceutical Sciences and Laws (KU Leuven, 2023). As a postdoctoral researcher at Ghent University, she is part of the “Symphony of Us” project, an inter-university cooperation between UGent, AP Hogeschool Antwerpen and ULB, supported by the King Baudouin Foundation and aimed at better understanding and implementing the concept of “Patient Value” in oncology research. Her focus within the Symphony of Us relates to exploring and implementing patient value from a societal perspective, particularly with respect to health data (re)use, the applicable legal frameworks and in view of the implementation of the European Health Data Space Regulation. |
