On July 1, MLCF held its symposium on Data for a learning healthcare system, marking the gradual retirement of Evert-Ben van Veen. During the symposium, a range of speakers discussed the drivers and barriers for making better, systematic use of health data to generate knowledge and improve healthcare, both in the Dutch and European context. The symposium was well attended with around 50 participants at the venue and the same number online. A big thank you to all who participated!
Evert-Ben van Veen gave a tour d’horizon on the history, values and future of ‘further use’, and why we should make the move from ‘me’ medicine to ‘we’ medicine. Geke Denissen (LROI), Yvonne Jorna (Nivel), and Tieneke Schaaij-Visser (Health-RI), each gave excellent presentations on the practical implications and experiences of making a learning healthcare system work in a Dutch context. Joakim Dillner, professor of infectious disease epidemiology at Karolinska Institute discussed the promises of exposome research in the European Health Exposome Network, and the move towards ‘precision public health’. Martin Boeckhout introduced the legislative proposal for a European Health Data Space and the opportunities this offers for furthering data-driven health research.
The symposium concluded with a roundtable discussion about how to reconcile solidarity, the right to health and informational self-determination, in which the speakers were joined by Irene Schluender, lawyer at TMF and legal officer to BBMRI-ERIC, Corrette Ploem, honorary professor in law, health care technology and medicine at the University of Amsterdam, and Cees Smit, patient advocate. Cees Smit’s contribution, informed by his own experiences of contributing to research about but also living with hemophilia, served as a powerful reminder of the tremendous impact health research can make on patients’ lives and of the importance of making a continuous effort for improving the learning healthcare system.
To view presentations from the webinar, please follow the links underneath.
1. The learning health care system: a national and European tour d’horizon – Evert-Ben van Veen, founder and director of MLCF – Presentation
2. How the Dutch national registry of orthopedic interventions helped improving orthopedic care and jumped through the regulatory hoops – Geke Denissen, director LROI – Presentation
3. Learning from Data: the Nivel experience with data from nursing homes and bias – Yvonne Jorna, Researcher Zorgdata en het Lerend Zorgsysteem, Nivel – Presentation
4. Towards structurally improved re-use of health data: Removing the obstacles for (re)use of health data for research and innovation in the Netherlands: a collaborative commitment towards a joint set of agreements under the wings of Health-RI – Tieneke Schaaij-Visser, team manager ELSI for Health-RI – Presentation
5. Making data work for health protection: the European Health Exposome Network – Joakim Dillner, professor of infectious disease epidemiology at Karolinska Institute and project leader of the HEAP exposome project. – Presentation
6. Learning health care and the European Health Data Space – Martin Boeckhout, senior consultant at MLCF – Presentation
7. Panel discussion “The learning health care system and patients’ interests: how to square solidarity, the right to health (protection) and informational self-determination” – Cees Smit – Presentation
8. Future plans – Jorg Janssen, Lygature and Evert-Ben van Veen, MLCF – Presentation