Friday July 1, C-Beta, Hoofddorp, The Netherlands and online (programme from 13h-18h, online 13.30-17.00)
Healthcare and health protection have always evolved by learning from learning form what patients experienced first of all. The loop from practice to improved health care and health (protection) policies mediated by patient data and patient experiences being used for benchmarking, research, and public debate, is nowadays recognised as a ‘learning health care system’. How does this work in practice? What are drivers and barriers for such a learning health care system to come into fuller fruition, in the Netherlands as well in Europe? What role did the GDPR play in this respect and what role might the coming European Health Data Space (EHDS) play in the future?
These issues will be explored from various angles at this symposium. A range of speakers will introduce practical and professional experiences with patient registries, (observational) health research, and will discuss and debate recent regulatory developments and the various values or ethical principles which are involved in data sharing, an essential requirement for enabling a learning health care system to work. The presentations will be concluded with a panel discussion.
This symposium should offer new insights which can lead to improving learning health care systems in the future. It also marks the occasion of MLCF founder Evert-Ben van Veen’s 70th birthday and his gradual retirement of MLCF.
Cees Smit, one of our speakers,, exhibits paintings from his series of nostalgic gas stations at the venue. MLCF offers a painting of choice to one of the attendants of the symposium (lots are distributed during the break).
Please register for attendance here.
Programme:
13.30-13.40 Opening
Moderator: Marius Buiting, director NVTZ and member of the MLCF supervisory board
13.40-14.00 The learning health care system: a national and European tour d’horizon
Evert-Ben van Veen, founder and director of MLCF
14.00-14.20 How the Dutch national registry of orthopedic interventions helped improving orthopedic care and jumped through the regulatory hoops
Geke Denissen, director LROI
14.20-14.35 Learning from Data: the Nivel experience with data from nursing homes and bias
Yvonne Jorna, Researcher Zorgdata en het Lerend Zorgsysteem, Nivel
14.35-14.50 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
14.50-15.15 Break
15.15-15.35 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
15.35-15.50 Learning health care and the European Health Data Space
Martin Boeckhout, senior consultant at MLCF
15.50-16.30 The learning health care system and patients’ interests: how to square solidarity, the right to health (protection) and informational self-determination?
Round table with:
- Cees Smit, patient advocate;
- Irene Schluender, lawyer at TMF (Germany) and legal officer to BBMRI-ERIC and other EU research projects;
- Loes Markenstein, senior inspector at the Dutch data protection authority;
- Corrette Ploem, honorary professor in law, health care technology and medicine, University of Amsterdam / AUMC
Together with the participants at the symposium
16.30-16.40 Break
16.40-16.50 Future plans
Jorg Janssen, Lygature and Evert-Ben van Veen, MLCF
16.50-17.00 Closing
Moderator Marius Buiting
17.00-18.00 Drinks