Activities
INNOVATIVE AND VALIDATED PROJECT
The Test Phase validated the conceptualised legal architecture. Thanks to Data Altruism and the mandate to exercise rights, it is now possible to receive - with the explicit consent of the Patient - rich, diversified health data that is as complete as possible, under unprecedented conditions. This data is intended to support general interest objectives in terms of public policy, healthcare and research into mental and brain health.
This test phase is currently being extended to anticipate any technical or human difficulties that may arise, to assess the quality of the data collected, and to prepare for the development of the European Brain Data Hub's IT platform. Two new patient volunteers have recently decided to contribute, and their mandates are currently being prepared.
However, there is still one stumbling block: Apple, the only company to definitively refuse to share the data requested by the patients recruited during the Test Phase. We are preparing the legal follow-up.
Program
• L’AI et le partage altruiste des données By Pr. Gregory LEWKOWICZ, professeur à l’ULB, directeur du SMART Law Hub.
• Fondation 101 Génomes By Ludivine and Romain Alderweireldt-Verboogen,
• AI en médecine aspects déontologiques et responsabilité du médecin By Pr.
Christian MELOT, vice-président de l’Ordre National des Médecins.
• AI en de juridische obstakels
By Pr. Tom GOFFIN, Ugent (tbc), Voorzitter van de Federale Commissie Rechten van de Patiënt
• L’European Brain Data Hub for the advancement of data sharing
By Pr. Roland Pochet, EBDH president
• Patient opinion
By Mrs Cécile Grégoire, coordinatrice de l’Action Parkinson