Vivre-Covid19 seminar: experiences and debates on health data sharing
An event organised in the framework of the French Presidency of the Council of the European Union
* This event is not organised by the French Government. It is however authorised by the French Government to use the emblem of the French Presidency of the Council of the European Union.
In this civic event held for the French Presidency of the European Union, the Health Data Hub (HDH) and France Assos Santé (FAS), in collaboration with Sanoïa and PariSanté Campus, invited you to discover French and European health data sharing initiatives and to discuss them with both speakers and participants. An opportunity to celebrate the two-year anniversary of the Vivre-Covid19 study.
9h30 - Introduction
- Gérard Raymond, President of France Assos Santé
- Stéphanie Combes, Director of the Health Data Hub
- Antoine Tesnière, Director of PariSanté Campus
9h50 - Sharing : a modern civic reflex ?
Digital technology is a social tool which, in the field of health, can contribute to health democracy. There are many kinds of health data and can be considered citizens’ common heritage. What are citizens’ expectations and demeanour regarding their own data? How can citizens participate in the development of knowledge and in national or European strategies?
- Jean-Baptiste Manenti, Responsible for relations with elected representatives and local organisations at the Conseil National du Numérique
- Frédéric Chassagnol, Vice-President of the Roche Foundation
- Pierre-François Jan, Deputy Director General of Pergamon, consultancy firm to the Roche Foundation
- Arthur Dauphin, Digital Health Policy officer at France Assos Santé
- Wannes Van Hoof, Scientific partner from Sciensano, team leader for citizen involvement at Sciensano
10h30 - What role do citizens and patient organizations play in projects ?
The participation of citizens and patient organizations in health data sharing projects is essential. However, is there but a single role? A consultative, contributory, productive role or more? Several concrete experiences in France and in Europe will shed light on this subject.
- Laura Létourneau, Ministerial Delegation for Digital Health
- Anne-Claire M., Member of the civic committee on the governance of digital health
- Magali Leo, Advocacy Officer of Renaloo
- Jean-Luc le coz, Member of the board of directors of Renaloo
- Pierre Marquet, Head of the pharmacology, toxicology and pharmacovigilance department at Limoges University Hospital
- Anne Buisson, Deputy Director of afa
- Caroline Stalens, Head of the Public Health and Medical Research Department of AFM Téléthon
- Elisabeth Dupont, Regional Manager, International Diabetes Federation European Region
Break
11h40 - How to build a data sharing project ? The example of Vivre-Covid19
A health data sharing project can be built in several ways. However certain standards must always be met. We will discuss how to build a sharing project, based on experience from hospital data platforms, as well as from the Vivre-Covid19 study conducted by France Assos Santé : which actors to mobilise? which methodologies to use? which success factors to monitor?
- Arthur Dauphin, Digital Health Policy officer at France Assos Santé
- Hervé Servy, Director of Technology and Methodology - Sanoïa
- Katia Besnard, Participant in the Vivre-Covid19 study
- Jean-Louis Fraysse, Member of the scientific council of TousPartenairesCovid
- David Mallet, Clinical research director at Rouen University Hospital
- Emmanuelle Tixier, Director of Digital Development, Coordination of the Normandy DataLab, Normandy Region
- Gérard Le Goff, Member of France Rein Bretagne, user representative on the social and economic committee of the HUGO GCS
12h30 - Conclusion
- Pauline Lavagne D'ortigue, Head of the Public Innovation Mission, Interministerial Directorate for Public Transformation
- Alban Praquin, Director of "Open Innovation" projects, Public Innovation Mission, Interministerial Directorate for Public Transformation