Following their partnership on health data and their commitment to improve the participation of civil society, the Health Data Hub and France Assos Santé wanted to involve citizens in their reflections. On the occasion of the e-consultation, they put this into practice by bringing together a small focus group, looking at how they perceived the consultation and its presentation. One of the objectives was to be able to start an open reflective process and to understand what keys they might be missing in reading the debate but also in the way it was addressed to them.
This debate on health data allows citizens to have their say. The latter were also involved in the very construction of this online consultation project. In particular, there was a group of several citizens who were mobilised to deepen the educational content around health data. Led by France Assos Santé and the Health Data Hub, these volunteers were able to discuss ways of producing clear, accessible and entertaining information for all citizens.
Different types of recommendations were formulated. First of all, for the group, the important thing was to raise general awareness on the subject of data. To do this, the important thing is not to display a whole range of information at once, but to show the essential. To do this, and drawing inspiration from the Facile A Lire et A Comprendre methods, the group insisted on the importance of producing and disseminating content that is not too dense, and of placing much more emphasis on visuals. And to allow citizens, once interested, to easily find more dense and complete information. Also, both necessary to understand the theme of this e-consultation on the second life of health data but also to hook the readers, according to the group, the primary entry point into the issue of health data is the difference between primary and secondary use of health data. Based on various discussions, the group proposed to co-construct a visual or infographic to illustrate this difference. This involved illustrating the sources of health data (hospitalization, outpatient medicine, connected objects, etc.), the ways in which the data is processed, and the benefits of using these data. It also made it possible to emphasise a few key concepts that were valuable to the group, including anonymisation, pseudonymisation and aggregation.
The Health Data Hub and France Assos Santé would like to thank the citizens who participated in this working group: Maëlys Jégu, Rosine Le Bail, Serge Lafargue, Jean Arnaud Elissalde.
Follow Robert and his health data on their trip. How does Robert's health data move along with him? And how can his health data be reused?
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