How will citizens be informed of the projects carried out with their data ?
All rules relating to the protection of personal data, in particular the GDPR and the French Data Protection Act, are applicable to data processing carried out on the Health Data Hub's technological platform. Compliance with their proper application is placed under the control of the Health Data Hub Data Protection Officer (DPO), whose contact details are public on the Health Data Hub website.
The law of 24 July 2019 on the organisation and transformation of the healthcare system also entrusted the Health Data Hub with
a mission to inform citizens, the first expression of which was the publication of the
Health Data Hub's commitments to civil society.
The Health Data Hub also has a transparency obligation on all projects carried out with SNDS data in application of Article L. 1461-3 of the Public Health Code. Whether or not they are carried out on the Health Data Hub's technological platform, projects must make public their objectives, methods and results elements in
the project directory. Similarly, complete and up-to-date information on the databases made available by the Health Data Hub is available in the
database catalogue.
To find out more about the guarantees provided to civil society,
see the Health Data Hub's commitments to civil society.
Is citizen’s consent sought before the data is transferred on the Health Data Hub’s technological platform ?
A patient’s consent cannot be deemed to be obtained. It may have been requested by the data producer at the time of data collection, for example, if the patient voluntarily participated in a cohort. In some cases, it is not necessary. For example, when data are de-identified and re-used for research purposes. Nevertheless, the Data Protection Act then requires that individual be informed or, when this is not possible, that there is general information available that allows individuals to exercise their rights recognized by the GDPR and in particular their right to object.
All data on the Health Data Hub's technological platform is subject to the signature of an agreement with the producers of the respective databases. The data are therefore not made available without the knowledge of the organizations that collect them in the first place. The data producers are involved in the decision of the Ethics and Scientific Committee responsible for assessing requests for access to the data. They will therefore be able to alert it if they consider a project to be scientifically or ethically irrelevant.
For more information on the sharing of roles and responsibilities between data controllers and the Health Data Hub,
see the Health Data Hub's Commitments to Data Controllers.
