Preguntas más frecuentes
What data are available on the Health Data Hub’s technological platform ? Is it true the Health Data Hub will be a gigantic health database ?
The Health Data Hub covers the National Health Data System (SNDS), i.e. all the health data associated with a H-health insurance reimbursement, whether collected during a hospital treatment, a doctor’s visit, participation in a research cohort or an epidemiological or practice register, etc.
All these data will not be collected in a single file - or even a single platform.
The Health Data Hub will collect copies of already existing databases in which directly identifying personal information has been removed. Only a selection of the most relevant databases will be replicated and regularly updated on the Health Data Hub's technological platform.
This collection of databases makes up the "catalogue", built up in a progressive and iterative way, in partnership with those responsible for the collection of the data concerned. The content of the catalogue is described on
the Health Data Hub website, as well as all the projects that will be carried out as a result.
To find out more about the sharing of roles and responsibilities between data controllers and the Health Data Hub, see
the Health Data Hub's commitments to data controllers.
Will the Health Data Hub host nominative data ? Can’t the data be fully anonymized ?
Compliant with
the security repository of the National Health Data System (SNDS), the Health Data Hub's technological platform does not receive nominative data.
The data are "pseudonymised", which means that directly identifying information such as surname, first name, date and place of birth, address, etc., has been deleted. They thus do not hold any information that could directly identify a person.
What is the difference with completely anonymous data? Perfectly anonymous data usually involve the aggregation of data. Examples include the number of cases, complications, medical procedures... Medical research, for example, requires access to finer data. To evaluate the effectiveness of a treatment on a typology of patients, one must look, for each patient, at the succession of events (hospitalisation, complication, improvement in clinical condition, treatments taken, etc.). Researchers do not need to know the identity of patients, but they need access to individual trajectories to analyse and compare them.
It is precisely because the data are not completely anonymous, but rather pseudonymous, that important security measures are taken to ensure that their confidentiality is respected. The data are therefore not published as open data. In addition, users are prohibited from attempting to re-identify individuals and are personally bound to this by signing the legally binding General Terms and Conditions of Use of the Health Data Hub technological platform.
For more information on the guarantees provided to civil society,
see the Health Data Hub's commitments to civil society.
Who will access this data ? Under which conditions ?
The data, within a well-defined scope, will be accessible to project coordinators contributing to the public interest, following an approval process involving
an independent committee (CESREES) and the National Commission for Data Protection and Liberties (CNIL).
Step 1. Project coordinators who wish to access the data make an access request to the Health Data Hub. They can be assisted in their request.
Step 2. The request is sent to CESREES. It verifies that the subject of the study is relevant and of public interest, that the data requested is in line with the project and that the proposed methodology is scientifically robust.
Step 3. On the basis of these elements, which characterize the purpose of the data processing, the CNIL is seized to give its authorization according to criteria of data protection and respect for citizens' rights.
Step 4. Once the CNIL's authorization has been obtained, the Health Data Hub team consolidates the required data and prepares a secure "project space" on its technological platform, which contains only the necessary data.
Step 5. Users of the technological platform have remote access to their "project space" and process the data on the platform without being able to retrieve it. The Health Data Hub can charge for access to its services.
Step 6. The project results are made public on the Health Data Hub website, with due respect for academic and industrial competitiveness.
Any private actor requesting access to the data will have to prove that the project is of public interest, another expression to define general interest for the benefit of citizens, in the same way as public actors. Both public and private actors are entitled to develop research and development projects with potential commercial purposes, but proof of the public interest of such research will have to be provided to the Ethics and Scientific Committee (CESREES).
Specifically, the law (
Article L. 1461-1 of the Public Health Code) explicitly excludes, and therefore criminalizes, any use of health data for the commercial promotion of products to health professionals. The same applies to any use that may lead to the exclusion of guarantees, changes in contributions or insurance premiums for a person or group of persons. Any infringement by the project carriers will lead to criminal prosecution.
As provided for by law, the data may not be sold.
For more information on the guarantees provided to civil society,
see the Health Data Hub's commitments to civil society.
