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(en) France, UCL AL #317 - Digital, Health Data Hub: diagnosis of a controversy (ca, de, it, fr, pt)[machine translation]

Date Tue, 29 Jun 2021 10:29:17 +0300

We have regularly spoken in recent months in the news of the Health Data Hub (health data platform) launched by the government and propelled at a speed that makes any democratic debate difficult, in the name of the fight against the pandemic. Presentation of the project and the questions it raises. ---- Central project of the "National Plan for Artificial Intelligence", the Health Data Hub (HDH) aims to centralize all the health data of the French population: among others, those of town medicine, pharmacies, the system hospital, medical biology laboratories, shared medical records, occupational medicine, nursing homes and data from DNA sequencing programs.
Political, legal and technical questions
In theory, the project should improve the reception conditions for users of the health system, and its efficiency. Problem: the government has chosen to entrust the hosting and management of data to the Microsoft company, in the most total opacity and without real public consultation, even taking advantage of the state of health emergency to accelerate the process at pretext for an ever greater need. The situation is now presented as inevitable, but the project is at the center of many controversies.

Entrusting this massive healthcare market (prestigious and of enormous potential value because it weighs more than 12% of GDP) to a private IT giant, outside France, raises many questions, to the point that the Cnil, often docile, was greatly moved[1]. Many voices are raised against the HDH and a dozen associations are calling for its abandonment, as well as groups of doctors, lawyers, etc.

The political questions crystallize around the choice of Microsoft since it is a question of having a public good managed by a private actor, and without hope of reversibility[2]. It is also a political question of European digital sovereignty since this American actor is subject to American law, in particular the Cloud Act.

Legal questions concern consent and medical confidentiality. The European principles of the GDPR organize consent from the design of information systems and through a culture of transparency. Patient data affects their privacy, but the duration, the right of withdrawal and above all the clear purpose of using this data are intangible principles set by the Cnil, and already barely sufficient.

Towards a society of traces
The technical questions are revealed in a lively debate between centralization or interoperability of databases. Centralization prevents any anonymization of data, exposes more strongly to the risk of attack and does not make it possible to consider open source (open code) developments of clean technologies that would make it possible to keep only the good side of the coin, for example. example the possibilities offered by Blockchain technology.

The proponents of an alternative policy affirm the possibility of a management of the digital commons by self-organized communities (from Wikipedia to open data and free software). In the case of the HDH, it is also a question of separating on the one hand the qualification of medical data, which is done thanks to a collection and sorting work financed by the public sector and subject to the treaties of free movement of data, and on the other hand the enhancement of these data, with the commodification of health by the private sector.

As part of the project My Health 2022, the use of the national health identifier (INS) to reference the health data is compulsory since 1 stJanuary 2021. The serial is based INS[3]on the social security number of which the CNIL was opposed to the generalization of its use from 1983. The additional problem with this INS is that the teleservice implementing it adds five personal traits: birth name, first name (s) of birth, date of birth, sex, and place of birth. Gone is the relative anonymity of the social security number (now assigned from birth for holders of French nationality) in a world of open data (open data), even for health data. Especially with the proposed Decree of 15 January 2021 for the automatic opening of the digital health space (ENS) from 1 stJune 2021, unless opposed by the insured · e Social, the ENS will notably include[4] : the administrative data of the holder, including his INS, his shared medical file (DMP) but also "his health constants produced in particular by digital services or tools" as well as "a health questionnaire".

The risks associated with the project are therefore numerous: dehumanization, loss of autonomy, use against the interests of patients, commercial or malicious exploitation, breach of medical confidentiality and, as is often the case with the creation of new databases, a increased surveillance[5].

Algorithmic supervision
It is indeed difficult not to think about the social question of the sanitary control of our behavior, a fortiori in view of the observation of part of what comes from this period of pandemic. Today, the reign of personal data shows us a potential next shift to a society of traces, with the concepts of algorithmic governmentality and sousveillance, which is no longer surveillance, but supervising by a discreet, intangible grid. and omnipresent in all types of traces that we leave, through our data, increasingly materialized and collected.

Ed. (UCL Alpes-Provence)


[1] . The Health Data Platform, February 9, 2021

[2] "The use of health data on a Microsoft platform exposes you to multiple risks", Le Monde, December 10, 2019.

[3] Art. L1111-8-1 of the Public Health Code.

[4] Art. L1111-13-1 of the Public Health Code.

[5] "Health Data Hub: from the fantasy of artificial intelligence to the privatization of our health data"

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