20 May 2019 - Authored by:Laurie-Anne Ancenys
The French Office parlementaire d’évaluation des choix scientifiques (the Office) has published a report on artificial intelligence and health data following the public hearing organised in February 2019, in the form of two round tables on artificial intelligence and health data.
The hearing, attended by AI researchers, entrepreneurs, public and private stakeholders of the health sector provided an opportunity for open discussions on the launch of the Health Data Hub, a unique platform opening the access to health data for health professionals, industrial, start-ups, researchers, and private companies. The Health Data Hub is a major initiative to promote innovation and artificial intelligence in the health sector in France.
While the opportunities of a unique health database are significant (e.g., the development of the digital patient identity through the matching of biologic, behavioural data; for diagnostic assistance or therapeutic progress, the algorithm could be trained on health data combined from different sources and enable the improvement of new medical services assisting health professionals, such as e-health and e-diagnosis), the report also addresses the significant challenges in the exploitation and protection of these data.
Promoting trust through the protection of personal data
The director of compliance of the French data protection authority (CNIL), Thomas Dautieu, spoke about the essential role of the CNIL in the governance of the Health Data Hub, highlighting the importance of providing patients with transparent information on the use of their personal data – notwithstanding that such data have undergone pseudonymisation – to ensure an environment of mutual trust and ethical values.
Encouraging data sharing through a flexible and interoperable platform
In focusing on the technical challenge, the report highlighted the necessity to provide effective incentives in terms of security and interoperability for all stakeholders to encourage them to share the data on the Health Data Hub. These technical challenges are directly related to the debate regarding the agile governance of the Health Data Hub to ensure efficient cooperation between public and private entities. Indeed, several speakers questioned the choice of the legal status of the platform, stressing the lack of flexibility of the public interest group (GIP) and, therefore, advocating for the creation of a Société par action simplifiée (SAS).
The Office submits proposals for an effective and controlled organisation of the collection and use of health data, in the context of the discussion of the draft legislation on the organisation and transformation of the health system currently under review by the French Parliament.
This post was co-authored by Juliette Olliveaud