24 Juin Health and big data: the French Health Data Hub
France is well-known for its social security system, admired by the rest of the world for it, but it is way less spoken about for its rich health data patrimony. These data are stored in multiple databases, possessed by several actors and governed by specific rules. In this context, a researcher, a startup, or a public authority wishing to access health data is facing red tape, long and complex procedures, at the opposite of the short-term required by innovation and business. Exploiting the potential of these data is nevertheless essential to boost innovation, support health practitioners and improve patients’ health. It is when the Health Data Hub comes in.
Health Data Hub, what is it?
The Health Data Hub is a public structure allowing project carriers to access qualitative, anonymous and centralized health data, and to be supported in the process of exploiting them.¹ Thus, its ambition is two-fold: first, it is about gathering health data coming from multiple sources and stored in softwares not always communicating one with the other; then, it is about making them easier to work with, while guaranteeing the security and quality of the data. The goal is to move from a rich but fragmented patrimony to a unique portal for health data: the Health Data Hub.
Its four missions are the following:
– Giving access to health data;
– Supporting the collection and consolidation of data;
– Increasing the value of health data;
– Supporting the ecosystem and maintaining the link with the citizens.
The Health Data Hub presents outstanding and numerous opportunities, which have in common their participation to general interest. Making available such an important database, never seen before, is crucial to boost innovation in the health sector, and thus allow a re-thinking of preventive, diagnostic and therapeutic approaches. Here are three examples of the very concrete potential of the Hub:²
– The development of tools to help diagnosis, decision-making and medical interpretation.
Example: a software able to notice a cardiac abnormality in the patient even if the cardiologist is absent.
The more numerous and qualitative the data, the better the tools, because they will take into account the very specific context of the individuals and produce the more accurate recommendation, based on these data’s analysis.
– Supporting medical decision-making for the practitioner and the patient.
Example : A patient with cancer may have a very complex medical journey. Medical decisions are thus sometimes very uncertain, concerning the efficiency or side effects of a treatment.
Gathering data from persons with similar illnesses, daily life contexts, and with specific reactions to treatments, allows a more precise predication of the efficiency/side effects of a treatment on a given patient.
– “Real-life” data analysis.
Example : If public authorities want to verify the efficiency of a medical treatment in real life, they may do so with data from outside a medical trial.
These three innovations are examples depicting the potential of the Health Data Hub in terms of public health, but also economically. France is a leader in health thanks to its social security system, and could become one in data-sharing and e-health, if the Health Data Hub holds its promises to reunite and facilitate access to health data for professionals of the public an private sector.
Health Data Hub, what’s at stake?, « Health Data Hub. Mission de préfiguration », 2018
Health Data Hub and Covid-19: what says the CNIL
When the Health Data Hub was first introduced, numerous controversies have erupted in the medical field, particularly concerning the security of data and their transfer outside of the European Union. Indeed, the hub chose Microsoft, an American multi-national company specialized in IT, to transfer and store these data. The situation has attracted strong criticisms, but has also underlined the incapacity of our firms to answer the growing digital needs of the healthcare sector. It is begging the question of a French digital sovereignty.
The CNIL eventually confirmed that the hub respected all the necessary criteria for security. Notwithstanding, it warned the Health Data Hub about the particular legal context of the Covid-19 crisis, which will come to a close in the next few months. It also reminded that « the creation of this data base, which happens in a particular context of emergency and global heath crisis, shouldn’t take for granted the current legal basis […]. After the end of the crisis, it wouldn’t be legal anymore. »³ In other words, it warns the hub against any abuse of authority justified by the current context, and reassesses the importance of respecting legislations preceding the Covid-19 crisis, to protect individual liberties and the health data of French people.
To learn more about the Health Data Hub:
Where do the health data come from?
SDNS (National System for Health Data)
Data from research and large national cohorts
Data from hospital and digital patient files
Epidemiological and practice recors
Data from the pharmaceutical files
Medical biology labs
Town medical practices
Contextual information/data (socio-demographical, environmental, academic)
Tele-medicine and connected medical technologies
Shared medical files (« Dossier médical partagé »)
Medical file for health at work (« Dossier médical en santé au travail »).
What happens elsewhere?
OptumLabs, in the US, share an important health database to allow public and private research. https://www.optumlabs.com/about/story.html
European perspectives. https://www.fda.gov/media/134068/download
Student in the Sciences Po-HEC dual-degree
Consulting intern at TechToMed
¹ Healthdatahub. « Health data hub | Plateforme Des Données De Santé | France ». Consulted June 16, 2020. https://www.health-data-hub.fr
² « Health Data Hub. Mission de préfiguration. » Pilotée par Marc Cuggia (CHU Rennes), Dominique Polton (INDS), Gilles Wainrib (OWKIN), et rapportée par Stéphanie Combes (DREES).
³ « La plateforme des données de santé (Health Data Hub) | CNIL ». Consulted June 17, 2020. https://www.cnil.fr/fr/la-plateforme-des-donnees-de-sante-health-data-hub