Info

Coordinating Institution
Health Data Hub
National node website
The Health Data Hub
National Node Description

Provided for by the 24 July 2019 Law on the organisation and transformation of the healthcare system, the Health Data Hub is a public structure whose objective is to enable project coordinators to easily access pseudonymized data hosted on a secure platform, in compliance with regulations and citizens' rights. Using the Health Data Hub platform, project leaders are able to cross-reference and analyse the data in order to improve the quality of care and patient support.

Contact person for health information portal
Louisa Stuwe
Governance and legal framework
Legal framework and institutional responsibilities

 

Provided for by the 24 July 2019 Law on the organisation and transformation of the healthcare system, the Health Data Hub is a public structure whose objective is to enable project coordinators to easily access non-nominative data hosted on a secure platform, in compliance with regulations and citizens' rights. Using the Health Data Hub platform, project leaders are able to cross-reference and analyse health data in order to improve the quality of care and patient support.

 

Relevant legal texts:

 

Health information strategy

 

Digital health roadmap (Ministry of Health)

 

 

Health information sources and players
Main players (institutions)

 

The SNDS : French National Healthcare Data System

In France, the national health care data system (or SNDS) is managed by the  National Health Care Insurance Fund called the CNAM. 

The SNDS is a database gathering pseudonymised medico-administrative data covering the entire French population thanks to data collected from reimbursements of healthcare by the CNAM. In this database, individuals are identified by an ID_SNDS identifier, which is currently generated by applying two pseudonymisation functions (FOIN 1, FOIN 2) to a vector of information on the person: social security number (or NIR) of the person entitled to benefits, date of birth of the beneficiary, sex of the beneficiary. 

The SNDS was created in 2016 building on the SNIIRAM (National Inter-Scheme Information System of the Health Insurance which was created in 1999 to constitute a national database of medico-administrative data to improve the management of the National Health Care Insurance Fund (CNAM), to contribute to better decision making in healthcare, improve the quality of care care as well as to provide healthcare professionals with relevant information on their activity. 

 

The Health Data Hub: a unique gateway to healthdata 

In 2019, the Law on "the organisation and transformation of the health system" has expanded the SNDS, initially a single base, into a system of databases.That same year, the Health Data Hub is created and is authorised to make data from the expanded SNDS available. (More details in the Health Information Sources section) The Health Data Hub guarantees easy, unified, transparent, and secure access to health data to improve the quality of care and patient support. 

It is a public interest group set out by ministerial decree, mainly publicly funded and bringing together 56 stakeholders divided into 9 group including notably state, national health insurance fund, healthcare professionals, hospitals/healthcare structures, research and teaching ecosystem, users...

 

 

Data protection
National data/privacy protection regulation and specific data access policies

 

Overview of the steps of receiving ethical approval, data protection validation, and data access approval

Two committees are involved in providing the authorization for data access.

First the National Ethics and Scientific Committee (CESREES) evaluates 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. Its report is passed on to the National Commission for Data Protection and Liberties (CNIL) which gives authorization for data access based on criteria of data protection and respect for citizens' rights.

The data, within a well-defined scope, will be accessible to project coordinators contributing to the public interest, following approvals of CESREES and CNIL respectively. 

 

Note:

Any private actor requesting access to the data will, just as public actors, have to prove that the project is of public interest. 

 

 

 

Health information infrastructure and management
Health information infrastructure and management

 

The Health Data Hub currently provides access to the National Data System (SNDS) databases (refer to the HI Sources section for details).

The Health Data Hub supports researchers and innovators by providing secure project spaces through its technological platform. Each project space allows users to receive, store, process and visualize health data securely and easily for the duration of the project.

Various software tools are available in the interface, including open source algorithm development software (R, Python, Spark, etc.) and collaborative tools (git).

→  Container orchestration Ubuntu Windows 10 Languages ​​and related tools Python 3 (with Anaconda) R (with R Open)  development tools Jupyter Notebook (R, Python, Julia, PySpark) R Studio Desktop Visual Studio Code, Vim, Emacs, Atom git Visualization and office automation LaTeX navigateur (Firefox / Chrome) Machine Learning & AI Packages standard machine learning (R, Python) Xgboost + LightGBM Weka Rattle Scikit learn Some plots (Python : seaborn, matplotlib, R : ggplot) Deep Learning Tensorflow CUDA Keras Pytorch Various tools Internal git server PostgreSQL Spark Cluster

 

Our service offering: https://www.health-data-hub.fr/offre-technologique

 

 

Existence of a unique patient identifier or general personal identifier?
Yes
Name of identifier
NIR, pseudonimized
Updated on 05 August 2022