Health Data Hub
Overview
The Health Data Hub (HDH) is the French national platform for health data access, created by the law of 24 July 2019 (relative à l’organisation et la transformation du système de santé) and formally established on 1 December 2019. It is structured as a groupement d’intérêt public (GIP) bringing together 56 stakeholders, the majority from the public sector, including CNAM, CNRS, the Haute Autorité de Santé, and patient associations. Its principal mission is to consolidate and make accessible the data of the SNDS (covering over 65 million people), and to host a broader catalogue of health datasets contributed by hospitals, registries, and research cohorts. Researchers submit projects via the HDH portal, which routes them through CESREES ethical review and CNIL authorisation before granting access to a secure analysis environment called the Datalab, from which no individual-level data can be extracted. Since the decree of 29 June 2021, the HDH shares joint data controllership of the SNDS with CNAM. Under EHDS, the HDH is France’s candidate Health Data Access Body (HDAB).
Data Standardisation
Since 2020, the HDH has led the standardisation of the SNDS base to OMOP CDM format, through two successive EHDEN (European Health Data and Evidence Network) project grants. The second project, validated in September 2023, covers a 3-million-patient cohort from 2015 to 2021, with mapping rules and transformation scripts published openly on the HDH GitLab. Source terminologies including CCAM, NABM, and CSARR are mapped to standard vocabularies such as SNOMED CT. This work positions the HDH as a node in the OHDSI federated research network and supports participation in cross-border studies under the EHDS HealthData@EU infrastructure. HL7 FHIR is used as part of the HDH interoperability framework alongside OMOP CDM, consistent with ANS national standards. The SNDS base remains coded in source terminologies (ICD-10 / CIM-10 for diagnoses, CCAM for procedures, LOINC for lab results) in its native form.
Connections
- Joint data controller of SNDS: with CNAM (since decree of 29 June 2021)
- Regulatory oversight: CNIL, CESREES
- European context: EHDS (national HDAB candidate)