Health Data Hub: an initial list of databases from the main SNDS catalog database

DSIH, TUESDAY 31 MAY 2022

The Health Data Hub announced this in mid-May First order publication with the list of bases that make up the main base of the catalogue national health data system and which contributes to the extension of the latter to all data funded from national solidarity.

Originally composed of medical-administrative data (treatment forms, hospital bills and medical causes of death), the catalog of the National Health Data System (SNDS) was expanded by the law of 24 July 2019 organizing and transforming the system to include all health data receiving funds from national solidarity . The aim is to expand the legacy of available data and thus contribute to a broader use of data. The Health Data Hub (HDH) emerged from the same law.

A great interest in the ecosystem

The SNDS includes data from registries, research cohorts and hospital data warehouses collected and organized by the HDH before being made available to foster innovation in the use of health data. By decree of June 2021, the HDH was given joint responsibility for processing the main database with the Cnam and full responsibility for the SNDS catalogue.

The main database consists of data from the entire population (Sniiram) or from health institutions (PMSI). It contains the medical causes of death (Inserm’s CépiDC), data on disability (MDPH and CNSA). It is enriched with the basics related to the epidemic (Covid vaccine and SI-DEP). The catalog is a collection of non-fixed databases to adapt to ecosystem challenges and needs. Its content will be determined by the Strategic Health Data Committee, chaired by the Secretary of Health and set up in July 2021. A decree of May 12, 2022 establishes its first composition.

It should be noted that only one copy of the data is transmitted to the HDH and that the custodian of the original source keeps it and can make it available at its own expense if desired. However, copying these databases to the HDH platform has two major advantages: on the one hand, the potential of this data is increased tenfold by offering the possibility of synchronizing it with the main database, on the other hand, access times can be reduced by delegating to the HDH Hosting and data management measures, as well as enrichment with other sources, making data available to authorized persons in controlled IT rooms, contracting, etc. Their terms are determined by agreement between the data manager and the HDH.

The HDH catalog and platform make it possible to combine the human, technological and financial investments associated with the exchange of health data, in compliance with regulations and individual rights.

The first ten bases of the catalog

For HDH, a first glimpse into the horizon of possibilities [est exposé] by bringing together fundamentals of different nature ». the A working group set up at the Ministry of Solidarity and Health has drawn up this first list of administrative, national databases, cohorts or registers and sometimes thematic stores. The aim is to address public health priorities and a private resource base:

  • The database of summaries of individual emergency visits (Oscour): national monitoring network based on the mandatory transmission of data from the summary of emergency visits;
  • The database of notifiable diseases managed by Public Health France;
  • The National Rare Diseases Data Bank (BNDMR): national health data repository that grew out of a priority project of the National Rare Diseases Plan 2 ;
  • The database on the cohort of patients infected with hepatitis B or C virus (Hépather) managed by the National Agency for Research on AIDS and Viral Hepatitis (ANRS) and the National Institute of Health and Medical Research (Inserm) is supported;
  • The database on the cohort of patients with Alzheimer’s disease (Memento) of the Bordeaux University Hospital;
  • The database on the Study of Epidemiology and Living Conditions Associated with Covid-19 (EpiCov) conducted by the National Institute for Health and Medical Research (Inserm) and the Research Department, Studies, Evaluation and Statistics (Drees);
  • The Unicancer Metastatic Breast Cancer Medico-Economic Epidemiological Strategy (Esmé CSM) database, managed by Unicancer;
  • The e-SIS (e-SIS) Breast Cancer Screening Database of the Regional Cancer Screening Coordination Center in Occitanie (CRCDC-OC);
  • The myocardial infarction registry database (e-Must registry) managed by the ARS of Île-de-France;
  • The Basis for Temporary Cohort Approval for Use in the Treatment of Small Cell Lung Cancer (ATUc CBPC) from the Roche SAS laboratory.

Six new projects approved by the CNIL

In addition, the HDH announced that six new projects have been approved by the National Commission for Computing and Liberties (Cnil). Selected through calls for tenders or in response to the health crisis, they aim to better understand the genesis of prostate cancer, predict the effectiveness of lung cancer treatments or improve treatment management of patients with or without myocardial retinal pathologies.

You will be able to use non-nominative health data generated as part of the care pathway, from research or hospital health data repositories, or even medical-administrative data from the National Health Data System (SNDS). They can also be carried out in the secure environment of the Health Data Hub technological platform. Their list can be found on the HDH website.

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