An Open Information Model-Based Repository for Sustainable Re-Use of Heterogeneous Pandemics Research Data

Stud Health Technol Inform. 2024 Aug 22:316:1921-1925. doi: 10.3233/SHTI240808.

Abstract

The COVID-19 Research Network Lower Saxony (COFONI) is a German state network of experts in Coronavirus research and development of strategies for future pandemics. One of the pillars of the COFONI technology platform is its established research data repository (Available at https://forschungsdb.cofoni.de/), which enables provision of pseudonymised data and cross-location data retrieval for heterogeneous datasets. The platform consistently uses open standards (openEHR) and open source components (EHRbase) for its data repository, taking into account the FAIR criteria. Available data include both clinical and socio-demographic patient information. A comprehensive AQL query builder interface and an integrated research request process enable new research approaches, rapid cohort assembly and customized data export for researchers from participating institutions. Our flexible and scalable platform approach can be regarded as a blueprint. It contributes, to pandemic preparedness by providing easily accessible cross-location research data in a fully standardised and open representation.

Keywords: COVID-19; data base; data sharing; health information interoperability; open source; pandemic preparedness; pandemics.

MeSH terms

  • COVID-19* / epidemiology
  • Databases, Factual
  • Electronic Health Records
  • Germany
  • Humans
  • Information Storage and Retrieval / methods
  • Pandemics*
  • SARS-CoV-2