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Article Dans Une Revue Open Research Europe Année : 2023

Developing and testing a protocol using a common data model for federated collection and analysis of national perinatal health indicators in Europe

Luule Sakkeus
  • Fonction : Auteur

Résumé

Context: International comparisons of the health of mothers and babies provide essential benchmarks for guiding health practice and policy, but statistics are not routinely compiled in a comparable way. These data are especially critical during health emergencies, such as the coronavirus disease (COVID-19) pandemic. The Population Health Information Research Infrastructure (PHIRI) project aimed to promote the exchange of population data in Europe and included a Use Case on perinatal health. Objective : To develop and test a protocol for federated analysis of population birth data in Europe. Methods: The Euro-Peristat network with participants from 31 countries developed a Common Data Model (CDM) and R scripts to exchange and analyse aggregated data on perinatal indicators. Building on recommended Euro-Peristat indicators, complemented by a three-round consensus process, the network specified variables for a CDM and common outputs. The protocol was tested using routine birth data for 2015 to 2020; a survey was conducted assessing data provider experiences and opinions. Results: The CDM included 17 core data items for the testing phase and 18 for a future expanded phase. 28 countries and the four UK nations created individual person-level databases and ran R scripts to produce anonymous aggregate tables. Seven had all core items, 17 had 13-16, while eight had ≤12. Limitations were not having all items in the same database, required for this protocol. Infant death and mode of birth were most frequently missing. Countries took from under a day to several weeks to set up the CDM, after which the protocol was easy and quick to use. Conclusion: This open-source protocol enables rapid production and analysis of perinatal indicators and constitutes a roadmap for a sustainable European information system. It also provides minimum standards for improving national data systems and can be used in other countries to facilitate comparison of perinatal indicators.
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Dates et versions

hal-04145359 , version 1 (29-02-2024)

Identifiants

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Jennifer Zeitlin, Marianne Philibert, Francisco Estupiñán-Romero, Marzia Loghi, Luule Sakkeus, et al.. Developing and testing a protocol using a common data model for federated collection and analysis of national perinatal health indicators in Europe. Open Research Europe, 2023, 3, pp.54. ⟨10.12688/openreseurope.15701.1⟩. ⟨hal-04145359⟩
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