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

Jennifer Zeitlin; Marianne Philibert; Francisco Estupiñán-Romero; Marzia Loghi; Luule Sakkeus; Željka Draušnik; Adela Recio Alcaide; Mélanie Durox; Jan Cap; Jelena Dimnjakovic; Janis Misins; Enrique Bernal Delgado; Martin Thissen; Mika Gissler; Euro-Peristat Research Group

doi:10.12688/openreseurope.15701.2

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

Open Res Eur. 2023 Sep 4:3:54. doi: 10.12688/openreseurope.15701.2. eCollection 2023.

Authors

Affiliations

¹ Université Paris Cité, INRAE, Centre for Research in Epidemiology and StatisticS (CRESS), Obstetrical, Perinatal and Pediatric Epidemiology Research Team, EPOPé, INSERM, Paris, 75004, France.
² Data Sciences for Health Services and Policy Research, Institute for Health Sciences in Aragon (IACS), Zaragoza, Spain.
³ Directorate for Social Statistics and Welfare, Italian Statistical Institute (ISTAT), Rome, Italy.
⁴ Estonian Institute for Population Studies, Tallin University, Tallin, Estonia.
⁵ Croatian Institute of Public Health, Zagreb, Croatia.
⁶ University of Alcala, Madrid, Spain.
⁷ National Health Information Center, Bratislava, Slovakia.
⁸ Centre for Disease Prevention and Control of Latvia, Riga, Latvia.
⁹ Department of Epidemiology and Health Monitoring, Robert Koch Institute, Berlin, Germany.
¹⁰ Department of Knowledge Brokers, THL Finnish Institute for Health and Welfare, Helsinki, Finland.
¹¹ Department of Molecular Medicine and Surgery, Karolinska Institute, Stockholm, Sweden.

^# Contributed equally.

Abstract

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.

Keywords: Birth data; caesarean delivery; federated analysis; maternal; national statistics; newborn; perinatal; population health indicators.

Grants and funding

This research was financially supported by the European Union’s Horizon 2020 research and innovation programme under the grant agreement No 101018317 (Population Health Information Research Infrastructure [PHIRI]). French participation in the data collection exercise was supported by a grant from the French National Research Agency (grant N° ANR-21-C016-004-01).