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

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.

Figure 1.. Federated architecture connecting data hubs with the central hub.

Numbers in the figure describe the following steps: (1)    Specifications for the data model and R scripts sent to the data hub (2)    Data hub creates CDM according to specifications and runs the R scripts on its own system (3)    Anonymised data tables are sent back to the central hub for analysis (4)    The central hub compiles and analyses these data NOTE: Annotated figure from Gonzalez-Garcia J, et al. Archives of public health. Dec 9 2021;79(1):221, reprinted with permission.

Figure 2.. Availability of data for the core common data model by country.