Improving maternal and child health information using data linkage
As part of the EU-funded BRIDGE Health initiative, the Euro-Peristat project is finding ways to improve maternal and child health data sharing and transfer across Member States.
Perinatal care and research is multidisciplinary. It involves midwives, obstetricians, paediatricians, and other sub-specialists and data are often held in separate registers or incomplete. Data linkage is a computational technique which matches unique patient records from distinct data systems. Scientific experts have made extensive use of this tool for perinatal health research, but recent data show that record linkage use for national perinatal health monitoring is limited1.
There are successful examples of national data linkage projects, however. At the Euro-Peristat 2016 annual meeting, S. Berrut, Scientific Committee member from Switzerland presented on methods in data linkage used at the Health Division of the Swiss Federal Statistical Office, N. Lack and G. Heller, representatives from Germany gave examples of neonatal data linkages, and I. Verdenik, SC member from Slovenia, presented on linkages of birth and death data. K. Kallen also shared her experience with linkage of the Swedish National registers, and N Dattani, from the UK discussed the development of a national database of birth and maternity data for England and Wales.
The idea of linking data in the general population at the individual-level, inevitably raises privacy concerns among stakeholders. At the Euro-Peristat meeting, M. Gissler, SC member from Finland discussed implications for the transfer of individual patient data. In countries such as Finland or Sweden, linkages between 5-12 different data systems can easily be done in routine. Notably in the Nordic countries, the use of universal patient identification numbers greatly facilitates capacity to match records successfully; elsewhere in Europe, data linkage can be restricted by strict ethical frameworks and regulations.
The new EU Directive on Data protection entered into force on 5 May 2016 and the Commission’s e-HEalth Action Plan 2012-2020 is currently underway. European Member States are more than ever expected to find ways to manage big data, promote the use of electronic patient records, and find innovative solutions to facilitate cross-border health care and data transfer. The well-being of mothers and children is at the core of population health, yet the harmonization of maternal and child health routine data systems in Europe is still a real challenge that Member States need to address.
Marie Delnord, Euro-Peristat project manager
Invited speakers at the Euro-Peristat Paris 2016 Data linkage session:
- Probabilistic data linkage using G-Link,
S. Berrut, Swiss Federal Statistical Office, Section Health
- Perinatal data linkage in Lower Saxony,
N. Lack, Bavarian Institute for Quality Assurance, Germany
- Other perinatal health linkage projects in Germany,
G. Heller, AQUA-Institute, Institute for Applied Quality Improvement and Research in Health Care GmbH, Germany
- Infant deaths from day 1 to 365 as a consequence of perinatal events: an example of linkage,
I. Verdenik, University Medical Centre,Department of Obstetrics&Gynecology - Research Unit, Slovenia
- Getting data from the Swedish National Registers,
K.Kallen, The National Board of Health and Welfare, Department of Evaluation and Analysis, Epidemiology and Methodological Support Unit, Sweden
- Using data linkage to create a national database of birth and maternity data for England and Wales,
N. Dattani, School of Health Sciences, City University London, UK
- Data linkages and the possibilities to provide microdata for EU project,
M. Gissler, THL National Institute for Health and Welfare; Karolinska Insititute, Division of Family Medicine, Sweden
Data linkage presentations from the Euro-Peristat 2016 Paris meeting are available for Euro-Peristat members.
1. M. Delnord; K. Szamotulska; A.D. Hindori-Mohangoo; B. Blondel; A.J. Macfarlane; N. Dattani; C. Barona; S. Berrut; I. Zile; R. Wood; L. Sakkeus; M. Gissler; J. Zeitlin, the Euro-Peristat Scienfitic Committee. Linking databases on perinatal health: a review of the literature and current practices in Europe. The European Journal of Public Health 2016; doi: 10.1093/eurpub/ckv23. Available in Open Access