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Cohort Profile: The eLIXIR Partnership - a maternity-child data linkage for Life Course Research in South London, UK.

Research output: Contribution to journalArticle

Lauren Carson, Borscha Azmi, Amelia Jewell, Clare Taylor, Angela Flynn, Carolyn Gill, Matthew Broadbent, Louise Howard, Robert Stewart, Lucilla Poston

Original languageEnglish
JournalBMJ Open
Accepted/In press2020

King's Authors

Abstract

Purpose
Linked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health, in mothers and children. The Early Life Cross Linkage in Research (eLIXIR) Partnership was developed in 2018, generating a repository of real-time, pseudonymised, structured data derived from the electronic health record systems of two Acute and one Mental Health Care NHS Provider in South London. We present early descriptive data for the linkage database, and the robust data security and governance structures, and describe the intended expansion of the database from its original development. Additionally, we report details of the accompanying eLIXIR Research Tissue Bank of maternal and neonatal blood samples.
Participants
Descriptive data were generated from the eLIXIR database from 1 October 2018 to 30 June 2019. Over 17,000 electronic patient records were included.
Findings to date
10,207 women accessed antenatal care from the 2 NHS maternity services, with 8,405 deliveries (8,772 infants). This diverse, inner city maternity service population were born in over 170 countries with an ethnic profile of 46.1% White, 19.1% Black, 7.0% Asian, 4.1% Mixed and 4.1% other. Of the 10,207 women, 11.6% had a clinical record in mental health services with 3.0% being treated during their pregnancy. This first data extract included 947 infants treated in the neonatal intensive care unit (NICU), of whom 19.1% were postnatal transfers from external healthcare providers.
Future plans
Electronic health records provide potentially transformative information for life course research, integrating physical and mental health disorders and outcomes in routine clinical care. The eLIXIR database will grow by ~14,000 new maternity cases annually, in addition to providing child follow-up data. Additional datasets will supplement the current linkage from other local and national resources, including primary care and hospital inpatient data for mothers and their children.

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