Cohort profile: the eLIXIR Partnership-a maternity-child data linkage for life course research in South London, UK

eLIXIR Partnership

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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 National Health Service (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 8405 deliveries (8772 infants). This diverse, inner-city maternity service population was 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, 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.
Original languageEnglish
Article numbere039583
JournalBMJ open
Volume10
Issue number10
DOIs
Publication statusPublished - 6 Oct 2020

Bibliographical note

Funding Information:
Funding This work was supported by an MRC Partnership Grant [MR/P003060/1]. LC and LH receives salary support from the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. LC was additionally supported by a Medical Research Council Mental Health Data Pathfinder Award to King’s College London. LC, AJ, MB, LH, RS are part-funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at the South London and Maudsley NHS Foundation Trust and King’s College London. AF and LP are supported by Tommy’s Charity and King’s College London. CG and LP are supported by the National Institute for Health Research (NIHR) Biomedical Research Centre at Guy’s and St. Thomas’ NHS Foundation Trust.

Keywords

  • epidemiology
  • health informatics
  • obstetrics
  • psychiatry

ASJC Scopus subject areas

  • Medicine(all)

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