Parents and young daughter on a stroll

Data Linkage

 The eLIXIR Cohort Programme will link maternal and child routine physical and mental health data with local and nationally available databases. 

Data linkage is undertaken by partners at the Clinical Data Linkage Service (CDLS) (South London and Maudsley NHS Trust), and colleagues at the Institute of Psychiatry, Psychology and Neuroscience (IoPPN-King’s College London).

Overview

The Clinical Data Linkage Service (CDLS) at SLaM hosts both source data and the master patient index on a secure server within the NHS firewall, and provides a data extraction service that meets security requirements, creating bespoke datasets for approved research use. These datasets are managed by the approved research team and are hosted at all times on a dedicated drive within the NHS firewall for analysis only in this domain. The CDLS and SLaM CRIS teams support approvals processes to allow external researcher access, in compliance with required data security and information governance standards.

The master index includes numeric links to maternity and neonatal patient data (GSTT and KCH NHS Trusts) from the clinical platform in routine use (BadgerNet), and mental health data from the SLaM CRIS platform. BadgerNet provides maternal/infant personal data, demographics, clinical history, clinic data (maternity only) and HES data. SLaM data, including diagnoses, medication and services provided, are represented on CRIS, including Improving Access to Psychological Therapies data. All records are deidentified, including masking of identifying information in open-text fields and use of pseudonymised identifiers. The data refresh process occurs every 4-6 months, and each data update includes all retrospective data since conception of the cohort (October 2018), thus building a dynamic cohort.

Governance and Permissions

Technical and procedural elements are in place to safeguard patients’ legal and ethical rights, and procedures for recruitment and data linkage, as previously reported (Carson et al, BMJ Open 2021). Ethics approvals were obtained from Oxford Central REC (18/SC/0086) (eLIXIR data linkage) and Cambridge East REC (18/EE/0120) (eLIXIR bioresource).

Adherence to the Routine NHS data and Information Governance Framework: Data accrual is carried out under the auspices of Section 251 (s251) of the NHS Act 2006. Opt-out information and details of the eLIXIR project are made available to all women entering maternity and neonatal services (and through on-line antenatal booking), and women have the option of opting out of the programme at any time. The use of this legal framework for eLIXIR was deployed following standard review by the Health Research Authority (HRA) Confidentiality Advisory Group (CAG) (HRA CAG Ref: 18/CAG/0040).

eLIXIR Security model– see for further technical details of our full data linake security model.

This programme is exploring the early origins of physical and mental health disorders through a ‘life-course’ study of mothers and their children