The practicalities of adapting UK maternity clinical information systems for observational research: Experiences of the POOL study

Lugg-Widger, Fiona ORCID: https://orcid.org/0000-0003-0029-9703, Barlow, Christian ORCID: https://orcid.org/0000-0001-5759-0310, Cannings-John, Rebecca ORCID: https://orcid.org/0000-0001-5235-6517, Gale, Chris, Houlding, Nicola, Milton, Rebecca, Plachcinski, Rachel, Robling, Michael ORCID: https://orcid.org/0000-0002-1004-036X and Sanders, Julia ORCID: https://orcid.org/0000-0001-5712-9989 2023. The practicalities of adapting UK maternity clinical information systems for observational research: Experiences of the POOL study. International Journal of Population Data Science 8 (1) , 18. 10.23889/ijpds.v8i1.2072.

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Abstract

Background Using routinely collected clinical data for observational research is an increasingly important method for data collection, especially when rare outcomes are being explored. The POOL study was commissioned to evaluate the safety of waterbirth in the UK using routine maternity and neonatal clinical data. This paper describes the design, rationale, set-up and pilot for this data linkage study using bespoke methods. Methods Clinical maternity information systems hold many data items of value for research purposes, but often lack specific data items required for individual studies. This study used the novel method of amending an existing clinical maternity database for the purpose of collecting additional research data fields. In combination with the extraction of existing data fields, this maximised the potential use of existing routinely collected clinical data for research purposes, whilst reducing NHS staff data collection burden. Wellbeing Software® provider of the Euroking® Maternity Information System, added new study specific data fields to their information system, extracted data from participating NHS sites and transferred data for matching with the National Neonatal Research Database to ascertain outcomes for babies admitted to neonatal units. Study set-up processes were put in place for all sites. The data extraction, linkage and cleaning processes were piloted with one pre-selected NHS site. Results Twenty-six NHS sites were set-up over 27 months (January 2019 - April 2021). Twenty-four thousand maternity records were extracted from the one NHS site, pertaining to the period January 2015 to March 2019. Data field completeness for maternal and neonatal primary outcomes were mostly acceptable. Neonatal identifiers flowed to the National Neonatal Research Database for successful matching and linkage between maternity and neonatal unit records. Discussion Piloting the data extraction and linkage highlighted the need for additional governance arrangements, training at NHS sites and new processes for the study team to ensure data quality and confidentiality are upheld during the study. Amending existing NHS electronic information systems and accessing clinical data at scale, is possible, but continues to be a time consuming and a technically challenging exercise.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Centre for Trials Research (CNTRR) Development and Evaluation of Complex Interventions for Public Health Improvement (DECIPHer) Healthcare Sciences Social Sciences (Includes Criminology and Education)
Publisher:	Swansea University
ISSN:	2399-4908
Date of First Compliant Deposit:	27 June 2023
Date of Acceptance:	16 May 2023
Last Modified:	09 Apr 2024 16:27
URI:	https://orca.cardiff.ac.uk/id/eprint/160620

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