Record linkage to enhance consented cohort and routinely collected health data from a UK birth cohort.

Lucy Griffiths,Efrosini Setakis,Emla Fitzsimons,Suzanne Walton,Ashley Akbari,Amrita Bandyopadhyay,Helen Bedford,Sinead Brophy,Karen Susan Tingay,Ronan Lyons,Carol Dezateux,Mario Cortina-Borja

doi:10.23889/ijpds.v4i1.579

Abstract

BackgroundIn longitudinal health research, combining the richness of cohort data to the extensiveness of routine data opens up new possibilities, providing information not available from one data source alone. In this study, we set out to extend information from a longitudinal birth cohort study by linking to the cohort child’s routine primary and secondary health care data. The resulting linked datasets will be used to examine health outcomes and patterns of health service utilisation for a set of common childhood health problems. We describe the experiences and challenges of acquiring and linking electronic health records for participants in a national longitudinal study, the UK Millennium Cohort Study (MCS).MethodWritten parental consent to link routine health data to survey responses of the MCS cohort member, mother and her partner was obtained for 90.7% of respondents when interviews took place at age seven years in the MCS. Probabilistic and deterministic linkage was used to link MCS cohort members to multiple routinely-collected health data sources in Wales and Scotland.ResultsOverall linkage rates for the consented population using country-specific health service data sources were 97.6% for Scotland and 99.9% for Wales. Linkage rates between different health data sources ranged from 65.3% to 99.6%. Issues relating to acquisition and linkage of data sources are discussed.ConclusionsLinking longitudinal cohort participants with routine data sources is becoming increasingly popular in population data research. Our results suggest that this is a valid method to enhance information held in both sources of data.

Highlights

BackgroundLinking detailed routine administrative data to detailed survey responses can add value to population health research
The study consisted of Millennium Cohort Study participants who were interviewed in Wales or Scotland at age seven, and whose legal parent/carer had given consent to link the cohort member’s health records at the age seven interview [3]
The sample was originally drawn from Child Benefit records, as these were claimed by almost all families in the United Kingdom (UK) at the time

Summary

Introduction

BackgroundLinking detailed routine administrative data to detailed survey responses can add value to population health research. Linking routine data with cohort studies improves the overall detail and knowledge we have about a participant, and provides the ability to validate each data source [2], which strengthens research and reduces the knowledge gap. Such linkage combines the volume of activity data from routine data sources with rich data in cohort studies on personal circumstances, behaviours and attitudes not captured in administrative or clinical data, enhancing the value of both sources for public health research. In longitudinal health research, combining the richness of cohort data to the extensiveness of routine data opens up new possibilities, providing information not available from one data source alone. We describe the experiences and challenges of acquiring and linking electronic health records for participants in a national longitudinal study, the UK Millennium Cohort Study (MCS)

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Conclusion