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. 2019 Apr 2;4(1):579.
doi: 10.23889/ijpds.v4i1.579.

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

Karen Susan Tingay  1 , Amrita Bandyopadhyay  2 , Lucy Griffiths  2 , Ashley Akbari  3 , Sinead Brophy  2 , Helen Bedford  4 , Mario Cortina-Borja  4 , Efrosini Setakis  5 , Suzann Walton  6 , Emla Fitzsimons  7 , Carol Dezateux  8   9 , Ronan A Lyons  3
Affiliations

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

Karen Susan Tingay et al. Int J Popul Data Sci. .

Abstract

Background: 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. 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).

Method: Written 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.

Results: Overall 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.

Conclusions: Linking 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.

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Conflict of interest statement

Statement on conflicts of interest: None to declare.

Figures

Figure 1: Information required by health service Trusted Third Parties to create linkage identifiers for this project
Figure 1: Information required by health service Trusted Third Parties to create linkage identifiers for this project
Observation: MCS Identifier is the anonymized field assigned by the Millennium Cohort Study team. ALF is the Welsh Anonymized Linkage Field assigned by the Welsh Trusted Third Party
Figure 2: Data governance and flow diagram.
Figure 2: Data governance and flow diagram.
Observation: CLS = the Centre for Longitudinal Studies; SAIL IGRP = the ethics board for projects wishing to use the SAIL databank and Welsh linked data; eDRIS and PPBP = ethics boards for projects wishing to use Scottish routine health data
Figure 3: Flow chart showing inclusion criteria and numbers for the final linked population
Figure 3: Flow chart showing inclusion criteria and numbers for the final linked population
Observation: MCS = Millennium Cohort Study
See this image and copyright information in PMC

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References

    1. Public Health Research Data Forum. Enabling Data Linkage to Maximise the Value of Public Health Research Data: full report. UK: Wellcome Trust; 2015.
    1. Mountain, J.A., Nyaradi, A., Oddy, W.H., Glauert, R.A., de Klerk, N.H., et al.. Data linkage in an established longitudinal cohort: the Western Australian Pregnancy Cohort (Raine) Study. Public Health Research & Practice, 2016:26:e2631636, 10.17061/phrp2631636 - DOI - PubMed
    1. Shepherd, P. Consent to linkage to child health data in the Millennium Cohort Study. London: Centre for Longitudinal Studies; 2013.
    1. Al Baghal, T. Obtaining data linkage consent for children: factors influencing outcomes and potential biases. UK: University of Essex; 2016. Understanding Society Working Paper Series. 2016-03. 10.1080/13645579.2015.1064635 - DOI
    1. Tingay, K.S., Heaven, M. and Lowe, S. Review into the capability of the ‘ Secure Anonymised Information Linkage ’ ( SAIL ) Databank to provide data for the Social Services National Outcomes Framework for people who need care and support and carers who need support. Cardiff: : Welsh Government, 2015. 71/2015.

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