Sources of potential bias when combining routine data linkage and a national survey of secondary school-aged children: a record linkage study

Morgan, Kelly ORCID: https://orcid.org/0000-0002-8685-1177, Page, Nicholas ORCID: https://orcid.org/0000-0002-4671-2797, Brown, Rachel ORCID: https://orcid.org/0000-0002-4475-1733, Long, Sara ORCID: https://orcid.org/0000-0003-1284-9645, Hewitt, Gillian ORCID: https://orcid.org/0000-0002-7946-4056, Del Pozo-Banos, Marcos, John, Ann, Murphy, Simon ORCID: https://orcid.org/0000-0003-3589-3681 and Moore, Graham ORCID: https://orcid.org/0000-0002-6136-3978 2020. Sources of potential bias when combining routine data linkage and a national survey of secondary school-aged children: a record linkage study. BMC Medical Research Methodology 20 , 178. 10.1186/s12874-020-01064-1

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Abstract

Background Linking survey data to administrative records requires informed participant consent. When linkage includes child data, this includes parental and child consent. Little is known of the potential impacts of introducing consent to data linkage on response rates and biases in school-based surveys. This paper assessed: i) the impact on overall parental consent rates and sample representativeness when consent for linkage was introduced and ii) the quality of identifiable data provided to facilitate linkage. Methods Including an option for data linkage was piloted in a sub-sample of schools participating in the Student Health and Wellbeing survey, a national survey of adolescents in Wales, UK. Schools agreeing to participate were randomized 2:1 to receive versus not receive the data linkage question. Survey responses from consenting students were anonymised and linked to routine datasets (e.g. general practice, inpatient, and outpatient records). Parental withdrawal rates were calculated for linkage and non-linkage samples. Multilevel logistic regression models were used to compare characteristics between: i) consenters and non-consenters; ii) successfully and unsuccessfully linked students; and iii) the linked cohort and peers within the general population, with additional comparisons of mental health diagnoses and health service contacts. Results The sub-sample comprised 64 eligible schools (out of 193), with data linkage piloted in 39. Parental consent was comparable across linkage and non-linkage schools. 48.7% (n = 9232) of students consented to data linkage. Modelling showed these students were more likely to be younger, more affluent, have higher positive mental wellbeing, and report fewer risk-related behaviours compared to non-consenters. Overall, 69.8% of consenting students were successfully linked, with higher rates of success among younger students. The linked cohort had lower rates of mental health diagnoses (5.8% vs. 8.8%) and specialist contacts (5.2% vs. 7.7%) than general population peers. Conclusions Introducing data linkage within a national survey of adolescents had no impact on study completion rates. However, students consenting to data linkage, and those successfully linked, differed from non-consenting students on several key characteristics, raising questions concerning the representativeness of linked cohorts. Further research is needed to better understand decision-making processes around providing consent to data linkage in adolescent populations.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Social Sciences (Includes Criminology and Education) Development and Evaluation of Complex Interventions for Public Health Improvement (DECIPHer)
Publisher:	BioMed Central
ISSN:	1471-2288
Funders:	Wellcome Trust
Date of First Compliant Deposit:	30 June 2020
Date of Acceptance:	24 June 2020
Last Modified:	08 Jul 2023 08:05
URI:	https://orca.cardiff.ac.uk/id/eprint/132898

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