ArticleBMC medical research methodology2014
Analysis of four studies in a comparative framework reveals: health linkage consent rates on British cohort studies higher than on UK household panel surveys.
Article in BMC medical research methodology, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed.
- Article
- Article
- Comparing primary caregivers' reported injury data with routinely recorded injury data to assess predictors of childhood injury.BMC medical research methodology · 2023Article
- Comparison of Outcomes and Survival of Two Cohorts of Patients with Simultaneous Pancreas-Kidney Transplantation: A Retrospective Cohort Study in a Latin American Hospital.BioMed research international · 2023Observational
- Adolescent mental health difficulties and educational attainment: findings from the UK household longitudinal study.BMJ open · 2021Article
- 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 · 2020Article
- Data Resource Profile: Cohort and Longitudinal Studies Enhancement Resources (CLOSER).International journal of epidemiology · 2019Article
- The contribution of area-level walkability to geographic variation in physical activity: a spatial analysis of 95,837 participants from the 45 and Up Study living in Sydney, Australia.Population health metrics · 2017Article
- The relationship between linkage refusal and selected health conditions of survey respondents.Survey practice · 2016Article
- Linking Survey and Twitter Data: Informed Consent, Disclosure, Security, and Archiving.Journal of empirical research on human research ethics : JERHREArticle
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Authors and funding
2 authors.
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Abstract
backgroundA number of cohort studies and longitudinal household panel studies in Great Britain have asked for consent to link survey data to administrative health data. We explore commonalities and differences in the process of collecting consent, achieved consent rates and biases in consent with respect to socio-demographic, socio-economic and health characteristics. We hypothesise that British cohort studies which are rooted within the health sciences achieve higher consent rates than the UK household longitudinal studies which are rooted within the social sciences. By contrast, the lack of a specific health focus in household panel studies means there may be less selectivity in consent, in particular, with respect to health characteristics.
methodsSurvey designs and protocols for collecting informed consent to health record linkage on two British cohort studies and two UK household panel studies are systematically compared. Multivariate statistical analysis is then performed on information from one cohort and two household panel studies that share a great deal of the data linkage protocol but vary according to study branding, survey design and study population.
resultsWe find that consent is higher in the British cohort studies than in the UK household panel studies, and is higher the more health-focused the study is. There are no systematic patterns of consent bias across the studies and where effects exist within a study or study type they tend to be small. Minority ethnic groups will be underrepresented in record linkage studies on the basis of all three studies.
conclusionsSystematic analysis of three studies in a comparative framework suggests that the factors associated with consent are idiosyncratic to the study. Analysis of linked health data is needed to establish whether selectivity in consent means the resulting research databases suffer from any biases that ought to be considered.
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