Research Repository

Analysis of four studies in a comparative framework reveals: health linkage consent rates on British cohort studies higher than on UK household panel surveys

Knies, Gundi and Burton, Jonathan (2014) 'Analysis of four studies in a comparative framework reveals: health linkage consent rates on British cohort studies higher than on UK household panel surveys.' BMC Medical Research Methodology, 14 (1). 125-. ISSN 1471-2288

art%3A10.1186%2F1471-2288-14-125.pdf - Published Version
Available under License Creative Commons Attribution.

Download (313kB) | Preview


Background: A 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. Methods: Survey 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. Results: We 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. Conclusions: Systematic 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.

Item Type: Article
Uncontrolled Keywords: Humans; Data Collection; Health Surveys; Medical Records Systems, Computerized; Cohort Studies; Longitudinal Studies; Social Sciences; Research Design; Informed Consent; Consent Forms; Adolescent; Adult; Middle Aged; Female; Male; Young Adult; United Kingdom; Bias
Subjects: H Social Sciences > H Social Sciences (General)
H Social Sciences > HA Statistics
Divisions: Faculty of Social Sciences
Faculty of Social Sciences > Institute for Social and Economic Research
SWORD Depositor: Elements
Depositing User: Elements
Date Deposited: 07 Jan 2015 15:21
Last Modified: 15 Jan 2022 00:26

Actions (login required)

View Item View Item