Abstract
BackgroundConsent to link survey data with health-related administrative datasets is increasingly being sought but little is known about the influence of recruiting via online technologies on participants’ consents. The goal of this paper is to examine what factors (sociodemographic, recruitment, incentives, data linkage information, health) are associated with opt-in consent to link online survey data to administrative datasets (referred to as consent to data linkage).MethodsThe Australian Longitudinal Study on Women’s Health is a prospective study of factors affecting the health and well-being of women. We report on factors associated with opt-in consent to data linkage at the end of an online survey of a new cohort of 18–23 year old Australian women recruited in 2012–13. Classification and Regression Tree analysis with decision trees was used to predict consent.ResultsIn this study 69% consented to data linkage. The provision of residential address by the individual, or not (as a measure of attitudes towards privacy), was the most important factor in classifying the data into similar groups of consenters (76% consenters versus 47% respectively). Thereafter, for those who did not provide their residential address, the incentives and data linkage information that was offered was the next most important factor, with incentive 2: limited-edition designer leggings and additional information about confidentiality showing increases in consent rates over Incentive 1: AUD50 gift voucher: 60% versus 37%.ConclusionsIn young Australian women, attitudes towards privacy was strongly associated with consenting to data linkage. Providing additional details about data confidentiality was successful in increasing consent and so was cohort appropriate incentives. Ensuring that prospective participants understand the consent and privacy protocols in place to protect their confidential information builds confidence in consenting to data linkage.
Highlights
Consent to link survey data with health-related administrative datasets is increasingly being sought but little is known about the influence of recruiting via online technologies on participants’ consents
Women who did not provide their area of residence were less likely to consent to data linkage
Increasingly, online surveys with data linked to administrative datasets, such as hospital and mortality records, are being utilised for large-scale epidemiological studies because of their cost-effectiveness and acceptability [34]
Summary
Consent to link survey data with health-related administrative datasets is increasingly being sought but little is known about the influence of recruiting via online technologies on participants’ consents. The goal of this paper is to examine what factors (sociodemographic, recruitment, incentives, data linkage information, health) are associated with opt-in consent to link online survey data to administrative datasets (referred to as consent to data linkage). Large epidemiological surveys are increasingly seeking consent to link or match survey data with administrative datasets [1]. Linking to these datasets can substantially enhance the utility of the collected data and allow researchers to answer important questions which are not readily answerable through the use of survey data alone [2]. Still there was considerable heterogeneity among the studies reviewed and variations among the methods by which consent was obtained, i.e. ranging from a face-to-face interview to a mailed letter.
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