Consent to data linkage in a large online epidemiological survey of 18–23 year old Australian women in 2012–13

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.

Using Secondary Health Data in Research

“…Informed consent results in voluntary research participation and thus it is important to seek consent to ensure patients' agreement to the use of their data in a particular research process (Windle, 2010;Brown, Brown & Korff, 2010). Obtaining consent may allow the use of information and health data for secondary purposes including undertaking further medical research, but for this to happen, the patients must be made aware of the reasons their data may be used for these purposes (Safran et al, 2007;Graves, McLaughlin, Leung & Powers, 2019). Failing to adhere to this or disclosing data to any third party without such consent might lead to confidentiality breaches and privacy issues (Ploug & Holm, 2015).…”

Smart(phone) Surveys

“…Six studies experimented with incentives (Beuthner et al, in press;Breuer et al, 2019;Graves et al, (2019); Halevi et al, 2015;Keusch et al, 2019;Weydert et al, 2019). These studies experimented with the amount, timing, or type of incentive.…”

“…Breuer et al (2019) compared the effect of an unconditional (prepaid) and conditional (postpaid) incentive of 5 euros. Graves et al (2019) compared two types of incentives: a lottery ("chance to win a gift voucher") or an item ("very fashionable designer leggings"). Women who were offered the item were more likely to consent than those who had a chance to win a gift voucher.…”

“…Five studies compared different participant groups. Two studies compared consent rates between different (naturally occurring) participant groups (Burstein et al, 2014;Grande et al, 2015), one study compared consent of mothers for themselves and for their children (Al Baghal et al, 2016), one study compared consent rates within the general population with a panel (Al Baghal et al, 2019), and one study compared consent rates of several (open) recruitment methods (Graves et al, 2019). Burstein et al (2014) compared data sharing preferences between parents of pediatric patients and adult patients.…”

“…No differences in consent rates were found between panel and nonpanel members. Graves et al (2019) conducted open recruitment using a variety of methods: Facebook (advertisements), other web activities (such as Twitter, Instagram, YouTube), referrals, traditional media and fashion promotion. Consent rates to administrative record linkage differed by method of recruitment, with women who were recruited via Facebook being less likely to provide consent, while women who were recruited via fashion promotion were more likely to consent.…”