What influences respondents to behave consistently when asked to consent to health record linkage on repeat occasions?

Abstract

This study constitutes the first longitudinal exploration of consent to link survey and administrative data. It examines variations in consent over time and explores the influence of the respondents' characteristics (both observed and latent) and the impact of the interviewers on consent co-operation. Respondent inclination to consent is modelled as a latent construct. Most respondents behave consistently over time. However, this consistency is not driven by a strong inclination to consent but rather by the circumstances of the respondents at the time of the interview and by the impact of the interviewers themselves. The findings also show that the change in consent behaviour over time is a clear indication that consent should be treated as a dynamic phenomenon at the individual level.

Linking Survey and Twitter Data: Informed Consent, Disclosure, Security, and Archiving

“…At the same time, there has been a proliferation of data collected on individuals with information not frequently available in surveys. In response, efforts have been made to link these new sources of data to survey data to both address nonresponse and to add to the available data for analysis (e.g., Al Baghal, 2016; Eisnecker & Kroh, 2017; Mostafa & Wiggins, 2018; Sakshaug, Hülle, Schmucker, & Liebig, 2017; Sakshaug, Couper, Ofstedal, & Weir, 2012). To link these data, survey researchers have to ask permission from respondents, both to obtain information to locate records (e.g., Twitter handles) and for ethical reasons.…”

“…Other respondent characteristics are frequently (but not always) found to be related to consent. Several studies have found females less likely to consent (Knies, Burton, & Sala, 2012; Sala et al, 2012), as well as there being a number of findings that minorities are less likely to consent to linkage (Al Baghal, 2016; Kho, Duffett, Willison, & Brouwers, 2009; Knies & Burton, 2014; Knies et al, 2012; Mostafa & Wiggins, 2018).…”

Using a Mobile App When Surveying Highly Mobile Populations: Panel Attrition, Consent, and Interviewer Effects in a Survey of Refugees

“…Regardless of interviewer characteristics associated with consent rate, the literature points to substantial interviewer variance in consent rates (Korbmacher & Schröder, 2013; Mostafa & Wiggins, 2017; Sakshaug et al, 2012). For instance, Korbmacher and Schröder (2013) observe interviewer intraclass correlation levels on the consent decision of over 40% even after controlling for respondent- and interviewer-level characteristics.…”

Nurse Effects on Non-response in Survey-Based Biomeasures

“…Further, even when cooperation is obtained, respondents may not consent to every individual biomeasure. The general issue of non-consent to health survey data collection has garnered much attention in the literature, including in this very journal (Al Baghal, 2016;Mostafa, 2016;Mostafa & Wiggins, 2018). Non-consent is particularly common for blood collection -one of the more invasive survey biomeasures (Jaszczak et al, 2009;S.L.…”