Consent to data linkages in a child cohort study: The role of survey methodology, participant characteristics and public concerns about personal data security
Jul 25, 11:30
Large-scale administrative data will become increasingly important component of longitudinal studies, as these data provide large amounts of information for little additional cost. For survey samples such as in longitudinal surveys, there is an ethical obligation in many countries to seek consent from survey participants prior to data linkage.
Obtaining high levels of consent to data linkage to child cohort studies is critical can provide information about participants after attrition (assuming that consent to link has been granted in this instance). Very few studies have been undertaken examining factors associated with consent to data linkage for child cohort studies (except see Mostafa, 2016, Mostafa & Wiggins, 2017). We propose to build on and extend evidence on factors associated with consent to data linkage using data from The Longitudinal Study of Australian Children (LSAC). LSAC has several factors that make it useful in understanding consent rates to longitudinal studies, namely:
- Multiple consents to different types of administrative data (medical records, medication records, immunisation records, educational achievement tests, school readiness measures and from income support);
- Mothers and fathers and young people age 16-17 years have been asked to consent to link their administrative data;
- Timing of consent has varied;
- Repeated requests for consent – those who did not provide consent initially, were asked in a subsequent wave for consent to data linkage.
We will develop a longitudinal model of the correlates of consent over the course of seven waves that incorporates factors 1-4 as well as:
- Demographics of parents and children;
- Prosocial behaviour;
- Psychosocial functioning and (where available) cognitive functioning;
- Prior participation rates in the survey; and
- Survey responsiveness such as the proportion of surveys completed and items missed within each survey.
A natural experiment also occurred during Wave 7 fieldwork when consent to link to medical records and income support were being sought from parents and 16-17 old children. During the middle of Wave 7 fieldwork the 2016 Census was run and for the first time was primarily collected online. Dubbed ‘Census Fail’ the Census website was taken down on Census night with the Australian Bureau of Statistics (ABS) raising concerns about data security due to hackers (ABC, 2016). We will test for differences in consent rates in the context of significant media and public concern about personal data security. While not collected under Statistics Act, it is also important to note that the ABS was also the survey agency for Wave 7.