Health record linkage opt-outs
ALSWH participants may opt out of health record linkage at any time, and will no longer be included in lists sent to Data Linkage Units for matching. When you access linked datasets, you will receive a file including all ALSWH participants, indicating their opt-out status at that time. When you conduct your analysis it is important to consider why a woman’s data do not appear in the linked dataset, and the potential for under representation.
‘Opting out’ means expressly declining to take part in health record linkage. ALSWH has approval from responsible HRECs and data custodians* to include all Study participants in record linkage, unless they have expressly declined. This qualified consent is applicable to the 1921-26, 1946-51 and 1973-78 Cohorts (the 1989-95 Cohort expressly consented to linkage on recruitment, however, they may subsequently opt-out).
*The single exception is the Victorian Perinatal Data Collection (VPDC) where specific legislative constraints apply. Only expressly consented participants are included in VPDC data requests (70% of the 1973-78 Cohort have expressly consented).