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Article History

Received: 3 August 2020

Accepted: 19 August 2020

First Online: 9 September 2020

Compliance with ethical standards

:

: The authors have no conflicts of interest that are relevant to the contents of this manuscript.

: The ALSWH has ongoing ethical approval from the Human Research Ethics Committees (HRECs) of the Universities of Newcastle and Queensland for its survey programme (Reference H-076-0795 and 2004000224, respectively) and for health record linkage (Reference H-2011-0371 and 2012000132). In addition, access to national data collections is approved by the Australian Institute of Health and Welfare HREC (Reference EC2012/1/12).

: For the ALSWH survey data, all participants consented to joining the study and are free to withdraw or suspend their participation at any time with no need to provide a reason. For the linked data (PBS), ALSWH participants who decline health record linkage are excluded from linked data requests. Over 80 percent of all ALSWH participants have explicitly consented to record linkage. Since 2005, the responsible Human Research Ethics Committees have approved opt-out consent; in addition, a waiver applies to unconsented participants who were deceased or lost to follow up before 2005.

: The use of the ALSWH dataset is subject to strict ethical conditions due to the personal nature of the data collected. The ethics committees that oversee the ALSWH are the Australian Government Department of Health Human Research Ethics Committee and the Human Research Ethics Committees at the University of Queensland and the University of Newcastle. Ethical approval of the ALSWH specifies that de-identified data are only available to collaborating researchers where there is a formal request to make use of the material, and that each request has to be approved by the ALSWH Data Access Committee. Further details can be found at .

: Codes can be made available upon request.