Privacy Policy – Australian Longitudinal Study of Women’s Health

This Policy provides a summary of how personal information is collected, held and used for the purpose of conducting the Australian Longitudinal Study on Women’s Health (ALSWH). Further detail is provided in material produced for participants and researchers and is also available on this website.

ALSWH is bound by the Commonwealth Privacy Act (1988). ALSWH is managed by research teams at the University of Newcastle and the University of Queensland, who must also comply with the respective Privacy Policies of those institutions.

Information on the Privacy Policies of the University of Newcastle and the University of Queensland can be found here:

 -          University of Newcastle – Privacy Management Plan

-          University of Queensland – Privacy Management Policy

Information on the Commonwealth Privacy Act 1988 can be found on the website of the Australian Information Commissioner http://www.oaic.gov.au/

Collection

ALSWH collects personal contact details of participants as well as the information returned on project surveys. Information collected contains health information and may include sensitive information.

Copies of the main surveys distributed to participants to date can be viewed here: http://www.alswh.org.au/for-researchers/surveys

Contact information of family members or alternate contacts is also collected for the purpose of keeping in touch with the participant. This information is provided by the participants on the consent form or in the course of an online survey.

The project may also access registers such as the National Death Index and the Electoral Roll to locate participants in cases where contact with a participant is lost.

Unless a participant has explicitly informed ALSWH that they do not want us to access data relating to them from other external sources, information is also collated from State-based Admitted patient’s datasets, cancer registries and perinatal datasets, as well as the Medicare Benefits Schedule (MBS), Pharmaceutical Benefits (PBS) and Aged Care datasets (this list of datasets will expand to include others over time).

The infographic provides a summary of the linkage process (click here to view).

Storage, use, disposal and publication

Contact Details

Contact details are separated from survey and/or other information and are replaced by a project specific identifier, this is illustrated here.

Participant contact details are stored securely in electronic and hard copy at the University of Newcastle. Personal contact information is not available to researchers unless specifically approved as a substudy by all relevant ethics committees. Personal contact details are always stored separately to participants’ survey data.

Consent Forms

Hard copy consent forms are separated from surveys and stored at the University of Newcastle’s offsite secure storage facility. Forms will be stored until seven years after the completion of the project.

Medicare consent forms are maintained by the Department of Human Services in accordance with their own requirements.

All electronic copies of consent forms are stored in folders on secure servers. Access to these folders requires ID and password authentication. Only ALSWH project staff at the University of Newcastle with specific permission and who have signed confidentiality agreements are permitted access to this information. Personal details/contact details are stored separately to participants’ survey data.

Names and addresses may be used by external contractors for bulk mail-outs of information and other participant content (e.g. surveys). Any external contractors are required to comply with the project’s Privacy Policy and confidentiality requirements.

Information contained will not be disclosed to overseas recipients.

Paper Surveys

Completed surveys are checked and scanned and/or data entered. Anyone involved in this process, whether ALSWH personnel or external contractors, must comply with the project’s Privacy Policy and confidentiality requirements.

Once the scanned copies of surveys are checked, the external contractors must

destroy the hard copies of surveys in accordance with the Human Research Ethics Committee requirements. The scanned survey files are stored electronically in protected folders on secure servers only accessible to approved staff.

Information contained in these surveys will not be disclosed to overseas recipients.

Survey Data

De-identified survey and health data are securely stored electronically at the University of Newcastle and the University of Queensland (these data are stored in a separate location to participants’ personal details in Newcastle). De-identified data are archived electronically at the Australian Data Archive (ADA) at the Australian National University.

Publication

Where the results of research are published or presented to the public the information will be presented in a form that does not permit the identification of any individual participant.

Further Information

Further information is available in the Privacy Protocol for the Australian Longitudinal Study on Women’s Health (http://www.alswh.org.au/for-researchers).

Concerns or complaints

For any concerns regarding the treatment of personal information by ALSWH please contact the study Directors by calling the Administrative Officer on (02) 4042 0686 or emailing info@alshw.org.au  The Chief Investigator may refer your concern to the Privacy Officer at the relevant University as required.

This project has been approved by the University of Newcastle’s Human Research Ethics Committee, approval no’s. H-076-0795 and H-2012-0256, and the University of Queensland’s Medical Research Ethics Committee, approval no’s. 2004000224 and 2012000950. Should a participant have concerns about their rights in this research, or a complaint about the manner in which the research is conducted, it may be given to the researcher, or, if an independent person is preferred, to the Human Research Ethics Officer, Research Office, The Chancellery, The University of Newcastle, University Drive, Callaghan NSW 2308, Australia, telephone (02) 49216333, email Human-Ethics@newcastle.edu.au. The participant may also contact the University of Queensland’s Human Research Ethics Officer on (07) 3365 3924 or write to them at the University of Queensland, St Lucia, QLD, 4072.

 Interested parties may also contact the Office of the Australian Privacy Commissioner for advice at enquiries@oaic.gov.au

Updating information

Participants can update their details by:

-          Using the online ‘change of details’ form on the ALSWH website

-          Emailing info@alswh.org.au

-          Or calling 1800 068 081 (freecall)

Participants can also request a copy of the details that they previously provided by contacting the Newcastle office via email or by phoning the freecall number (both listed above).