Women's Health Australia | Australian Longitudinal Study on Women's Health



Information Statement

You are invited to participate in the Women’s Health Australia project (also known as the Australian Longitudinal Study on Women’s Health), which is conducted by researchers from the University of Queensland and University of Newcastle, and funded by the Australian Government Department of Health and Aged Care.

Why is the research being done?

Women’s Health Australia began in 1996 and is the longest running study of women’s health in Australia. There are over 57,000 women from across the country involved in Women’s Health Australia (WHA). We collect information about women’s health and wellbeing via surveys and health service records, to provide findings to the Department of Health and Aged Care. This helps to develop women’s health policies and services. The project is longitudinal – this means the study is ongoing and we follow the health of the same people over time.

Who can join the study?

We are now recruiting females born between 1989 and 1995, and those born between 1973 and 1978 to join the project! As we know many women have migrated to Australia from North-East, South-East, and Southern Asia since we first started the Study in 1996, we are especially looking for women from these areas to join WHA. It’s important to us that women from all backgrounds are given a voice in national policies that impact their health and wellbeing.

What choice do I have? Your participation is voluntary

Your participation in this study is completely voluntary and there will be no cost to you. If you do not want to take part in this study, you do not have to. You should feel under no obligation to participate in this study. Choosing not to take part in this study will not affect your current or future medical care in any way.

What would I be asked to do?

If you agree to participate, the first thing you will need to do is go to the link https://redcap.link/WHA-MiniSurvey to complete questions in a short online survey. You will be asked to provide your name and email address, and complete a few questions to make sure you’re eligible to take part in the study (date of birth, your sex). You will then be asked to complete survey questions about your health and wellbeing. The survey will take two minutes to complete. You will also be asked to provide your full name and contact details for the purpose of future correspondence. If you wish to view the survey, a pdf copy is available. We will send you another survey in approximately 2 days. After this, surveys are conducted approximately every three years. We will email you with a link to complete future surveys. For more information, see our FAQs

What if I take part in the study and change my mind later? Your withdrawal from the study

You are under no obligation to continue taking part in the project. You may change your mind about participating in Women’s Health Australia at any time. People withdraw from studies for various reasons and you do not need to provide a reason. You can cease participating in future surveys and/or withdraw your data from Women’s Health Australia at any time by contacting the project team via email (alswh@newcastle.edu.au) or call 1800 068 081 (freecall).

Please note that data about you that has already been analysed and/or included in a publication by the study will not be able to be destroyed. It is not possible to remove your data from past datasets, analyses, and publications. In such circumstances, your information will continue to form part of the project study records and results.

How will my data be protected? Storage, retention and destruction of your information

All personal and survey information collected remains confidential in accordance with the National Health and Medical Research Council ethical guidelines and the Australian 1988 Privacy Act. Your personal information will be securely stored separately from your survey answers on servers, or hosted through cloud computing providers, physically located within Australian borders. These locations will be isolated from the internet by firewalls.

Access to any identifiable data (such as names and contact details) will be restricted to members of the research team and those outlined in this information statement, unless you have consented otherwise; or disclosure is required by law in order for us to comply with our regulatory obligations. Furthermore, access to identifiable data requires user authentication for logging into the databases with a username/password combination. All database edits and data entries completed by each user are logged in the database’s audit trail. Researchers conducting analyses do not have access to personal information.

The survey will be completed online through REDCap (Research Electronic Data Capture), a secure web-based database system. REDCap is a purpose-built software application for the conduct and management of medical research surveys and case report forms for clinical trials. The REDCap application is hosted within Australian borders on Hunter Medical Research Institute secure servers, which are both physically and virtually secured. User authentication is required for logging into REDCap. All database edits and data entries completed by each user (including REDCap Administrators) are logged in the project’s audit trail.

The de-identified survey data captured from the online survey will be stored in the research database, separate from participant contact information. For extra privacy protection, different ID numbers will be assigned to these two databases, with the key between the two sets of IDs limited to a small number of staff. Copies of de-identified survey datasets are also archived electronically at the Australian Data Archive (a national repository for the curation of research data assets).

Due to the ongoing nature of the study, the data will be securely retained for at least five years after the study finishes, and stored in accordance with the University of Newcastle’s Research Data and Materials Management Guideline (https://policies.newcastle.edu.au/document/view-current.php?id=72) or any successor Guideline, The University of Queensland Policy and Procedures (including: 1.60.02 Privacy Management, 4.20.06 Research Data Management, and 6.40.01 Information Management), and applicable University of Newcastle policy provisions (as amended from time to time). After the closure of the study and the mandatory retention period, all personally identifying information (such as names, dates of birth and contact details) will be securely destroyed. De-identified survey data will continue to be maintained in the Australian Data Archive.

What are the risks and benefits of participating?

Eligible participants will receive a $5 voucher for completing the 2 minute online survey. We cannot promise you any direct benefit from participating in this research, but we expect that the data from this study will inform health policy in the future that will benefit women living in Australia.

Should you find any of the questions upsetting, you can skip them or stop the survey at any time. You can contact the following support services should you wish to seek support regarding any of the issues raised within the survey:

  • Lifeline provides 24-hour crisis support by calling 13 11 14. Lifeline online chat is available from 7pm to midnight AEST through the following website: https://www.lifeline.org.au/crisis-chat/
  • Beyond Blue provides mental health support through calling 1300 224 636. They also offer an online chat on the following website: https://online.beyondblue.org.au/#/chat/start
  • 1800RESPECT provides 24-hour confidential information, counselling and support services for people impacted by sexual assault, domestic or family violence and abuse, by calling 1800 737 732. An online chat can be accessed at any time through the following website: https://www.1800respect.org.au

How will the information collected be used?

If you choose to participate, you will be joining an existing cohort of participants providing data as part of Women’s Health Australia.

It is expected that the de-identified study results will be used in journal articles, reports, conference presentations and seminars. All published data will be de-identified, and there will be no possibility of re-identification of your data within publications. Non-identifiable data may be made available for future research. All researchers who wish to use Women’s Health Australia data will need to apply to the Australian Longitudinal Study on Women’s Health (ALSWH) Data Access Committee, adhere to all ethical requirements and guidelines, and agree to the ALSWH terms and conditions for use of the data as outlined here: https://alswh.org.au/for-data-users/applying-for-data

We will keep you informed of study results via an annual newsletter. You will also be able to view updates on the project website: www.alswh.org.au

What do I need to do to participate?

Please read this information statement and the accompanying consent preview documents before you commence the survey. Commencement of the survey will be taken as implied consent to participate. If there is anything you do not understand, or you have questions, please contact the researchers (see details below). At the beginning of the survey, you will be required to provide your preferred name, email address, date of birth, sex, and whether or not you have a Medicare card. After the survey health questions, you will be asked to provide your full name, and contact details. If you would like to participate, please click on the survey link below to commence the short online survey.

Where can I get more information?

If you would like further information, please see our FAQs or contact the Women’s Health Australia team via email (alswh@newcastle.edu.au) or phone (1800 068 081).

Thank you for considering this invitation.

Professor Gita Mishra

A/Professor Leigh Tooth

Professor Deborah Loxton 

The Research Team

  • Prof Gita Mishra
    University of Queensland
  •  Prof Deborah Loxton
    University of Newcastle
  • A/Prof Leigh Tooth
    University of Queensland

Complaints about this research

This project has been approved by the University of Newcastle (Approval No. H-076-0795 and H-2012-0256) and University of Queensland Human Research Ethics Committees (Approval No. 2004000224 and 2012000950).

Should you have concerns about your rights as a participant in this research, or you have a complaint about the manner in which the research is conducted, it may be given to Co-Investigator Prof Loxton: (02) 4042 0690 or deborah.loxton@newcastle.edu.au, or, if an independent person is preferred, to the Ethics Officer, Research and Innovation Services, The University of Newcastle, University Drive, Callaghan NSW 2308, Australia, telephone (02) 4921 6333 or email Human-Ethics@newcastle.edu.au.

We are grateful to the Australian Government Department of Health and Aged Care for funding.

The Australian Longitudinal Study on Women’s Health is funded by the Australian Government Department of Health. It is a collaborative project conducted by staff and investigators at the University of Newcastle and the University of Queensland.

Logos of the University of Newcastle and the University of Queensland