Understanding Endometriosis and Insurance.

Researchers from NICM Health Research Institute and the School of Business at Western Sydney University are interested in finding out about the uptake of, and experiences people with endometriosis are having with life, income protection, permanent disability, trauma and private health insurance. It is uncertain how endometriosis impacts the ability of people with endometriosis to obtain, afford, manage and claim on these insurances.

This information will help us better understand the role that insurance plays in managing the risks and costs associated with endometriosis and how insurance might help patients, their families and the community better manage financial and health related quality of life issues associated with endometriosis management.

Researchers involved

Mr Andrew Proudfoot (MPhil Candidate), Dr Mike Armour and Mr Justin Sinclair (PhD Candidate) of NICM Health Research Institute and Dr Sarah Duffy of the School of Business, Western Sydney University, Australia. This project has been approved by the Western Sydney University Ethics Committee (H15099). No external funding was received for this study.

Eligibility Criteria

This survey is open to people who are current residents of Australia and New Zealand only.

To participate in this survey you need to:
- Have been told by your doctor you have endometriosis.
- Be aged 18 or older

Content of the survey

The survey will ask about your background (such as your age, which country you live in), how your endometriosis was diagnosed, lifestyle and health questions including what symptoms you have and how you manage these, the insurance you have or don't have. Questions about insurers, claiming, medicine usage may be different depending on your answers to prior questions. It might help you answer some of the questions if you have your policy cover / documents or superannuation statement available (as often life and disability insurance information is listed there) but that is not essential.

What participation involves

Participation in the study will involve completing an online survey that will take 15-30 minutes. You will be required to complete the survey in one sitting as we do not use cookies to protect your privacy.

Anonymity

The survey is anonymous and no identifying data such as name, date of birth, address, or email will be requested. We will remove any references to personal information in answers to open-ended questions that might allow someone to guess your identity. We do not collect your IP address or any location data.

Several of the following questions ask for some personal information such as your weight and height. We ask these questions because they are used for assessing insurance risk and to determine whether people with endometriosis may be underinsured or over-insured; high risk or low risk; charged more premiums or less premiums etc. All responses are anonymous, and we would appreciate if you can answer these but understand if you would prefer not to.

What will happen with the results

It is intended that the results of this study will be published in journal articles, reports, and presented at conferences, professional development sessions and other scientific meetings. Reports regarding claims, safety and health effects, using aggregate data, actuarial, advisory and/or underwriting methodologies may also be prepared for specific groups/organisations to help facilitate safe practice, public health and risk management. Raw data collected will be accessible only by members of the research team.

Voluntary participation

Your participation in this study is completely voluntary. Should you wish to withdraw at any stage before you submit your results, you are free to do so. Unfortunately, once you have submitted your results we are unable to remove them as they are anonymous and so we cannot identify which answers are yours.

How to participate

Please read the information sheet for more information (this will open in a new window).If you would like to participate, please indicate that you have read and understood this information by clicking the 'Next' button below. It is important that you complete the survey only once.

Further information: Should you require any further information, or have any concerns, please do not hesitate to contact Dr Mike Armour +61 415363201 or m.armour@westernsydney.edu.au. If you have any complaints or reservations about the ethical conduct of this research, you may contact the Ethics Committee through Research Engagement, Development and Innovation (REDI) on Tel +61 2 4736 0229 or email humanethics@westernsydney.edu.au. Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome.