‘EndoZone’ Endometriosis Digital Platform Privacy Statement

The Robinson Research Institute (“we”, “us”, “our”) is an institute operating within the Faculty of Health and Medical Sciences in the University of Adelaide (University). 

This statement outlines how we collect, hold and use your Personal Information, as defined in the Privacy Act 1988 (Cth) when you use the ‘EndoZone’ Endometriosis Digital Platform (Platform). The University’s Privacy Policy also governs how we handle Personal Information.

What information do we collect

We collect the following types of Personal Information:

  • your name 
  • date of birth
  • postcode
  • contact details 
  • gender
  • work status
  • education status
  • relationship status
  • cultural background/language
  • health information about your reported endometriosis symptoms
  • IP address
  • data submitted as part of surveys on the Platform

We collect the following usage data:

  • satisfaction and feedback data
  • type of user (e.g. person with symptoms, clinician, researcher, supporter)
  • analytics data (see below)

Measuring the usage of our platform

EndoZone uses Google Analytics to collect data to track how our visitors interact with the platform.  This data includes the number of visits to the Website, the time and date of visits to the platform and its pages, where the user came from, what the user did on the platform and whether the user has completed any activities such as providing feedback or completing surveys.

How we collect your Personal Information

We will collect your Personal Information:

  • when you register to use the Platform (which allows you to track your experiences, provide feedback and opt into different research studies)
  • when you input information about yourself and your health
  • when you participate in surveys
  • when you complete feedback forms
  • when you are browsing reading materials

How we use your personal information

We will use the information identified under the heading ‘what information we collect’ above for the following:

  • personal details when you register to help set up an account in the Platform to assess user characteristics 
  • email address may be used to invite you to participate in research studies
  • health, endometriosis symptoms and data related to your experiences with endometriosis allow us to provide tailored recommendations to assist you to live well with endometriosis. This information is also collected for research purposes to evaluate the experiences of the endometriosis community and the effectiveness of different strategies to assist with symptom management.  
  • usage, analytics and feedback data are collected for quality improvement purposes and to evaluate the use of the platform.

How we store and manage your Personal Information

All Personal Information is stored on trusted third-party servers (AWS) located in Australia.

We will take reasonable steps to:

  • protect your Personal Information securely and to protect it from unauthorised access, misuse, interference, modification, disclosure or loss;
  • ensure the Personal Information collected is accurate, up-to-date and complete;
  • destroy, delete or de-identify personal information no longer needed or required to be retained by any applicable law, regulation or code applicable to the University.

How we use your information

The data collected by the platform may be exported and anonymised for research purposes. We may use your email address to invite you to participate in research projects. All identifying information including names, email addresses, any address information or other identifiers will be either be removed or obfuscated following download to ensure anonymity for research purposes.  Data will only be provided for research purposes when the research institution complies with relevant data protection requirements and when sufficient ethics approvals have been obtained. 

How we disclose your personal information

Your Personal Information may be disclosed to third-party IT service providers and third-party research partners. Your personal information will only be disclosed to and accessed by such third parties to the extent necessary for them to provide their services or conduct the research activity. We may also disclose your Personal Information if required by applicable law.

Data breaches

If we become aware of any actual or suspected breach of your Personal Information we will follow the University’s Data Breach Response Plan referred to in the University’s Privacy Policy.

How to contact us about your personal information

You may request access to the Personal Information we hold about you. We may need to verify your identity before we allow you to access your Personal Information and may refuse access for a legitimate reason. 

If you believe the Personal Information we hold about you is inaccurate, incomplete or out of date, please contact us at the details shown below. 

You may make a request about your Personal Information, or make a complaint if you believe your Personal Information has not been handled in accordance with this statement, by contacting the research team at endo@adelaide.edu.au.