Privacy Policy
Overview
Your personal information is protected by the Privacy Act 1988 (Cth). CSIRO handles your information in accordance with this Act, the National Health & Medical Research Council (NHMRC) National Statement on Ethical Conduct in Human Research (2023), and as otherwise required by law.
This policy describes how CSIRO collects, uses, stores, and protects personal and health information gathered through the MoTHer app. It should be read alongside CSIRO's organisation-wide Privacy Policy, which also forms part of the Terms of Use.
What Information We Collect
Through the MoTHer app, we may collect the following types of information:
- Registration details — name, email address, date of birth
- Health profile — height, weight, due date, weeks pregnant, clinic
- Health observations — blood glucose levels, blood pressure, weight, insulin doses, diet records, and other measurements entered into the app or uploaded via Bluetooth-enabled devices
- App usage data — usage logs, feedback, and survey responses
- Device information — FCM token for push notifications
How We Use Your Information
CSIRO collects your personal information through the app for the following purposes:
- Conducting scientific research as part of the MoTHer study
- Enabling your use of the app and administering your account
- Uploading health data to the secure clinical portal for review by your health care team
- Sending you survey invitations, research updates, and notifications via the app
- Responding to your enquiries
How We Share Your Information
Your personal information will be de-identified and encrypted prior to sharing between researchers at CSIRO and its research collaborators.
Your health care team at your participating site can view your clinical data through the MoTHer clinical portal for the purpose of your care.
Any datasets, reports, or publications arising from the study will not contain individual names, contact details, or address information. No individual participant will be identified in any publication or presentation.
Data Storage and Security
Your personal and health information is stored on Google Cloud Platform servers in Australia. Survey responses are collected and managed using Research Electronic Data Capture (REDCap) and stored on CSIRO servers in Australia.
All data is protected and accessible only to authorised personnel. Security measures include:
- Appropriate firewalls and network security
- Encryption of private data
- Separation of access privileges for identifying data and research data
- Role-based access control on the clinical portal
Data Retention
De-identified research data will be kept on secure servers for 5 years after the completion of the study, then deleted. Your clinical data held in hospital medical records is subject to your health service's standard retention policies.
Your Rights
- You may request access to the personal information CSIRO holds about you.
- You may request correction of any inaccurate information.
- You may withdraw from the study at any time. See Withdrawing from the Study for details.
- If you withdraw, CSIRO may still use de-identified data submitted up until the point of withdrawal.
Cookies and Analytics
This website does not use cookies or third-party analytics. The MoTHer app collects usage data as described in the Participant Information Sheet and Consent Form.
Contact Us
For questions about how your personal information is handled, or to make an access or correction request, contact: