Privacy & Cyber Security – How we protect the privacy of data

We understand how important it is to ensure the privacy and security of children’s and mothers’ health information.

Despite the CDHR trial involving only a small group of users (both individuals and clinicians), we have put several measures in place that protect the privacy of the information in the system.

The trial is being run and managed by eHealth NSW, the digital health agency of NSW Health. All data captured during the trial will be stored and managed under the same strict security and privacy requirements that NSW Health applies to all of its systems.

More specifically, we have followed privacy and security design principles in accordance with the NSW Health Privacy and Security Assurance Framework (PSAF). In practice, this has meant undertaking an independent Privacy Impact Assessment (PIA) to identify areas of focus and address these in the design of the system.

We have also undertaken additional work to manage privacy concerns that cannot purely be fixed through system design by providing privacy information, materials and training to trial participants and all internal staff who are responsible for the ongoing operation of the system.

Prior to go-live, the relevant controls that were identified in the privacy impact assessment (which included technical as well as process controls), have been reviewed and checked to ensure they are in place.

Work has also been done to ensure the safety and security of sensitive data held in the Child Data Hub, and for all data transmitted to and from interfacing systems. The following four-stage process was implemented to achieve a ‘secure by-design’ approach:

This four-stage process included:

  1. An initial external security review of the system design and architecture to identify any potential gaps.
  2. A specialised security architect was employed to work closely with the delivery team to develop measures that address these gaps and include them in the system.
  3. In line with PSAF requirements, an internal eHealth NSW-led PSAF review of the system design and product was done before the CDHR went live.
  4. The CDHR was subject to an independent hands-on security testing (also known as ‘penetration testing) prior to going live.

The privacy and security assurance work has influenced how CDHR can be used in the following ways:

  • Downloading and using the CDHR app on a smartphone asks users to go through a two-step verification process (using email and SMS) to ensure the only the person registering their child can have access via the phone number they have provided in their registration form. Once the app is set up on the user’s phone, it will request a 4-digit PIN code to verify the user each time they are returning to use the app.
  • The app will enable users to see an audit log that shows any recent interactions with the child’s records, including any healthcare providers. This feature offers the main user full transparency on who has accessed their information at any time.

Once the trial has ended and a decision is made on the future of the digital health record system (e.g. transition into My Health Record), every user will be given the option to explicitly consent to or decline this transfer to My Health Record.

All health professionals are bound by duties of confidentiality and privacy laws, which are reiterated in the participation agreements each organisation involved in the trial signs. By following this procedure, we make sure any personal health information is appropriately shared for reasons related to the patient’s healthcare.   

In the future, the data would be stored in the usual way in My Health Record, with all the privacy data provisions that entails. 


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