The Government is consulting about how data in the My Health Record system may be used in future. This is your chance to have your say about your privacy and the electronic health records integration.

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In May, Positive Life NSW shared information about the electronic integration with NSW Health Pathology reports and the Australian My Health Record. This integration improved access to pathology results for people living with HIV (PLHIV) and our clinicians as well as avoiding doubling up and unnecessary testing. By 2018 every Australian, including PLHIV, will have a My Health Record created as a part of the national Australian digital health record system.

This My Health Record is a centralised way all your health information can be accessed by your healthcare providers like doctors, specialists and hospital staff. It will be created unless you choose to opt out of the My Health Record system. If you do not opt-out, your consent is implied.

The opt-out process and the timeframes for the National rollout of the My Health Record system are still to be announced and Positive Life NSW will provide information over the coming months as details become available.

The My Health Record currently has a ‘primary use’ and the Australian Government is now exploring the ‘secondary use’ of your health information.

The primary use of the My Health record is to provide access to create an electronic medical record so that healthcare providers can better coordinate your care, even when you can’t speak, such as in a medical emergency. Your My Health Record can include prescription data (what medications you take), your medical conditions, allergies, test results (like pathology results, blood tests or x-ray reports), information from MBS or PBS items and Medicare (like the last time you went to see your doctor). It can also hold documents uploaded by your GP (like letters to specialists) and hospitals can upload discharge summaries and follow-up care information.

Examples of ‘secondary uses’ of My Health Record include the offering of new drugs to the public for diseases like diabetes or cancer, as a targeted link to people who want to be part of clinical trials, and also to assist research into subsequent hospitalisations, diseases and death. The commercialisation of this health data is also on the table to allow, for example, pharmaceutical companies who intend to develop medications or tech companies who create health apps, access to this health data.

The Government is consulting with the public including PLHIV about your views, opinions and concerns about how data in the My Health Record system may be used in future. This is your chance to have your say about your privacy and the electronic health records integration.

There are a number of ways you can have your say:

  • click here to do the online survey by 17 November 2017;
  • provide a written submission by 17 November 2017 posted to HealthConsult, 3/86 Liverpool Street, Sydney NSW 2000 or email it to This email address is being protected from spambots. You need JavaScript enabled to view it.;
  • register for the Consumers Health Forum national webinar, to be held at 12:30pm AEST on 16 November 2017 (go to https://chf.org.au/events/webinar-secondary-use-my-health-record-data);
  • find a workshop the city or town closest to you; or if you cannot do this
  • contact HealthConsult directly to provide your views.

Positive Life NSW will be tendering a submission to the Australian Government about the secondary use of My Health Record data, so if you’d like to provide written advice into this consultation moment please contact Positive Life Research and Peer Support Officer, Dejay Toborek on email This email address is being protected from spambots. You need JavaScript enabled to view it., by 10am Thursday 2 November 2017.

If you already have a My Health Record and you would now like to opt-out of the program, you can cancel by calling the Help line on 1800 723 471, or follow these options under ‘Can I cancel My Heath Record registration’.

If you need further information or support about My Health Record and what this means for you or have more questions about the consultation process re the secondary use of My Health Record data please contact Positive Life on (02) 9206-2177.

Further reading

Frequently Asked Questions about My Health Record

NSW Health Pathology integrated in public health system – April 2017

pdfFramework for Secondary Use of My Health Record Data Submission to NSW Dept of Health – November 2017

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