By the end of January 2019 a number of electronic health changes will be in effect for all Australians, including all PLHIV. If in doubt, Opt Out between 16 July 2018 to 31 January 2019!


LATEST NEWS: Opt out date announced, 16 July to 31 January 2019

In 2019, you will get a My Health Record (MHR) unless you opt out. If you don’t want a MHR, complete the online process by 31 January 2019

What is My Health Record?

My Health Record (MHR) is a online electronic database owned by the federal government of summary health information for all Australians, including people living with HIV (PLHIV) in the one place.

By the end of 2018 the Australian Digital Health Agency (the Agency) will create a MHR for everyone. For some PLHIV this might be useful. It will improve health outcomes and reduce waiting times for test results and inefficiency (pathology, polypharmacy etc.) It is likely to reduce the incidence of adverse medical events and ensure everyone has the information they need to treat you in a responsive and timely way.

Your MHR will be populated with Medicare (PBS and MBS) records from the previous two years as the record is set up. It can include your prescriptions, 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 referral letters to specialists) and hospitals can upload discharge summaries and follow-up care information. This is what is known as ‘primary use’ of your MHR.

‘Secondary uses’ of your My Health Record

Positive Life believes about the impacts of any ‘secondary use’ of the MHR will undermine by the primary benefits of the MHR. Positive Life has concerns about the impacts of stigma, privacy, and potential legal impacts or criminalisation of PLHIV with any ‘secondary use’ of the MHR.

Some examples of the ‘any secondary purposes’, with or without the consent of the individual record holder include: linking health data across systems and passing information to law enforcement authorities; accessing your health data in the preparation of legal proceedings before any court or tribunal; and benign or active surveillance of individuals or populations.

Risks and Impacts of your My Health Record

These impacts can pose significant risk to PLHIV such as people who are sex workers, people who use drugs (licit and illicit), women living with HIV, immigrants and refugees living with HIV. For these PLHIV, personal and sensitive health data will become available for ‘secondary uses’ at any stage.

If you share any of these concerns, Positive Life is suggesting PLHIV opt-out of MHR until your concerns are allayed. If in doubt, opt out!

Positive Life believes the principle of ‘patient data sovereignty’ is paramount.

This means, we believe that the ownership and confidentiality of your personal electronic health data must remain under your full control as a PLHIV especially given confidentiality can impact on PLHIV disproportionally across NSW. For example, if you are the only woman living with HIV from a certain postcode, accessing confidential data could unintentionally disclose her HIV status. 

pdfDownload an informative presentation from Positive Life (updated Thursday 15 November 2018)

Read an online article about ‘Opting-Out’

pdfPosLife Factsheet: PLHIV and My Health Record (MHR) (updated Thursday 15 November 2018)

Positive Life wrote a submission to the Department of Health to offer feedback about the potential risks for PLHIV associated with secondary use of the data. We advocate for five main principles to be strengthened and clarified with greater transparency in the secondary use of MHR data framework (yet to be introduced).

These are around the issues of:

  • Consent and Privacy,
  • Secondary Uses,
  • Confidentiality,
  • Commerciality and Coercion, and
  • Accountability and Oversight

Opt Out of the MHR and Timeframe

There will be an opportunity to opt out from the 16 July to 31 January 2019 if you do not want a MHR.

The diagram below indicates the sequence of events.

Subscribe to an email service on the MHR website which will notify you by email when the opt-out period begins.

This diagram indicates the sequence of events enabling opt-out to begin.

If you already have a MHR and you would like to opt-out of the program, you will be able to do this between the 16 July to 31 January 2019 or by calling the Help line on 1800 723 471, or follow these options under 'Cancel my record'.

Find out more about Opting-Out

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


Further reading

Is the My Health Record technology out of date? – 28 November 2018

Parliament passes permanent My Health Record deletion provision – 26 November 2018

My Health Record problems give government a bitter, but needed privacy pill – 19 November 2018

My Health Record opt-out extension welcomedMy Health Record opt-out extension welcomed – 16 November 2018

Hidden conflict: My Health Record boss privately giving advice to health firms – 15 November 2018

New changes to My Health Record privacy regime – 15 November 2018

My Health Record: Should you opt out? – 14 November 2018

The My Health Record opt-out deadline has been extended. Here's what you need to know – 14 November 2018

My Health Record 'overlooked' Australians without internet access, says a rural health worker – 12 November 2018

My Health Record opt-out system back online after crash – 6 November 2018

My Health Record's privacy chief quits amid claims agency 'not listening' – 9 November 2018

Unions urge members to opt out of MyHealth Record – 13 July 2018

My Health Record: the Government wants to access your data until 30 years after you die – 10 August 2018

Cyber security experts warn patients over online medical record plan for all Aussies – 12 July 2018

Doctors, Lawyers, and Privacy Experts Denounce HealthEngine Sharing Patient Health Data With Non-GPs – 25 June 2018

Data ethics is more than just what we do with data, it’s also about who’s doing it – 22 June 2018

We don’t own data like we own a car – which is why we find data harder to protect – 21 June 2018

Positive Life Media Release - My Health Record opt-out dates announced – 31 May 2018 (updated Tues 14 August 2018)

The Agency Media release - My Health Record opt out date announced – 14 May 2018

‘Damaging our trust’: why My Health Record lets down sexual and gender minorities, Star Observer – 8 May 2018

It has begun: Australians will soon have a digital health record, Edwin Kuys – 5 May 2018

New My Health Record opt out and secondary use details leak, as announcements loom, HealthcareIT – 4 May 2018

Digital Health and PLHIV = A New Frontier – 21 April 2018

Opting Out of My Health Record – April 2018

NHS Digital defies Health Committee call to stop sharing patient data with immigration enforcement – 28 Feb 2018

My Health Record: National Opt-Out – Jan 2018

Health record details exposed as 'de-identification' of data fails, Sydney Morning Herald – 18 Dec 2017

Frequently Asked Questions about My Health Record

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

Your My Health Record and Privacy – Oct 2017

NSW Health Pathology integrated in public health system – Apr 2017

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