By the end of 2018 as number of electronic health changes will be in effect for all Australians, including all PLHIV.

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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 with HIV from a certain postcode, accessing confidential data could unintentionally disclose her HIV status.  By the end of 2018 as number of electronic health changes will be in effect for all Australians, including all PLHIV.

Digital Health and PLHIV = A New Frontier

Positive Life members and people living with HIV are invited to a discussion on Saturday 21 April for an important discussion about our digital health and privacyas people living with HIV (PLHIV).

Date: Saturday 21 April 2018
Time: 9.30am - 1pm (followed by lunch)
Place: Adina Hotel, 2 Lee St, Haymarket NSW

More information

National electronic health record system: My Health Record

The Australian Digital Health Agency (the Agency) will expand the system with a My Health Record for every Australian, including all PLHIV by December 2018.

‘My Health Record’ expansion and Rollout

Positive Life recently let you know about the integration and privacy concerns of the My Health Record. This record can be accessed by your healthcare providers including doctors, specialists and hospital staff. 

The primary use of the My Health record is to ensure improved access to healthcare records so your 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.

While the primary use and functions of the My Health Record can benefit the healthcare of PLHIV, 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.

Secondary Uses of the My Health record

We believe the benefits of the My Health Record system will be undermined by the use of personal health data for any secondary purposes. Examples of ‘secondary uses’ of My Health Record include the sharing of data to assist research into subsequent hospitalisations, diseases and death or offering of new drugs to the public for diseases like diabetes or cancer. However, the reality is the current legislation allows the operators to share the data “for any purpose”, with or without the consent of the individual record holder.

In our submission, which you can download and read here, we advocate for five main principles to be strengthened and clarified with greater transparency in the secondary use of My Health Record data framework (yet to be introduced).

These were around the issues of:

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

Opt Out of the My Health Record

There will be an opportunity to opt out if your do not want a record in mid-2018.

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

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

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

Frequently Asked Questions about My Health Record

Submission on the Secondary use of My Health Record Data – November 2017

Your My Health Record and Privacy – October 2017

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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