“The current model for PLHIV is not enough,” said Craig Cooper CEO of Positive Life. “The potential risk of criminalisation for certain PLHIV is high. If you have any doubt, time to opt out.” #MHROptOut


 My Health Record opt-out dates announced

 31 May 2018

The Australian Digital Health Agency (the Agency) has announced the My Health Record (MHR) three month opt-out period from the 16 July 2018 to 15 October 2018. [NB: this Opt-Out period has been extended to 31 January 2019]

This national electronic record system will centralise health information for all Australians including people living with HIV (PLHIV) with a range of personal health information.  This includes your prescriptions, medical conditions, allergies, blood test results, x-ray reports, information from MBS or PBS items and Medicare. It can also hold documents uploaded by your healthcare providers like specialists’ referral letters and hospitals discharge summaries.

Positive Life NSW remains cautious of the MHR especially in regards to PLHIV who are sex workers; currently or have used drugs and alcohol (licit and illict); have less than two diagnoses and see only one or two doctors; live with a criminal history or are involved with the criminal justice system; are sexually active and non-monogamous, polyamorous or single; receive a sexually transmitted infection (STI) diagnosis and treatment every six to twelve months and are not taking reasonable precautions.

The MHR Framework due to be reviewed in 2022, outlines that the secondary use of data will not be shared for commercial and non-health-related purposes such as Centrelink and law enforcement, including direct marketing to consumers, insurance assessments, and eligibility for welfare benefits. However, Positive Life still holds serious concerns around any secondary use of this health data, even if the data has been de-identified.

Jane Costello, President of Positive Life said, “While health data can be de-identified, we also know that there is the potential for that data to be re-identified as well. This holds particular concerns for WLHIV and other smaller demographics, who may be more easily identified.”

“The ongoing issues of consent, which are not explicit and based on opting out, these practical models of secondary use and consent are yet to be resolved,” said Craig Cooper CEO of Positive Life.

“The potential risk of criminalisation for certain PLHIV is high.  The current model for PLHIV is not enough,” he said.

“We recommend that that if you have any doubt, time to opt out.”

Craig Cooper, CEO – 1800 245 677 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

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