In 2019, every Australian, including people living with HIV (PLHIV), will have a My Health Record (MHR) account set up by the Australian Digital Health Agency (ADHA), unless you opt out.

The My Health Record (MHR) account is an online database owned by the federal government of summary information which is uploaded by you or your GP and can include data from your specialists, pharmacists, participating pathology labs or diagnostic imaging providers, or someone authorised to represent you. This information can be accessed by your healthcare providers like doctors, specialists and hospital staff.  It’s been touted as one of the biggest advances in the Australian health sector since Medicare.

There are many benefits of this national Australian digital health record system. For example, all your health information is in one place. If you change doctors, all of your test results and medical information are easily accessible to your new doctor without the hassles of transferring your file to a new practice. If you’re in an accident or you can’t speak, your healthcare providers can better coordinate your care, and emergency staff will be able to act quickly and confidently with access to all your medical history. Eventually, you’ll be able to organise medication and prescription repeats online and have them sent to your local pharmacist without extra costly appointments for a simple refill. As PLHIV, these are big advantages!

Having said that, there are significant considerations for PLHIV who remain opted in when My Health Record goes live.

Positive Life believes the ownership and confidentiality of your personal electronic health data must remain under your full control as a PLHIV. As confidentiality impacts all of us living with HIV differently, we all need to be fully aware of the details; details such as who has access to our private health data, when they can access it, what the potential implications are and what it might be used for.

Who can view my personal My Health Record and when can they access it?

The digital health record system has been designed with security settings in place, including options to restrict access to certain clinical documents. That means that you have a level of control over what your treating doctors and specialists can see within your record. In the case of an emergency, for example, any advanced security controls previously set by you can be overridden for five days. This might seem reasonable enough to the average person, but there are a broader range of people who can access your health data than is advertised.

Under the current legislation (My Health Record Act 2012) law enforcement agencies can gain access to your health data without the independent oversight of a court or tribunal. If the ADHA is led to “reasonably believe that the use or disclosure is reasonably necessary” in the prevention, detection, investigation, or prosecution of criminal offences, breaches of the law or improper conduct and in “the protection of the public revenue” (e.g. taxes), your health data can be shared to any law enforcement agencies that request it. The impact of this could be huge for many of us living with HIV.

Many PLHIV and other groups of people who are affected by HIV, such as sex workers, people who inject drugs (PWID), Aboriginal and Torres Strait Islanders, immigrants and refugees, and anyone receiving welfare payments, already encounter significant stigma and discrimination and can often be the object of unwarranted law enforcement scrutiny and investigation. PLHIV in these vulnerable groups with a MHR will find this is a barrier to engaging healthcare providers when law enforcement agencies have access to their private health data. How can doctors and health services keep confidentiality for PLHIV, PWID, sex workers and other vulnerable populations if law enforcement authorities can access the information? The safe, confidential space of a non-judgemental doctor’s consulting room is now at risk.

We’ve already seen health data being shared for purposes other than primary healthcare around the world. Recently in the UK, the National AIDS Trust joined the Parliament’s Health and Social Care Committee, to call on NHS Digital (the equivalent of ADHA here) to stop sharing immigrants’ personal health information with the Immigration Department. Data sharing for immigration purposes scares people away from healthcare. People living with a range of infectious conditions will avoid diagnosis and treatment which in turn jeopardises public health. While this is just one UK example, we have recently seen a number of Australian and global breaches of data that people previously thought was confidential or protected.

Why is this important to me?

Many of us who are living with HIV have had chaotic times in our lives. When you’re honest with your doctor in the confidential appointment setting to get the physical or mental healthcare you need (eg., for drug use), MHR can place you in the criminal justice system, even if your doctor had no intention of reporting you.

Any database holding your personal information is a risk to privacy. In December last year, academics from the University of Melbourne showed how easy it was to take de-identified data and re-identify individuals through a process of relinking publically known details. In this case the re-identified records included “potentially exposing if someone is on HIV medication, has terminated a pregnancy, or is seeing a psychologist.”

While the MHR system may provide some security measures, it is not a private database. Any information remains the property of (and available to) authorities for your lifetime or “130 years after the document was uploaded”, even if you cancel your MHR account.

While the MHR website states that ADHA “has no intention to sell de-identified data from the My Health Record system” it is exploring opportunities to share your health data with app developers, commercial entities and insurance companies. Positive Life raised concerns on the behalf of all PLHIV in NSW, in a 2017 submission on ‘secondary use of MHR data’, focusing in particular about the lack of individual consent and the full or partial commercialisation of private health data with both the NSW and Federal Health Ministers. We are currently awaiting the report and its findings.

If you need further information or support about My Health Record and what this means for you please contact Positive Life on (02) 9206-2177, 1800 245 677 (freecall) or email contact@positivelife.org.au

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