Amid the flurry of claims and counterclaims regarding My Health Record (MHR), Living Positive Victoria felt to re-advise our members of the risks MHR poses for PLHIV and what they can do about it.

Why was My Health Record created?

My Health Record was created to digitally store individual health data. In addition to supporting your care, the data in the MHR system has the ability to give insight into the effectiveness of your services and treatments to improve health outcomes. This in theory sounds beneficial but there are major security implications of that data.

Why is there cause for concern?

There has been far more questions than answers when it comes to concerns around privacy, confidentiality and who has access to individual health information stored on MRH. To date, there has been six (6) incidents of data breach notifications within the system.

In addition, the current legislation does not specifically state that a court order is required to access a patient’s record. This legislation is in the process of being amended and the My Health Record Act will be brought into line with the existing Australian Digital Health Agency policy. However, there is no set date on when that will take place.

HIV continues to be a stigmatised disease and disclosure remains an important factor that must remain in control of PLHIV. We recognise and acknowledge the government’s response to these concerns and hope that these will be resolved in the near future.  However, in its current state, MHR does not provide the security and privacy for PLHIV around their status and we encourage PLHIV to take steps to protect that.

How can you protect your privacy?

My Health Record, in its current state, poses more risks rather than benefits for PLHIV. We encourage all members to opt-out of MRH until these serious issues are addressed. The deadline to opt-out is 15 October 2018. If you do not choose to opt-out, you will automatically have a health record by the end of 2018. However, if you opt-out now, you can still opt-in later.

How can you opt out?

Go online to myhealthrecord.gov.au OR call 1800 723 471

What you will need:

  • Medicare card or Department of Veteran’s Affairs (DVA) card

Plus one of the following

  • Drivers licence
  • Passport
  • ImmiCard

*If you don’t have these documents and still want to opt out call the help link on 1800 723 471

Are there any benefits?

People living with HIV who have multiple or complex conditions will benefit from their health specialists being able to easily share information with each other. This will assist them in providing better health interventions and link individuals to other services that might be required for appropriate care.