‘If in doubt, opt out’: My Health Record

By the end of 2018 every Australian, including people living with HIV (PLHIV), will have a My Health Record (MHR) account established by the Australian Digital Health Agency (ADHA).

The benefits to a digital health record is having health information in one place, including our prescriptions, medical conditions, allergies, test results, and x-ray reports, as well as MBS or PBS items and Medicare.

It can also hold documents uploaded by our healthcare providers, like specialists’ referral letters and hospital discharge summaries. This is what is known as ‘primary use’ of your MHR.

Positive Life has concerns about the ‘primary and secondary uses’ of MHR for PLHIV and believes this will undermine the benefits of MHR.

Examples of ‘secondary purposes’, with or without the consent of the individual record holder include: linking health data across systems and passing information to law enforcement; insurers accessing your health data in the case of vehicle accident claims and to set insurance premiums; accessing your health data in the preparation of legal proceedings before any court or tribunal; benign or active surveillance of individuals or populations; and marketing for research and clinical trials.

Positive Life has serious concerns about stigma, privacy, and the potential criminalisation of PLHIV with the ‘secondary use’ of MHR.

These impacts can pose significant risk to PLHIV: those who are sex workers; who use drugs (licit and illicit); who are sexually active and non-monogamous, polyamorous and single and not practicing reasonable precautions; immigrants and refugees living with HIV; with a criminal history or involved with the criminal justice system; and women living with HIV.

For these PLHIV, personal and sensitive health data could become available for ‘secondary use’ at any stage.

Confidentiality impacts all of us living with HIV differently. We need to be able to trust the Commonwealth Government and be fully aware of who has access to our health data, when they can access it, what it’s being used for, and the potential implications.  

Positive Life believes the ownership and confidentiality of health data must remain under our full control as PLHIV.

In mid-2018, there will be a three month opportunity to opt out of the MHR. 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!

• You can subscribe to an email service on the My Health Record website which will notify you when the opt-out period starts.
• By June 2018 Positive Life will provide a step-by-step resource on how to opt-out.
• For people in the Nepean Blue Mountains area who already have a MHR and cannot opt-out, Positive Life will be offering step-by-step resource on how you can cancel, restrict, or modify your record.
• For people living with HAND or limited access to a computer, Positive Life can assist you to opt-out.

If you need further information or support about what this means for you please contact Positive Life on (02) 9206-2177 or visit bit.ly/MHR-PLHIV.