Your data, your privacy: Using My Health Record securely

Teresa Savage, a consultant in LGBTIQ+ ageing and health and our Project Manager Roundtable and Digital Health, looks at how everyone, especially older LGBTI people, can keep their My Health Record data safe and secure.

Do you use My Health Record? Are you worried about your privacy?

My Health Record is an online summary of your key health information. It is available to you and your healthcare providers whenever it’s needed, including in an emergency. It can hold a summary of your medical history, a record of your vaccinations, test results, prescription information, and your advanced care planning documents.

My Health Record has the potential to be very useful for older LGBTI people. Having your records in one place can be invaluable when you have multiple care providers. Your record can help you and your healthcare providers keep track of your health information

But many older LGBTI people are concerned about the security of their data. We’ve all heard about data breaches from big online systems, and the dangers of our personal details getting into the wrong hands.

Older LGBTI people also worry about privacy. Sensitive details about our lives may be documented as part of our health record. Many of us have experienced our details being used to humiliate us, denigrate us or even be refused service. Patient confidentiality is critical in our relationships with our health providers.

So how do you make the decision about whether to allow your health information details to appear in your My Health Record?

The first thing to remember is that you are always in control of your record. You can decide what information is available there and who can access it. You can update your settings at any time and set up notifications that let you know when any new healthcare provider has accessed your My Health Record. You can see who has accessed your record, when and what they did.

Secondly, your personal information is protected by law, including the Privacy Act 1988 and the accompanying Australian Privacy Principles. Your health provider is trained in how to manage personal information, but you may want to remind them about their obligation to protect your privacy.

But, in the worst case, if you believe your personal information has been leaked or used inappropriately, you can make a complaint by contacting the My Health Record help line on 1800 723 471. The Digital Health Agency will address your complaint and get back to you. After that, if you’re not satisfied with the Agency’s response you can go to the Office of the Australian Information Commissioner (OAIC). The OAIC is the Australian privacy regulator and has a range of responsibilities and powers under the Privacy Act 1988.