Can Parents Access Your Private Medical Data on My Health Record? If You're Under 18, Maybe

Here’s what you need to know.

Update (14/11/18): The deadline has been pushed back to 31 January 2019 after a decision was made in the Senate.

Update (01/08/18): Health Minister Greg Hunt has announced the government will allow Australians to have all information stored in their My Health Profile deleted, even if they do not opt out prior to 31 January 2019. The original article is as follows.

As Aussies evaluate whether or not they should opt out of My Health Record, the Australian Association for Adolescent Health (AAAH) has raised concerns about the privacy of under 18s.

"If you're under 18, the default position appears to be it's your parent or legal guardian who is the one who controls the record, and, at the moment, given we're in that opt-out period, is the one to say, 'Yes I want to opt out'," Dr Melissa Kang, President of the AAAH, tells Student Edge.

"If you want to [take over or opt out] as a 14 to 17-year-old, you can, but it's not an automatic right. That's our main concern, really.

"Young people should be given a choice and have a say in how this happens. We might find that the majority say, 'Nup, happy for mum and dad to look after this,' but there'll be some who don't. There'll be others who haven't thought about it yet," she adds.

Unfortunately, time is running out for young people and their parents to have the necessary conversation, awkward as it may be, even though it's not yet entirely clear how much information will be stored in My Health Record.

"As [young people] mature as well, become sexually active, perhaps experimenting with drugs and alcohol, doing some sort of health risk stuff, that's stuff that's important for a young person to be able to talk to their health care professional about, in private and confidentially," Dr Kang says.

"That information won't necessarily go into a My Health Record, by any means, but it could inadvertently do that, and that's our concern as well."

So, let's take this step by step:

My Health Record is a federal government initiative to list all Australians (besides those who opt out) in a national digital database from 31 January 2019. The Record will include all your health information, which can be shared and accessed by medical professionals across the country.

Australians have until 31 January 2019 to decide if they want a My Health Record or not. Anyone can cancel their account after that date but all pre-existing data will be held for either 30 years after your death or 130 years after your birth (if your date of death isn’t known). This 30-year hold on your information, after you've requested to cancel your account, is being debated in the Senate the week.

If you're under the age of 18 and listed on your parent's Medicare card, they can opt out on your behalf.

If you're over the age of 14, you can still opt out individually online. You'll just need your Medicare number handy.

The Government says it's reviewing the situation for teenagers between 14 and 18 to see whether the system undermines their medical privacy.

Okay, great, but what's this about parents accessing their kids' medical data?

Fun fact: Parents don't always have a right to the private medical information of their kids once they reach the age of 14.

In 2003, the Health Insurance Commission changed its privacy policy, requiring 14-year-olds and above to give consent before their parents access their Medicare records. That's also the case if the teenager is still on their parent's Medicare card (except in some rare instances).

However, as the ABC reports, parents can register their child for a My Health Record and view it until they turn 18, unless the child actively takes control of their record at age 14, and remove their parents as authorised representatives. Children can also appoint their parents as Nominated Representatives if they still want parental assistance.

"That's a very difficult situation for a young person to find themselves in," Dr Kang says.

"It is completely not in alignment with the current state of affairs; that young people have the right to confidential health care and to control who sees their information.

"It's also not in alignment with the way the federal government set up access to Medicare information, which has been in place for a very long time."

The Australian Digital Health Agency (ADHA), which is the government department implementing My Health Record, tells Student Edge: "If a child is 14 or over, and an authorised representative is managing their My Health Record, Medicare claims information is not uploaded to their record."

"A person, including a child, can also request a healthcare provider not to upload information to their record."

The AAAH is now calling on the ADHA to implement a similar 'consent' request as with Medicare records. This would mean children aged 14 to 17 would have to give consent to their parents if they wished to access their record, or give consent to let them act as authorised representatives.

"Many, many teenagers... may, in fact, have the intellectual capacity to understand their health care and to consent to their own treatment," Dr Kang says.

"This is a young person's right; it has been for a very long time, and we're worried that it's being taken away, just through oversight and not really thinking it through and not consulting with young people," she adds.

Remember, you have until the end of 31 January 2019 to opt out of My Health Record, and you can do so online. Otherwise, give 1800 723 471 a ring, or grab an opt-out form from select Australia Post outlets.

If you want a My Health Record, you don't need to do a thing, except keep all of the above in mind.

The ADHA reiterates: "Australians can manage privacy and control access to their My Health Record including what information gets uploaded and who has access such as family members, carers and healthcare providers. This empowers them to share and control their health information with doctors, hospitals and other healthcare providers from anywhere, at any time."

Header Image: YouTube (My Health Record)