Lived Experience Forum

[Former-Member]

Thanks Cheerbear ❤

[Queenie]

I entered my details into the opt out website @Former-Member. After which a pop up screen said I was unsuccessful in opting out because I already had a health record. I logged into mygov account and found it there, along with an option to cancel the record altogether. A few days later, I received confirmation of this cancellation by form of a letter in the post.

[Former-Member]

Oh no, I forgot about this 😞

[Fredd50]

Thanks lapses for the post.

I had never heard of this system and was pretty shocked.

It is sneaky, they could have sent everyone in the country a letter or even an email via the electoral roll. They could also have made it an 'opt in' rather than an 'opt out' system. So who knows what they are really playing at, or whether it's just general incompetence :-(.

I opted out and also called their helpline to get some understanding of what was going on. They have a 1800 number to call if anything goes wrong with opting out online.

It's a pretty I'll thought out system, medical providers are not supposed to access the system without consent but there is no security stopping them, it's an 'honour' system.

However, apparently logs are kept of all accessed by providers so if your sister is accessing your records without your consent you can make a complaint about it. For what that's worth. 

Thanks again for the post. 

[Baker85]

I have a myGov account that includes a My Health Record and yes, there’s already stuff on it but if you monitor it, you can actually delete whatever info you want. I deleted pretty much everything on there... this was two days ago.

[CheerBear]

I had a bit of a concerning moment involving My Health Record which I wanted to share.

A while ago I tried online to opt-out of My Health Record on behalf of my children because of privacy concerns but I kept coming up with errors. Life happened and I forgot to call the helpline to sort it out (kicking myself now) until an article about the deadline approaching jogged my memory and I finally called.

When I called I was told, to my surprise, that the reason I couldn't opt-out online was because a record had already been created by their other parent. I asked whether information about my children's location could have been accessed while this record existed and the vague answer was yes. As I have safety concerns about location based information being shared, I did some reading about access to My Health Records. This is what I found: 

A My Health Record will be created for everyone including children, unless opting-out before the updated deadline of January 31. A child's My Health Record can be accessed by any person with parental responsibility (a pretty loose term that effectively means both parents unless subject to a court order which grants one Sole Parental Responsibility). Even in cases where there is an intervention order/apprehended violence order in place, both parents are usually deemed to have 'parental responsibility' and can therefore access a child's record.

I found the above information here. A shorter version of these concerns can be found here.

If anyone is interested, there are some steps you can take to control access to or secure a My Health Record here. Or you could do what I did and opt-out (before the 31st of this month). You can also cancel an existing My Health Record online or by calling the helpline on 1800 723 471.

Really hoping others who might want/need to know this information, find it.