Opting out of MyHealthRecord before Oct 2018 (Australia)

[lafarfelue]

(I was unsure where to post this, so mods please move if you feel it should be elsewhere.)

This will affect all Australian residents and citizens and requires individual action to be opted out.

I thought this relevant to everyone with a chronic illness, including those who still work to those who are 100% bedbound and rely on disability pension.

Message from the Australian Government (https://www.myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record):
"This year, you will get a My Health Record unless you opt out. If you don’t want a My Health Record, complete the online process by 15 October 2018. You will need your Medicare card and driver licence (or other identification) to complete the opt-out process."

Here is some other information worth considering before the shut off date of 15 Oct 2018:

https://twitter.com/i/web/status/1018693613461520384

https://twitter.com/i/web/status/1018694161711558658

https://twitter.com/i/web/status/1018694692874027008

(note; the above person was a trained journalist and is now finalising her medical degree, working in Australian hospitals)

https://www.crikey.com.au/2018/05/3...as-far-too-much-power-over-us-and-wants-more/

https://amp.smh.com.au/technology/breach-inevitable-in-digital-health-records-20180715-p4zrmb.html

 

[Mel9]

I’m not sure but I think I might opt out. If Pme end up in hospitalafter an accident it might be best if the staff are not aware?

 

[Art Vandelay]

Thanks for the reminder @lafarfelue . Opting out was easy and only took a few minutes.

 

[alex3619]

I am thinking about the issues, and I might opt out. I did notice some discrimination there though ... many who are disabled may not have either a drivers licence or a passport, and hence cannot opt out. This IS discrimination. Its about giving only a privileged part of the population an option to opt out. Many ME patients, particularly patients in their late teens or early 20s, are not going to have a licence or passport. This is just wrong.

I am still investigating.

PS You can cancel such a record once its established with probably more ease than you can prevent the record being created. You can do this at any time via the myGov website.

PPS There is a helpline for anyone with problems including lack of ID. Its 1800 723 471

 

[Snow Leopard]

I like the principle of the system, I don't like the way they've done it in practise...

Also, it seems a little too easy to opt out other people with only modest fishing of personal data.

 

[Shoshana]

I am not in that country, but these issues are becoming important, in other places now as well.

About what to have in our records, especially with more of them being computerized.

What other options do they give you, I wonder.
I wish there were more options than opting in or out.

Such as, there might be some parts of our records that we would want available, if we were brought unconscious to a hospital. And some parts we might not.
Such as, allergies? Essential meds to have? Meds to never have.

Optimally, it would be better to decide at the time, which parts of your medical history, that you believe are pertinent in any situation, but again, if you were not able to communicate , or cannot remember everything, and you had opted out, how would ANY medical info go with you, I have wondered, when I have been asked questions by doctors, my replies being recorded. ???

I also agree with above post that noted, that not all of us, have undisputed types of ID's, so the GOV doesn't always accept ours. Also, other good issues people are raising. Confusing times, with computers now, we don't know sometimes, which options are better or worse.

And also, I think it is tragic that we have to wonder whether to hide some of our major medical issues, for fear of bias or stigma or stereotype, but it is too true. Makes me sad, and also , mad!

 

[lafarfelue]

It is definitely up to each individual to decide for themselves whether they want to opt out.

Personally, that alone shows how ableist this program already is. As mentioned by others, what about those who are too disabled to take action on this, or don't have enough identifying information?

The privacy issue is a concern. Full access, without a warrant, to your private medical information provided to groups like local councils, the RSPCA, Centrelink, the police and many others. This is My Health Record's own FAQs. See previously linked article about sharing a person's private medical information and this:

https://twitter.com/i/web/status/1018720325268221953

As for ppl having access to your medical information when it's most needed; the Health Minister himself has said that MyHealthRecord should be treated as 'incomplete'. Eg. The idea that an ER would technically know what to do for a patient do based on the info on a file should imo not be trusted, might be dangerous

https://twitter.com/i/web/status/1018690370454970368

On deleting a record once created:

https://twitter.com/i/web/status/1018640852187373569

Please just consider this very very carefully. Once signed over, your rights are more difficult to get back.

Please also speak with others about this. Many do not have access to depth of information provided online or even via some news media.

 

[alex3619]

Such as, there might be some parts of our records that we would want available, if we were brought unconscious to a hospital. And some parts we might not.

The claim is you can do that. Its not clear how this works though. You can, its claimed, access your own record as well.

 

[alex3619]

"They can't even scrub the data and the record is kept for 30 years after death" Its kept for 130 years after your date of birth or if they are informed its kept for 30 years after your date of death. However while info is not scrubbed it is suspended if you cancel your account, so that if you reinstate it the info is still there.

The most worrying thing is what do you do about mistakes in the information, which is at high risk if you have ME?

 

[Art Vandelay]

The claim is you can do that. Its not clear how this works though. You can, its claimed, access your own record as well.

I logged into MyGov the other day to start my tax return and saw an option to link MyHealthRecord to your MyGov account (much in the same way you'd link, say, Centrelink or the ATO to it). I assume that's one way you can access it.

 

[CCC]

So call me even more paranoid then everyone else ...

In addition to a health record I have no real control over, there's also rabid data matching going on here too.

To opt out, you need to provide two forms of ID - a medicare card number and something else (e.g. a driver's licence).

Apart from the fact that my son has no id (too sick to get any), this process in itself establishes a database of medicare card numbers matched to driver's licence numbers, ripe for identity theft. I have never provided these two forms of id together to anyone. (I also have no myGov account because I know better than to trust security.)

So how secure is this new database of matched ids going to be?

I'll be calling the 1800 number to see what we can do.

 

[AndyPandy]

I decided to opt out of the system yesterday.

Nearly two hours later I was no longer part of the system.

I tried to opt out online first but was unsuccessful. I was directed to a phone number.

I waited for a very long time and eventually spoke to someone who tried to process my opt out request. They were unsuccessful. Apparently because I already had a MyHealthRecord. Which I didn’t know about!

So she transferred me to another person. Supposedly to cancel my MyHealthRecord. Another very long wait. She told me she couldn’t help me because I already had a MyHealthRecord!!!! Déjà vue now. She couldn’t cancel it.

So she transferred me to “another level”. Which sounds like some sort of game but it wasn’t.
Forty five minutes later I spoke to a man who apparently cancelled my record. But he was unable to provide me with any confirmation that my record was cancelled. The system apparently doesn’t allow for this.

So the only way I can check to see if it has actually been cancelled is to ring again (not likely) or see if my doctor can access it next time I visit him.

I have no confidence in this system. I recently discovered that my medical record includes a month in hospital for stress. Which never happened. I know that there are other mistakes in my record but don’t have the energy to fix this.
I can only imagine what has been written in my various records over the years of visiting ME denying doctors. I don’t want a central repository for this kind of misinformation.

And I have concerns about privacy and security of information.

My own doctor has told me he will be opting out.

I share his lack of confidence in this system.

 

[Shoshana]

Thanks for that input @AndyPandy and everyone else, also. it is good to share the info and the ideas. I think we all need to face this issue, even though the Australia deadline is of central importance at the moment.

I cannot deal with the type of phonecalls that Andy describes, which I have to hang up in middle, and I do not make it to the conclusion, of either phone calls or most website instructions processes either.
And I do share the concerns of the matched data, that was mentioned above, as well.

How to change misinformation in the record is of paramount importance, and totally unresolved.

A person would need to be extremely well, AND have hours that are not occupied, to do much of these things. Many of us are not up to it. People with MANY situations are not up to it, are not able to, or do not have that amount of time that is free of other obligations..

I wish that things were set up, so if you do nothing, you are NOT opted IN to anything.
Instead of the other way around, as this and other things are set up.

I have wished that about the financial things in the past as well, and even more important, with medical and personal info.
And then, there are the release from privacy forms that one must accept, from all doctors offices now, in order to be seen, and from housing and other benefits, ….. if you don't sign it, you get no help from so many systems now.

Doesn't seem right at all.

 

[lafarfelue]

@AndyPandy that sucks, what a hassle. I hope it didn't affect your well-being too much.

Feels like a bit of a nightmare

 

[AndyPandy]

@Shoshana

I went online and made the calls from bed.

With these kind of calls I put my phone on speaker and just lie there until I get a live person on the phone. And try to relax. The actual activity and talking was a tiny amount of the almost 2 hours. But there have been many years of the past 7 where I would not have been able to do this. Including talking.

It’s hard to deal with the requirements of modern life with ME.

 

[ahmo]

I'd started a health record in 2013, so that I could record the supplements I use. But having read the 2 following articles, I've decided to opt out. One of the most devastating and under-discussed flaws in the scheme is that it opens access to health data to a slew of parties beyond primary care providers.

https://www.theguardian.com/comment...my-health-record-australians-should-reject-it

https://www.theguardian.com/austral...tical-to-failed-uk-scheme-privacy-expert-says