Opt out period for national electronic health database begins

[Vero]

It appears “My health record” offers 3 months period for us to adjust preferences to who will have access to our medical data.

there could be some ad campaign about it on tv, but I have not switched it on for a while. I have noticed short article about it in the press. I am posting about this here as there maybe many people like myself who periodically do not monitor or deliberately avoid news

I don’t have many details about it yet. It maybe a good idea to check this federal gov initiative.

[Vero]

Quotation from the article (By national medical reporter Sophie Scott and technology reporter Ariel Bogle):

”...From today, people who do not want their medical records stored on the national electronic database will have three months to opt out.
Steve Hambleton from the Australian Digital Health Agency (ADHA) said after October 15, there would be a month of auditing who was in and who was out...”

[Quercus]

Thanks for sharing this Vero.

My husband is angry about this topic too. He's been telling me the my health record database has had feedback from medical professionals saying they don't find it helpful and have concerns about patients privacy and yet the government seems to be intent on pushing it quietly through.

The opt out window is extremely small considering this is such a massive concern. For a country without national identity numbering this feels like a backdoor way of forcing us all to be registered at birth.

I learnt today you can opt out for your kids too. If you leave it or change your mind later you're not able to delete this.

This doesn't sit well with me in the slightest. I don't like the idea of a workplace running a medical and that doctor having complete access to all my medical records. It feels like an invasion of privacy to me.

Nat

[Vero]

Hi Quercus,

I believe the facade for this initiative is patients’ wellbeing in form of reducing the number of erroneously prescribed medications. ??? In this case it would make sense to introduce an app or a “medical passport” that could be used by a select number of patients to record their medical treatment.

medic alert and other databases are already there to hold and provide information about life threatening conditions and medications.

...so the benefit for the patients?

Following a $ trail Medicare is expensive and without a photo id I could see how Medicare benefits could be used by non Australians. However with an option out, this would not be a solution. Unless opt out is a temporary measure.

there is of course an issue of online security.

[Dniaiu]

The govt changed from opt-in, to opt-out very quietly.

The Terms and Conditions are longer than those for most comparable systems - the recommendation is to allow at least half an hour to read through the first time!

Even if you apply every security option, there are still a bunch of scenarios where they can be overridden, and your records are open for up to 5 days.

The info will be shared with other agencies and departments, including law enforcement.

The ADHA’s website has published a report on the woefully inadequate privacy policies of mental health apps, and yet these apps might be authorised to access your MHR data with your supposed consent.

There will be NO public information campaign!

Seriously, everyone needs to look into this - the Business Insider and SMH have some articles which clearly show the concerns about not opting out during this period. You can't do it later- opting out layer just means the records will be kept, but you will not be able to access them.

If you have any concerns about theft, misuse or unwanted sharing of your personal information, you need to opt out now.

[blondguy]

Hi Vero Quercus and Dniaiu

Thankyou for the heads up on this one...I will check my status...

Greatly appreciated

Paul

[EllieC]

Jumping in late to this thread, but I came here to start my own on the topic and found this one. I'm interested to see everyone's thoughts on MyHR, especially since information around our mental health is particularly sensitive to us. Health records is my area of work/study so I've been following the initiative, but I'm still very much in two minds about whether to opt-out or not. My two cents:

There really is a need to find more efficient ways to transfer patient information - it's 2018 and most of our communication between health providers is still through the incredibly unreliable fax system. Lack of access to timely information has been implicated as a factor in multiple patient deaths.

Another consideration: honestly, your doctor can access all the info that's going to be on MyHR anyway. It won't have a full copy of your medical records (complete records are HUGE, it would be impossible). The sort of things it has can already be requested by any doctor looking after you and they don't typically need your permission unless it's particularly sensitive information. MyHR will really just expedite that process.

My MAJOR concerns:

1. I don't trust the government's cyber security capabilities. (Incidentally, in my experience the government aren't the ones deliberately abusing your health information - which they already have a lot of without MyHR. They are actually the most heavily legislated group in regards to privacy of their records)

2. I don't particularly trust private practices not to do anything dodgy with my info. There was a story recently about a clinic sending information on potential clients to a personal injury law firm, which is a disgusting breech of privacy. The privacy act is actually disappointingly soft on breeches like this

3. 99% of people who work in health and have access to this stuff are respectful. Unfortunately there are occasional people who are not. Say you upset somebody and they happen to be a GP receptionist. There's nothing to stop them from accessing your record and sharing it with everyone. The system records every access, they would undoubtedly be caught and fired. But that's not going to make you feel any better if you've had personal stuff shared, the damage is already done.

On the whole, even though I desperately want to support a more modern and technologically advanced way of managing information, these things make me lean towards opting-out at this stage.

It's something to keep thinking about at least

Ellie

[GoodWitch]

Thanks for this topic I've been reading a lot about this the last few days and leaning toward opting out for all the reasons listed. I don't trust the govt to keep the data safe, and I don't like the way they seem to be sneaking it through...no ad campaign, forcing people to opt out instead of in. This all raises concerns for me. Why the lack of transparency? maybe I'm simply suspicious of this government.

Thank you Ellie for your take on the benefits of something like this because even the articles I'm reading written by doctors are questioning if the benefits could outweigh the risk. and like you said 99% of people dealing with this information are professional people who would never do the wrong thing but it only takes one. I do agree we need an electronic system for transferring of patient data, but I'm not sure I like the way the current government is going about it. There's also the issue of privatisation, they seem to want to privatise everything what's to stop them privatising this in future and all our info being onsold?

[blondguy]

Hi EllieC

Thankyou so much for the 'pro's as well as the cons. You have brought clarity and experience to this thread topic

I was approached at Centerlink by an 'official' to sign up....he mentioned that if I have am ill anywhere in Australia the physician would be able to treat me more effectively if they had my health records available to them on a database instead of attempting to call my GP.

I find it weird now that they were scouting the waiting area of a major Centerlink branch for people to sign up

I did sign up....and am starting to regret it...

Huge thanks for the heads up EllieC and have a good weekend too!

Paul

[geoff]

Hi Vero, I also want to thank you for bringing this to our attention and what worries is that 'there's nothing to stop them from accessing your record and sharing it with everyone', and what worries me is that your information may be disclosed to other healthcare recipients, that maybe disturbing as far as I'm concerned.

I have opted out, although medically I shouldn't have, the reason is because of my Life Insurance policies and have obtained this paragraph from a blog:

'My Health Record system” is exploring opportunities to share your health data with app developers,
commercial entities and insurance companies', that's exactly what I don't want to happen.

I understand the benefits if something happened to me 100 km away, but I'm 63 and for all these years it won't be any different and personally, I feel uncomfortable knowing that my medical file will be available.

Everyone has their own thoughts.

Best wishes.

Geoff.