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Forums / Treatments, health professionals and therapies / Opt out period for national electronic health database begins

Topic: Opt out period for national electronic health database begins

22 posts, 0 answered
  1. Vero
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    16 July 2018

    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.

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  2. Vero
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    16 July 2018 in reply to 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...”

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  3. Quercus
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    17 July 2018 in reply to Vero

    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

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  4. Vero
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    17 July 2018 in reply to Quercus

    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.

     

     

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  5. Dniaiu
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    18 July 2018 in reply to Vero

    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.

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  6. blondguy
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    18 July 2018 in reply to Dniaiu

    Hi Vero Quercus and Dniaiu

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

    Greatly appreciated

    Paul

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  7. EllieC
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    25 July 2018 in reply to blondguy

    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

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  8. GoodWitch
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    25 July 2018 in reply to EllieC

    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?

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  9. blondguy
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    28 July 2018 in reply to EllieC

    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

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  10. geoff
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    28 July 2018 in reply to Vero

    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.

    2 people found this helpful
  11. PamelaR
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    28 July 2018

    Hello all

    Great discussion going on here about the Australian MyHR. Thank you for starting it Vero.

    Like EllieC, I too have a background in government recordkeeping. While on the surface I had initially thought about the positives of such a system - we are in an electronic / digital era where all our information is stored electronically, it does seem rather backward to have to fax paper work through. Though I do think it can be scanned to pdf and sent in an email.

    In theory i agree with having a system that manages the information so it's readily available, when, where it's needed. It makes sense for my health care. However, it's the actual security of the system that concerns me.

    My husband went to the doctor this week and came back with the - website address for myhealthrecord and the Australian Privacy Foundation. Our doctor in no way supports the system - his major concern is reliability, security, accessibility and privacy. His view is - it is hackable (more easily that any other government system). Also, during the week there has been further reports along this line.

    So we have both opted out for the time being.

    Kind regards

    PamelaR

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  12. quirkywords
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    28 July 2018 in reply to PamelaR

    5hanks for everyone’ s inout.the cynic in me says that there is already heaps of information on all of us and if we do opt out how do we know that there is some mistake and our information is available anyway.

    If we don’t trust the govt enough with our records how can we trust them not to use it.

    remember that number we could ring so we did not have unsolicited phone calls. well it didn’t work, I still got calls. just saying.

    Quirky

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  13. Just Sara
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    29 July 2018 in reply to Vero

    Hi Vero and thanks for this thread;

    I've spent 30 yrs in state govt where all dept's used to be separate. Even if they were down the hall from each other, they couldn't access information about clients without consent.

    These days, all state/federal govt departments are linked and have access to all sorts of info just by clicking a button. Medical info access for medico's makes sense, but when you consider Centrelink assessors for instance, who're doing their utmost to avoid approving people for MH disability benefits, they'd absolutely abuse this system in a heartbeat.

    I can see HR dept's using it to refuse job applications or promotions too. They can now access HR files from positions in any govt dept people worked in as far back as they want. This was illegal up until a few yrs ago. I know this because reading my compo insurance interview with my manager, I saw he'd disclosed info from my govt position 20 yrs before! The assessor wrote in his report he didn't need to know this and seemed the manager was trying to discredit me.

    I came across an email on my P-File where HR and managers were discussing a prior injury I'd disclosed looking for ways to get rid of me; it was disgusting what was said.

    I've been registered on the Health Records site for a yr and it's still empty. Like any data base, info has to be entered manually, so finding time for Dr's and their staff to focus on data entry for that many people using hard copy files going back decades is a long stretch.

    These so-called shortcuts are said to increase info access times etc, but honestly, how far are people going to take this (screw hard work!) attitude?

    I love my hard copy file which my GP (and psych's btw) let me go thru if I ask. This keeps them using terms that don't insult or include opinion. I once snuck a look at a file when I was pregnant and nearly had a fit from the disrespectful language used by my Gyno'. Never saw him again after telling him to change what he'd written.

    My last point? What if that database contains false or misleading information?

    I'll be talking with my GP about this soon.

    Sez

  14. Dniaiu
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    29 July 2018 in reply to Just Sara

    I feel that I have to correct the following statement :

    "Like any data base, info has to be entered manually, so finding time for Dr's and their staff to focus on data entry for that many people using hard copy files going back decades is a long stretch."

    My entire IT career was as a database specialist, and only a tiny percentage of data is entered manually. Interfaces to other systems have been around for ever, and systems can and do harvest information which is just passing by.

    For example, you pay your CTP, and minutes later the RMS says it's ok to register the car - there's no humans manually entering the data into either the insurer's or the RMS's databases.

    Already, there have been cases of health apps on phones forwarding personal info to lawyers and insurers, resulting in the govt.

    Even if you consider paper records, high-volume scanners linked to optical character recognition has also been around for ages.

    A few days ago (20-Jul-2018) hackers stole health info on 1.5 million people from the Singapore national health database. Do you think that they might have been promised that their database was secure??

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  15. Just Sara
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    29 July 2018 in reply to Dniaiu

    Hi Dniaiu;

    I stand corrected. Info isn't always manually entered.

    Personal info at my GP, psychiatrist and psychologist is in hard copy files except medication. What I meant was, 'they' would have to do it manually if I give consent. They wouldn't dare without asking me first either because I'd let them have it with both barrels.

    I've tried accessing 'my' info at our hospital and had to jump thru hoops to get it. I had to know every detail of when, who, how and why before they'd touch their computer. It was overwhelming with my damaged mind to consider so I ended up not getting it. Why isn't it in my Health Record on MyGov to access now?

    Hacking's been around forever too so I'm not surprised at the recent situation. However, it's not until events like this occur that the media report it and people sit up and take notice like it's only a new thing. The Health Record database has been around for yrs; as I said, mine's been empty since I registered.

    It's a shame you only focused on the above discrepancy as my point was about inter-agency 'abuses' and lack of privacy re govt control. This wasn't to undermine or ignore what's been commented on in this thread. It was an added issue that's important to me.

    Information's power, so whoever wants the upper hand for whatever reason, will hack into any database, not just this one. It's the internal use and abuse of information that's my personal concern due to previous experience.

    It's about the next time anyone applies for a job and doesn't want the prospective employer knowing they have MH issues. That's the individual's right to disclose or not. Yet...it happens. In my opinion, this is pseudo-legal hacking.

    There's got to be a paper trail of consent and application to gain access to info. Without this, even the Prime Minister's at risk. I'm sure he'd jump at the chance to give an interview over something that's been stolen from a 'secure' database...NOT! He's no different to me in this instance.

    With paper, there's only one copy. Online there's millions!

    Sez

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  16. geoff
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    30 July 2018 in reply to Just Sara

    There has been much said and how true it is because at Centrelink no one who knows you is forbidden to access your file, but it doesn't stop a friend of someone you know access your information and then pass it on down at the pub.

    Anything stored on the database will undoubtedly be hacked into, that's a challenge for any IT specialist, and I know when some passes away the insurance company will go looking, searching for anything that you haven't disclosed to them when taking out the policy.

    Even if you change doctors from one clinic to another one, access to records can be done, I don't trust it at all.

    The only privacy remains within yourself.

    Geoff.

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  17. EllieC
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    1 August 2018 in reply to geoff

    Hi all

    I noted on the news this morning that some of the concerns that we (and many others apparently!) have expressed have been listened to by the gov and they are now changing the legislation to require a court order for other government agencies to access your MyHR - this is somewhat reassuring, although I would like to know more about under which circumstances a court order would be granted.

    Under the current legislation, commercial businesses like insurance companies do NOT have access to MyHR... but I think it would be far too easy for them to slip a cheeky amendment into the legislation to change that without the general public noticing.

    By the way Paul, I believe the second part of todays legislation changes means that you can opt out at any stage and have all information on your record wiped - so if you're feeling a bit of buyers remorse about signing up already, deleting the record will be an option. Personally I'm still holding out to make my decision closer to the date.

    Ellie

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  18. geoff
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    1 August 2018 in reply to EllieC

    Hi EllieC, if an insurance company can get a court order then the whole system breaks down because wouldn't it be better for them to spend $10,000 rather than to pay out $400,000 if they had accepted your policy but had a few questions in doubt, then what's the point of having 'My health record opt out'.

    No one should be able to gain access to your record.

    I believe it's possible to have all your files deleted at some stage, so if you have opted out like I have, then it would be inconceivable and too expensive for any insurance company to try and obtain your records through court now.

    If you feel strongly about this, then write to your Federal Member.

    Geoff.

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  19. EllieC
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    1 August 2018 in reply to geoff

    Hi Geoff

    Without meaning to alarm you, if you've signed up for life insurance you almost certainly have already given them permission to access your health records. Usually when you sign up there is a mandatory clause you sign to say that you authorise release of these records to the insurer at their discretion.

    So if you don't have a MyHR they cannot access that obviously, but certainly they can submit a written request to any hospital/your GP/specialist you have attended to be given relevant information from your files at those facilities.

    Moral of the story: if you're going to lie about your medical history, you have to lie to everyone. They compare notes.

    In all seriousness though, I guess what I'm getting at is that I think maybe this public conscientiousness about MyHR is a good impetus to have a look into when the rest of your information is and isn't private. Some of the concerns people have raised in the media about MyHR are things that already happen with your existing health records under current legislation.

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  20. Just Sara
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    1 August 2018 in reply to EllieC

    Thankyou so much Ellie;

    Your posts have enlightened and reassured me that a public outcry can work. Policy can be a quagmire especially when it comes to keeping UTD with amendments, so the info you've provided is invaluable.

    Like many on BB, I don't like to watch the news as it can trigger. I get snippets here and there about issues that affect me or my family, but usually steer clear of upsetting topics.

    I see you've only been on board as an active member for a short while, so I'd like to welcome you with open arms to our BB community. I hope your experience here has been pleasant and supportive.

    Kind thoughts;

    Sez

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  21. Dniaiu
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    3 August 2018 in reply to geoff

    Hi Geoff,
    regarding "I believe it's possible to have all your files deleted at some stage" the Myhealth website says
    "If you remove a document, depending on the document type, you may be able to reinstate it at a later date."
    That's not deleted! It's still there, ready to have a Show/Don't_Show flag changed!
    https://www.myhealthrecord.gov.au/for-you-your-family/howtos/remove-information
    Also from the MyHealth website, regarding cancelling your record:
    "Once your record is cancelled, it will be kept for 30 years after your death or, if the date of death is unknown, for 130 years after the date of your birth.
    It may be accessed by us for maintenance, audit and other purposes required or authorised by law."
    https://www.myhealthrecord.gov.au/for-you-your-family/howtos/cancel-my-record

    This, IMHO, is too important to be discussed based on anything other than the current facts, which is why I have included the URLs.

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  22. Vero
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    5 August 2018 in reply to Just Sara

    Hi All,

    medical files contain false information - not easy to correct

    Number of students shared with me their experiences with mental health system. Similar to my experience their medical files have alternative version of their history. I don’t have time to check the stats how many people report this, but I would guess there would be a lot of people like myself who did not have time to report this or choose not to report it to minimise trauma to themselves.

    I have raise the problem with neuropsychologist’s superior but of course neuropsychologist was seen to be right. I would have to put up huge fight to have her “alternative reality” changed or removed.

    Human rights in Australia

    the right to privacy is not guaranteed and other human rights are not protected by our constitution. Although Australia signed the international covenant for civil and political rights, thiS has not been rectified and the best power it offers is to lodge a complaint. Unlike Britain, Australia has no Bill of Rights. Unlike the USA, Australia’s constitution does not incorporate provision to protect human rights and liberties. The best we have is reliance on case law which is unpredictable in outcome and requires the use of major legal resources to prosecute.

    The electronic health database appears a very utilitarian ambition. Quite opposite any liberal ideals. Our liberalism more and more resembles socialism.

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