My Health Record: How does it work? What is the aim?

How does it work? Why do we need it?

My Health Record is dividing the nation. The level of interest skyrocketed when the official opt-out period began on Monday. Suddenly, people care. What is it? Why do we need it? Why is it an opt-out system? How safe is my data? Here, we present an explainer plus the case for participating and why you should opt out.

What is My Health?
My Health Record is a government initiative that aims to store your complete medical history – controlled by you – on a national database so it can be accessed by approved health professionals.

It was launched in 2012 under the name – the Personally Controlled Electronic Health Record – and when it was rebadged in 2016 there were 2.6 million users, according to the Turnbull Government.

The aim
The logic – and it does sound logical – is that you and your healthcare providers have immediate digital access to your medical history. You may have a life-threatening allergy, you may have had a lengthy battle with cancer, you may be taking a range of prescription drugs, you may have had a series of scans for a health problem. All will be stored on your My Health Record, making the list you carry in your bag or on a smartphone or in your head no longer necessary.

If you have a serious accident and can’t communicate, so long as your identity is clear, health professionals can make decisions based on your medical information.

The system should reduce errors and duplication of tests and scans and should reduce the number of ‘medical misadventures’. About 230,000 ‘misadventures’ per year lead to hospital admissions and cost $1.2 billion.

How does it work?
A My Health Record will automatically be created for you on 15 October if you decide not to opt out by that date. If you choose to participate but change your mind after 15 October, your record will be locked and kept until 30 years after your death.

The system is patient-controlled via a PIN. You can place as much information on record as you wish and view your record at any time.

You can opt to receive an alert whenever your record is accessed and there will be an audit history, which shows where and when your records were accessed.

PINS can be overridden in an emergency and for law-enforcement reasons and in the latter case, the record holder may or may not be told.


Is it safe?
The scheme boasts that it has “military-grade security” with encryption, firewalls and secure log-ins. But … it is not invulnerable. My Health Record deputy chairman Dr Steve Hambleton told Fairfax media he “can't guarantee that there's not a hole somewhere”.

Health Minister Greg Hunt said: “It's arguably the world's leading and most secure medical information system at any national level.”

The Law Council of Australia says participants should be cautioned about the secondary use of their data – for such purposes as research – and should have to opt in before it can be used for such purposes, even though it has been ‘de-identified’.

The My Health Record, however, does permit external health apps to access your records, with consent. However there have been reports that at least one of these apps had then sold information to law firms resulting in marketing material allegedly being pushed to patients who were urged to pursue legal claims.

What is it an opt-out system?
The system was originally opt-in but switched to an opt-out format this year after consultation with key healthcare bodies, including the Australian Medical Association, the Royal College of Australian General Practitioners, Pharmacy Guild of Australia, Pharmaceutical Society of Australia, Australian Healthcare and Hospitals Association and the Consumers Health Forum.

Do you understand the system? Are you happy to manage your record?

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    COMMENTS

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    ozrog
    20th Jul 2018
    10:26am
    I hve opted out. We know that yhe government will see this as a cash win fall to sell of data or maybr the whole thing.
    MICK
    20th Jul 2018
    2:21pm
    I tried to after the data breach due to apparent on selling of information.
    First thing is I tried to remove myself from the database through the My HealthRecords. That asked for driver's license and Medicare Card.
    So I logged on to my myGov account and this flicked me back to the same page.
    Third thing I did was to write to the organisation. NO RESPONSE!

    I have serious concerns about providing ANY sensitive information to ANY organisation which makes claims about this being safe when they have passed information onto a third party who has no right to have it.
    If this gets up then don't be surprised if any manner of business will be able to find out all your personal information for a fee. This is both dangerous (identity fraud) as well as discriminating against some people in our community.
    Last thing is do we not have privacy laws? So WHO decided these should no longer apply? This government? Please explain!
    Retired Knowall
    24th Jul 2018
    7:41pm
    deputy chairman Dr Steve Hambleton "can't guarantee that there's not a hole somewhere" .
    That just about sums it up.
    If you don't Opt Out now, you wont be able to down the track, if you do Opt Out now you will be able to in the future, when and if they make their system 100% secure.
    Mrw
    20th Jul 2018
    10:36am
    Check the other conditions that permit access to and use of the reocrd--they include 'effects on the revenue' bureaucratic code for ATO and centrelink can get access..and we know what Alan Tudge did with centrelink records. we NEED digital Health BUT not this leaky overall system with 900,000 people entitled to access it other than you.. and no protection once the data is downloaded. ADHA has spent near zero effort explaining and giving the real details of the system and 25million in promoting to to the medical professions- who are being paid to get people signed up..and its being run by the person who led the catastrophically failed UK similar system that had to be withdrawn entirely... as I said we NEED digital health-and soon- but very definitely NOt this overall system as it stands.. I could explain further if anyone cared-but most are just blindly letting the opportunity opt out now go by so that they can await the essential revisions into a defensible overall system to emerge before joining up...lobby your MPs to fix this system (I am not even mentioning the GPDr or anything else relevant in this post)
    David
    20th Jul 2018
    10:41am
    To me the benefits of My Health Record (MHR) far outweigh the risks.
    Sure, there are some risks with data security/privacy, but then there are also risks with internet banking, online shopping etc.
    If you are in great health, always see the same doctor and never travel beyond your town, the advantages of MHR are not that great, but if you travel frequently throughout Australia like I do, it's reassuring to know that your up to date health records can be accessed by any medical practitioners to ensure that they are well informed to give you the best treatment or advice.
    Rosret
    20th Jul 2018
    2:04pm
    I am really unhappy with Paywave and banking security. I just don't know how to get around it because politicians aren't interested.

    This is a total and absolute breach of privacy with obvious flaws. You are welcome to opt in. However should our children not have that right to choose as well?

    The Federal Government has stepped above the Law. There will be mistakes and people will die. So who will be liable? The government, the GP or the emergency department. We shall see I guess.
    David
    20th Jul 2018
    2:47pm
    Those who want a My Health Record don't have to opt in. By default, everybody will get a My Health Record unless you opt out. If you don’t want a My Health Record, you have to elect to do so by 15/10/2018.
    If our children are under 18, I don't believe they have the right to choose as they are minors. The law considers that minors don't have the capacity to make decisions such as this, hence their parents or guardians need to make decisions on their behalf. Of course if they are 18 or above, they can elect to opt out if they want to as they are no longer under a legal disability.
    Medical experts I have spoken to or read about have highly recommended to have a My Health Record as it can save your life. In my wife's case, she has had an operation to fix 2 cerebral aneurysms and a third one is regularly monitored. We travel frequently and I like the peace of mind of knowing that if we are interstate and she is having some issues, she can go to any doctor and they will have instant access to her health records, which could be life saving. It's a no-brainer to us (pardon the pun) to be in favour of My Health Record.
    GeorgeM
    20th Jul 2018
    11:00pm
    I agree with Rosret, it is a massive breach of privacy by this Govt to make personal data of people available to a large number of medical people without having obtained specific permission through Opt-in. Also, passing on private health data to research bodies, other Govt departments, etc. Definitely should be challenged by Legal people.

    Besides that, all future breaches of data security could add to that - is the Govt going to compensate those who did not opt in?
    Mrw
    20th Jul 2018
    11:03am
    There is no ontology verification procedure so the different languages and interpretations by different medical specialties are not picked up(at least as far as the very limited public data indocates).so the acuracy is still in doubt- in many caases uverified data is fatal in emergency cases of course, but the emphasis on these very tricky aspects has been carefully hidden from the general public-- i too feel strongly that we need a good digtal health system- but judging form the execution- full of the same sorts of errors that killed the NHS attempts in the UK- I have to impatiently await of properly l(and transparently might I add) verified designed and consulted system. The fact that is was designed long ago as OptIN also shows how the Opt Out desperation has NOT led to any of the re designs that are neccessary. The consequences are that I have little faith in the specific aspect of delivery that you place such store on. IF ADHA really felt that they had all this taped, they would have bene explaining it for months- instead of which......
    Rosret
    20th Jul 2018
    2:09pm
    10 billion pounds! Ouch looks like we have another 8 to waste yet!
    https://www.theguardian.com/society/2013/sep/18/nhs-records-system-10bn
    Rosret
    20th Jul 2018
    1:59pm
    What annoys me with the opt out is that you can't type in your medicare number and check whether there are no records stored. We have to take "their" word for it. I am not sure if I should opt in just to keep a track of what is being put on the database.

    One thing is for sure - if I did opt in I would seriously evaluate whether it was worth losing my privacy or better to just suffer it. I wonder how many teenagers would fit in that category? How many unwanted pregnancies will there be instead of going to a doctor?

    Will it be like Facebook - you can delete a record but it is just hidden not deleted? Of course. Only for 30 years after your death. - and of course you know why that is - your family will be linked to your parent's information.
    Roscoe
    20th Jul 2018
    2:28pm
    Interesting to know how many people are happy to die, so long as noone else in the world knows about their genital warts!
    MICK
    20th Jul 2018
    3:19pm
    Nothing to do with your genital warts.
    Everything to do with sensitive information being available to every hacker, insurance company, banker and health fund on the planet.
    Lark Force
    20th Jul 2018
    4:02pm
    Yes, Health funds and Insurance companies will be able to cherry pick clients and set premiums according to your likelihood of claims.
    AND just imagine, every hospital employee, and every clinic employee will be able to know all your medical history. If there's a skeleton in the records it will be known all around your town!
    So much for privacy!
    MICK
    20th Jul 2018
    4:04pm
    Exactly.
    Roscoe
    20th Jul 2018
    4:45pm
    Fair dinkum. So I suppose none of you have a Taxation, banking transaction/credit card, Medicare, doctors' or hospital record, Centrelink details, Drivers Licence, passport, rewards card, Seniors card, Myki (or similar) travel card, etc, etc ???
    MICK
    20th Jul 2018
    5:18pm
    Of course, but most of the above only have limited information. ON top of that as what information do these hold and WHO is managing them? Not a private provider?

    Quite apart from the security of your private information there is the issue of the sale of data detailing any health issues to organisations which WILL use these against people.
    I can see health insurance companies, banks, etc. lining up to find a way out of either accepting somebody with a slight medical condition or looking for a way out of paying a claim.

    By all means don't worry Roscoe. She'll be right..... Good luck.
    Lark Force
    20th Jul 2018
    5:19pm
    Point taken Roscoe, but the My Health Record will be accessible by a lot more people in the general population. And I posit than medical histories will be a juicier target for sticky noses than boring traffic infringement notices or shoppers rewards.
    Either way its another way citizens have their privacy intruded on.
    Seenitall
    21st Jul 2018
    12:40am
    Good point Lark Force. I wonder if the STD clinics are uploading all their records as well?
    KSS
    23rd Jul 2018
    7:29am
    Interesting Seenitall because most sexual health clinics (no longer called STD clinics!) see people without even having to know their name. You can be totally anonymous if you want to be. So makes a mockery of having to upload information when you don't know the name of the patient! Wonder where they log that?
    Charlie
    20th Jul 2018
    5:31pm
    They are welcome to my medical records. All they are likely to say is , "Too much Information."

    I just cant see how all this information from different hospitals and medical centers can be collated into one program unless it is re-entered.

    The information has to be presented in a useful format or it will be no good to anybody.

    How much of my 15 minute appointment is a doctor going to spend shuffling through computer records
    Seenitall
    21st Jul 2018
    1:22am
    You are right Charlie, that with the average individual's medical records spread over such a large number of doctors and hospitals they're not going to be much help to a junior doctor trying to make sense of it all at 2am in the emergency department. As you say the data will have to be re-entered to be presented in a useful form and this isn't going to happen at the GP clinic level where all the support staff are already flat out just doing their normal routine - they're simply going to upload the lot in raw form. All of this of course begs the question as to why the ADHA is willing to accept the information in this way and the plot takes a sinister turn as we wonder what it is that they really want to do with these records.
    Rae
    22nd Jul 2018
    8:33am
    They'll just check to see what medications you may be taking currently or any allergies. At least that was what happened last Thursday when I walked into a strange doctors office for a necessary script. He was having a bit of trouble navigating the new system but did find those two parts.

    I'll stay in as I don't really care who sees what. They are all strangers anyway and anyone who matters knows all about my skeletons anyway.

    Maybe they might be trying to work out how a smallish population like Australia manages to have so much disability, injury and illness.

    If some of that can be prevented it would be a good thing surely.
    musicveg
    22nd Jul 2018
    2:13pm
    Australia has one of the highest meat consumption's in the world Rae.
    KSS
    20th Jul 2018
    8:11pm
    Don't be fooled by the security you are meant to be able to control. You can manually change who can view the record and even which documents they can view. You can also tel your doctor what they can and can't upload. Of course this means you probably need a medical degree yourself to be able to read and understand the importance of every single document, test result, x-ray etc to decide who should be able to view it. You CANNOT delete any document already loaded. You can only hide it so it will be there whether you want it to be or not. And yes, the third party 'partners' who have access to all the data don't just include research institutes and health professionals, security forces and even insurance companies are among those who have applied for access. Insurance companies already go on fishing trips to your GP and other medical professionals when you make a claim especially in car accidents and the like trying to obtain more than just the relevant medical records related to the accident.Just imagine what they will try if they get given access to MHR!
    Rae
    22nd Jul 2018
    8:38am
    Insurance companies don't need a data base to be pure bastards and refuse to pay out claims. They already do that all the time. They can access financial records to see if you can afford to sue or not.

    Even getting a promised payout from insurance within superannuation doesn't always end up as promised.
    Kathleen
    20th Jul 2018
    8:51pm
    I am not opting out. The idea is to collate your medical information so it is available to save your life. Another good use for it is to look across the family and track cancers and other medical history. It could save a descendant’s life.
    We are already tracked. How do you think you get all those ads and phone calls?
    The presence of the internet negates privacy.
    So why not put it to good use for monitoring and studies. Computers could analyse the data for good.
    We use the internet so we must have some faith.
    Rae
    22nd Jul 2018
    8:41am
    I agree Kathleen. It may allow some answers to why we have such high disability and illness figures.
    musicveg
    22nd Jul 2018
    2:10pm
    No Rae it will not answer any of those questions because most of it is caused by bad diet, chemicals in the environment, especially hormone disruptor's and stress.And many pharmaceuticals also contribute. Whole food plant based diets have reversed disease in many people, check out the stories at forksoverknives website. This along with getting rid of chemicals in your life as much as possible. Cancer cells multiply when fed animal protein but not vegetable protein, has been proven in a lab. Chemicals in all our products are making our bodies weak and so is our lazy lifestyles. Stress from many areas contribute too. I could go on but most likely you won't believe me that is why I suggest you look at some websites and research data.
    SMMM
    21st Jul 2018
    10:34am
    Yes it is a DO I opt in, or NOT. I went to My GP yesterday and had to go away and come back, So they could get INFORMATION/ RESULTS Faxed through, which they should have got 4 months ago.So makes you wonder how UP TO DATE, MY HEALTH RECORDS all will be in
    anyway!!!!!.
    musicveg
    21st Jul 2018
    11:06pm
    I opted out, easy enough to do but why should we have to use our time and my internet data to do so, should have stayed as an opt in option only and we would not be having this discussion.
    Kathleen
    22nd Jul 2018
    6:03pm
    Who cares?! It is already out there and this one might save your life. Precautions will be taken which is probably not a 100% guarantee but risks are taken every day when you go for a walk or get on a train or take a prescription drug. It is a wonder it has not already been done when it can collate your medical history. People travel, change doctors, have an accident which makes this a good idea. If we were sufficiently paranoid we would not even be on the internet writing this comment!
    musicveg
    23rd Jul 2018
    6:22pm
    For those who are not happy with the 'opt-out' options, here is a petition:

    https://www.change.org/p/greg-hunt-mp-make-my-health-record-opt-in?recruiter=7258145&utm_source=share_petition&utm_medium=copylink&utm_campaign=psf_combo_share_initial...38i2_YM4T6S4HbzsSkvS9Q.0.c6rnGlxKQ7KhvMbCP4FQxQ.2&utm_term=384258
    GrayComputing
    25th Jul 2018
    8:59am
    There are no 100% secure computer systems, period.
    Anybody who says otherwise are liars or just pig ignorant living in la-la land
    Even the NSA got hacked into from outside the USA.
    100's of millions of our credit cards some with our privacy details are for sale of the black web.
    Every Australian government computer has known and future unknown flaws in both the Intel and AMD chips and their Cisco routers. There are no proven secure OS software Operating systems.
    So I am opting out of this totally insecure scheme .So should everybody else
    *Loloften*
    27th Jul 2018
    4:32pm
    Hahaha....& "they" told us that the NBN was the best/secure system!!??