CHOICE membership

MyHealth Record - Coming to Us Like it or Not


#21

The value of electronic health records illustrated. An elderly friend said her husband collapsed while on holiday. Because he had granted her access to his medical records and medications, she was able to show this information to the staff in the casualty ward who were able to make a diagnosis based on his doctor’s reports and to make certain there would be no conflict between the medications that they would give and the medications prescribed by his doctor. A successful round of treatment. His doctor also knew what treatment has been administered. His wife was happy her husband had been enlightened about electronic health records.


#22

Yes, there is an upside to having a centralised data record.

We’ve relocated and changed the practices we use often. I can count nine times, plus a few more for when the Practice did not meet needs. It would be better to go forward than stay how we are now considering our past experiences:

  • keeping track of your history and the children and sharing all between two parents is onerous,

  • we found that a practice/doctor claims ownership privileges for their copy of your records,

  • in the dim dark past we were able to cart a large paper package of our records from one place to the next,

  • now all we get is a 2 page printed summary out of the desk staffs data base which needs you to jump thru burning hoops to obtain,

  • with many years in rural Qld it was also common to see a high turn over of staff hence every new face became a long consult while you tried to close the gap and remember,

  • the myhealth data base as I read the requirements is not 100% of your medical information,

  • the actual data that will be kept is limited and appears to be similar to the questions on those routine admitance questionnaires, the ones you need to fill out before hospital, day surgery or even an X-ray,

  • myhealth will not replace the medical practice records or duplicate them exactly, eg side notes for future visits, recommendarions, family history etc.are not provided for,

  • and if you are ever put in the position in emergency of having to provide support for another older family member - it is a must have. Why - because even close family have secrets and need privacy, however saving time and getting all the facts right can be critical. We’ve been there, and if the family member has a complex history all the greater the risk you might forget something in the heat of the moment.

On balance myhealth is a sensible and practical initative.

The Fed Govt has gone low key on myhealth when it could be all over the positives. No doubt they are trying to avoid the complex debate becoming an election concern? And perhaps why there is an “opt out” provision.

Yes I worry about data theft. There are a great many other data stores. All of which as others have pointed out have even more valuable personal data. Which is why some of us no doubt would support an “opt out” option with the ATO. The Govt no doubt agrees. With the exception of a few select ex parliamentarians subject to court actions the Govt does not prevent Australians emigrating to another country to live.

The debate over data security is still worthwhile. If the data base functions as per the ATO records for access or Centrelink thru myGov that would be equal best.

Allowing third party access to data is a concern that needs further clarification and debate. Also the authorisation of third party apps by which we can access our myhealth records appear to be a potential liability.

It would be reassuring to know it is mandatory jail time for the directors, owners and the involved staff of any business or organisation that causes or permits a breech of the standards promised, and that there is a Government indemnity for consequential loss or damages.


#23

There appears to be confusion amongst many as they set up a Personally Controlled Electronic Health Record with MyGov (PCEHR). Like with any government, the current government has changed it name to MyHealth Record confusing many.

Maybe the government should have been more explicit in its communications that of one had already set up a PCEHR through MyGov, that its name would be changed to MyHealth Record.

The question also needs to be asked why one agreed to PCEHR, but choses now that they don’t want a MyHealth Record. I suspect that the recent media articles and scaremongering has a place in relation to this change.


#24

I opted in to My Health Record 12 December 2016 due to all my health issues.

I attend one doctor who works in a large practice which is completely computerised (using one of the standard packages that medical practices use I believe).

I had a look today, and apart from the information I input in 2016 there is nothing. Zero.

Luckily I have emailed myself a copy of my medical history which I or the wife woman can forward (via our smart phones) to medical staff without too much difficulty.


#25

While some say that access will be controlled it currently isn’t so safe. From the ABC News site:

“Earlier this month, it was revealed Australia’s biggest online doctor booking service, Healthengine — one of My Health Record’s partner apps — had been passing on patient information to third parties, including legal firms.”

"Records created in trial zones

Michael Davidson said he spent hours on the phone trying to understand why he had a My Health Record.

It appears at least one person may have been registered for a My Health Record during opt-out trials without their knowledge.

In 2016, the Department of Health tested an opt-out scheme in the Northern Queensland Primary Healthcare Network and in the Nepean Blue Mountains Primary Healthcare Network to examine consumer reaction, among other questions.

Just under 1 million Australians were registered for a My Health Record in 2016 during the opt-out participation trials, according to the ADHA.

Michael Davidson in Melbourne tried to opt out on Monday, only to discover he already had a record created in 2016.

His Medicare card was registered in the Blue Mountains, one of the opt-out trial zones, but he told the ABC he no longer lived in the area and no notification about the program reached him.

Mr Davidson said My Health Record phone operators told him on Monday it appeared he’d been rolled into the trial as a result.

“I’d rather my data never goes into My Health Record, and if it’s there, is permanently deleted,” he said.

He’s worried that the system creates a “massive honey pot of data”.

“I’m a software engineer, I’m well aware of the risks of any kind of electronic data, and weighing up that risk — I’m 35, I’ve lived 35 years without having a My Health Record or equivalent,” he said."


#26

I think it comes down to the basic questions ‘do you trust government to be able to run/contract/oversee/outsource a highly secure system’ and ‘do you trust government to never monetise our information’ and ‘do the previous answers outweigh the benefits as you see them’?


#27

From memory, when we joined MyGov…mainly for tax lodgement and also immunisation records (as one needs immunisation recordsfor various reasons now days) a few years ago, we were given the option to join the then health records. I can’t remember if it was an opt-in box we ticked or didn’t tick the opt-out button…but I assume many others did the same when setting up MyGov. In our case it could have also been the case that we consented to join the then PCEHR to enable or activate the immunisations records function.

Unfortunately my detailed memory is not perfect from about 5 years ago.

One person who may not have opted out in a trial does not account for the other potentially 5,999,999 that may have chosen to use the service.

Yes, but it was also shown that this app does not link with MyHealth Records. One needs to take the information off MyHealth and load it manually into the app (if it has the capacity to do so).

Even the ABC in their reports on the app a month or so ago stated this and looks like who ever wrote this didn’t read past information released from the ABC or has joined the scaremongering party.


#28

A piece about the security of the system from ABC again (Twitter Account) with Paul Shetler (Partner, Digital Agency Accelerate HQ; Former Head, Government’s Digital Transformation Office)


#29

According to Viewing My Health Record using apps “Authorised third party apps give you secure ‘view only’ access to your My Health Record.” So my reading of this is that the apps do link and access the My Health Records, they just can’t write or edit information.


#30

But neither do you know how many don’t and didn’t know in those trial areas which covered about 1,000,000 people. Sure only one has spoken up about it but maybe many haven’t because as yet they still don’t know. I understand your pro stance and I don’t agree with it but it is a valid and appropriate choice for me to disagree with the program as is your choice is for you…

You would have previously, if not in the trial areas, had to opt in ie you had to actually choose to create the record. This I agree with as it is a direct choice, I do not agree with an indirect choice ie opt out. Opt out captures those who are not digitally literate but would choose not to join if they understood how to take that course. I have been on the phone trying to opt out (as I am unable to do so online) and the wait times have been so long I have had to cease the attempts and will try later. I think the numbers will climb as more become aware of the problems no matter how some others may see them as not being problems.

I will repeat, if we found that opt out in any software we installed we would call it a potentially unwanted program (PUP) and most virus and malware engines would rightly ask us to get rid of it. Just because a Government want to collect more data in one place on everyone doesn’t make it right or wrong, it makes it worthy of being questioned and if that questioning raises concerns then scepticism or suspicion may be rightly held. Scaremongering though? I don’t think so just prudent concern and rightly so.


#31

Wasn’t aware of the apps as we don’t and won’t be using them.

Irrespective of this, HealthEngine have now advised that they will no longer be sharing any information to third parties. The ABC comment is a little deceptive to say the least.


#32

They said they will be doing so but the release has already occurred and who knows what new apps will come along or what changes may be made about those policies as it becomes a more valuable and thus possible to monetise asset. The ABC was not in the least deceptive/deceitful as it makes clear in the article about the changes. It is actually a very correct, factual and needed piece of journalism contrary to your assessment. In fact the headline actually references changes because of the backlash, and the Minister only after the concerns ordered an urgent review, where was the oversight before the problem?

This act by the App provider in fact reinforces many of the concerns correctly held by others and shows this system is woefully unpreppared to deal with the security of people’s data that it should be holding of paramount importance from the onset.


#33

Just thought I’d throw this in.
“The bureaucrat overseeing My Health Record presided over a disaster-plagued national health record system in the UK, and has written passionately about the belief people have no right to opt out of health records or anonymity.”
via Crikey


#34

Q: Who woulda thought ‘we’ would hire an expert with a failed track record?
A: Seems all ‘we’ ever do
:frowning:


#35

The government has spent (IIRC) $4 billion on various iterations of electronic health records over the years. They can’t afford to have it seen as a failure.

The Privacy Foundation’s view (which some will no doubt dismiss as “vested interest”.
https://privacy.org.au/campaigns/myhr/


#36

Nothing this government has ever done is a failure, or even second rate. Just ask any Liberal or National MP or party member. Then check with most of the so-called journalists we have who start trembling if they have to ask anything beyond a Dorothy Dixer. If they are not persuasive ask the PM or anyone on the front bench. Nothing but good, better, and best for us. :smiley: :smiley: :smiley: (nb. Anything less is the oppositions fault as they tell us so regularly.).


#37

Would this be scaremongering or reporting on historical record? Reads like it is project typical of our esteemed government…


#38

Yes, it would fall into that category. The first I had heard of the UK system was from critics of the proposed MyHealth…saying that Australia system is flawed as one of the heads was from the UK. This could be the best person involved as they wouod have a wealth of information, including UK history.

Then the critics also (contradictory) state "They clearly have seen what has worked and what hasn’t worked in other countries and they didn’t learn from the history,

This is an interesting comment if it was factually correct, but it isn’t. I am aware of a number of other countries where similar systems have been highly successful. Take the Estonian health record system which was one of the first adopted world wide. If one country would he concerned about health records online, it would be Estonia as they often are under attack from various parties, including the Russians who like to hack to disrupt. Estonia also appears to be at the forefront in relation to security to protect its citizens e-data. They have announced recently that they will be investing in blockchain technologiewnto furthre secure data (as a layperson, not sure how this works but appears that is is widely supported).

When I read something, I check its reliability. If it is unreliable or factually incorrect/inconsistent, then it loses credibility. This article proves to be in this category.

It would also be interesting to know the thoughts of experts who intimately know the MyHealth Records rather than former employees (grudges?) or those involved in another countries failed system assuming Australia is the same. This then would be something worth taking on board.

It is also worth noting that Australia’s health record system (PCEHR) pre-dated that of the UK model…the relevant question is was the UK system then modelled in the Australian system? If it was, then there would be concerns and the UK system would be a relevant discussion point.

The other question is whether the Australian government recently disbanded the PCEHR and decided to adopted the UK model instead. If yes, then the Newscorp article may have merit.

Maybe the government, as Australia has already dived in the deepend in relation to online government services, needs to also focus on latest and merging technologies to ensure ongoing confidence in the e-data aystems (such as health, taxation, social security, etc which are already online and under the MyGov banner). It would also be interesting to know if this is occurring.

Unfortunately some of the above questions may never be answered in a rational way by government or informed experts in the MyGov platform/umbrella. It appears that politics will come first over factual information. This has been the case for the MyHealth Records re-rollout.

At the end if the day, the government stored enormous amount of data on us and the health records are the least of our worries. To date, whether by chance or good management (or secrecy), this data has been kept secure. Any data management system is not bulletproof, but one expects the government, like that of Estonia, to try and keep one step ahead of those which try and exploit these systems.


#39

OH NO, if any living being is listening and reading we knew about this monster, I’ve alerted my close friends, and on day 1 or 2 all of us have opted out.


#40

I’m worried about insurance companies getting hold of your health information, and using
it against you, for example, if you are in a car accident, what if the insurance company can
get hold of your medical history, and find out you have say an eye disease, they could claim
that against you even though the disease does not affect your eyesight.