CHOICE membership

MyHealth Record - Coming to Us Like it or Not


#81

Miz Laying the blame somewhere :grinning:


#82

Yet another example of a Conservative government pretending to “improve” on what their predecessors began. In this case, I doubt that Labor had it substantially "right".

In Labor’s defence, they were dealing with a system that’s both difficult to change and almost impossible to work with. Practice software is typically proprietary. Although the software producers don’t explicitly own the information in their software, Intellectual Property issues make it practically theirs.

There are many good reasons for electronic health records. Not least, the value of a mass of information for data-mining in the interests of public health. By all accounts, MyHealthRecord is not in suitable formats for that, nor even for basic record-keeping.

So it’s back to the beginning. Estimates of public monies sunk into this project range into the $billions. It’s a pity, but it looks like we’ll have to write off most of it (if not all). It seems to me that the first step must be to have all practices and hospitals using standardised, non-proprietary (publicly-owned, probably open source) software. A quick Google search turns up plenty of candidates.


#83

I know there are links to articles above but read this one for the back story. It is seen as an opportunity for entrepreneurship.

www.theguardian.com/commentisfree/2018/jul/20/there-is-no-social-license-for-my-health-record-australians-should-reject-it?utm_source=esp&utm_medium=Email&utm_campaign=Politics+AUS&utm_term=281699&subid=25514514&CMP=ema_792


#84

I think they are usually preferred in public, but what you wear in the privacy of your own home is your own business.

On more serious matters, I have opted out of this nightmarish, Orwellian scheme. There is overwhelming evidence of the inability of anyone - including governments - to secure data. The data that this system will hold is incredibly personal, and will be of enormous value to some people. Some of those people will have direct access to the data!

The system has been designed to be opt-in, and there are plenty of options for you to select what information is kept on there, shared with third parties after being ‘anonymised’ (how well, who knows?), and other important decisions that users need to make. Just turning an opt-in system to opt-out - without redesigning it - is a recipe for disaster in itself!

It is a safe bet that the list of who can access your health data will grow - with or without your knowledge and/or consent. We have been given a three month window in which to peer into the future on the basis of past experience; given how poorly this government has managed data, I can see no basis for wanting them to hold mine in this database.

I hadn’t realised that privacy advocates had so much to gain from keeping my information out of the wrong hands. On the other hand, ‘experts’ in a particular field tend to have very clear biases. Ask who benefits from this system, and then let me know where to look for bias.

They could, but isn’t a centralised database so much more convenient? I’m sure there are all sorts of reasons that insurance companies and lawyers ‘need’ access to my health data - but that is a lot harder for them when it is scattered across various agencies and private entities.

You think this is either/or? It’ll be stored on both, creating double the risk.

Try? Sure (as long as we can cut costs at the same time). Succeed? Well, there is a reason there are things called zero-day vulnerabilities. They are only discovered after they have been successfully exploited. There is no perfect software, and no perfect security. We also have a government that is happy to cover up for private sector hackings (‘they only have to report this because of those strict UK laws’)! We have never seen an independent report on the failures of the 2016 census, and this government still has not explained how Medicare card details came to be for sale in the darker corners of the Internet.

The PBS already has this ability. Work well?

Valuable data vs. programmer time?

Please - this is a family forum!!! :astonished:

Not one that’s dying?

I recognise that the government already holds a lot of data about me - and cannot avoid that. This, though, is merging lots of data into one set and then giving access to a whole bunch of individuals and organisations. I’ll pass, and keep the lists of medications and allergies in my pocket where they have been quite safe up to this point.


#85

From the article:

The framework for secondary use of health data under My Health Record has only just been made public. Its details are vague, but what is clear is that it exposes Australians’ health information to a potentially staggering array of interested parties…

A proposed Letter to the Editor from the Link archives (and yes, I realise he didn’t get everything “right”):

Opt out of My Health Record

The My Health Record system is founded on a betrayal of trust. The Government got it approved as an opt-in system. Hardly anyone opted in, so they changed the rules and made it opt-out instead.

You have until mid-October to opt out. This is the only chance you will ever get. After that, the best you will be able to do is “cancel” your record, which won’t delete it. It will still be in the system and at risk.

Hundreds of thousands of people will have access to your record. Over the years, that will become millions. You cannot control who uploads things into your record. You have no right to check what is uploaded into your record. You cannot control who sees your record. You cannot find out who has accessed your record, nor what they do with it. You cannot correct or remove documents from your record.

The Government has made it very clear in the legislation that it intends to make your medical data
available for commercial use and that your medical data may be used against you by agencies such as the police and the ATO. The Government says that will never happen - but the actual legislation says it can.

Maybe you trust the current government. But do you trust every future Government for the next hundred years? Because that’s how long they plan to keep it.

This is not a party-political issue. Both sides seem fine with the idea of defaulting all Australians into a huge, poorly-controlled, poorly-protected, poorly curated database of dubious medical benefit.

The only way to protect yourself is to opt out. Seriously - do it now.


#86

I see the Singapore Governments health database has been hacked (Even the Prime Ministers). Too late for them to opt out, the datas been compromised & can never be be totally deleted.

Just another question. Lets say I have all my health records on the database, I am allergic to penicillin, the database is hacked & this information is removed. I get involved in an accident & the Ambos check the website discover no allergies & administer penicillin. I am likely to die aren’t I? Would the minister who implemented this scheme take responsibility for my death.


#87

I am a bit concerned about information broadcast willy nilly - it won’t just be legitimate enquirers hunting around.


#88

I trust that is a rhetorical question. It does posit an often ignored oxymoron though: “Ministerial responsibility” :slight_smile:


#89

The same applies if the information is not on MyHealth record. If one choses not to use MyHealth for medical record and history purposes, and has an allergy to say medicines which pose a significsnt risk, one needs to accept the responsibility that medical personnel may administer these same medicines not knowing a life threating allegies potentially exists.

The risks of a hacker removing/deleting records is remote. The risk of medications being administered which cause problems unknowingly is real and substantially higher possibility should one be incapacitated and in need urgent medical attention. This is particularly the case where a known medical condition causes the incapacitation and the medicine usually used to treat this condition causes a severe reaction.

We have experience of a friend who can’t be administered some general anesthetics…and has had a near death experience to find out he a severe reaction to it. In case of severe trauma, anesthetics are commonly used and these pose a significant threat. While he has used the medical chain type warning system in the past, these are not fail proof as they can be removed from the body during a violent accident. In such cases a MyHealth record may prevent a severe reaction or death…as the medical personel would be able to check records to confirm suitability of proposed treatment.

If one choses to not use MyHealth, they must be responsible for medical personnel administering medications blindly (not knowing individual’s reactions or other medication one is on) and be responsible for potential consequences.


#90

The same applies if the information is not on MyHealth record This is why I carry my critical info on an SD card taped to my medicare card along with attached note.

The risks of a hacker removing records is remote. Tell that to the 1.5 million people who’s information was hacked on the Singapore Governments health database.

If one choses to not use MyHealth, they must be responsible for medical personnel administering medications blindly This is true but that is why I carry my critical info on me, your statement would also be the same if your medical records are hacked & vital information is deleted

Interesting to note Liberal Federal MP Tim Wilson has decided to opt-out & the man appointed by Malcolm Turnbull to transform the Commonwealths digital public service would opt-out, not much of confidence booster is it?


#91

The problem is not new. Solutions are well established. There are many sources of such products. They can even be found on eBay. First-responders are accustomed to looking for such alerts. Relying on a centralised, online database for that purpose is akin to using thermonuclear explosives to crack walnuts. :wink:


#92

Au contrarie. I suggest it is like using google or youtube to crack the walnut when either is running on a single 386 powered PC with Windows 3.1.1.


#93

Are we back to the implanted RFID tag?
Isn’t one of the key requirements in an emergency that we all have the same solution.

What ever the solution, it is highly unlikely the first responders are going to waste time looking thru wallets and medicare cards while you are in cardiac arrest or turning blue or … If you are not conscious they will be too busy doing their assessments and trying hard to keep you alive.

No doubt at some stage they will seek out your identity, realise you were assaulted, and wonder who stole your wallet. If you are conscious missing your wallet will be more of a concern to you than them. Fortunately not all modern phones take SD cards. Your data will be safe for a while.

The medical alert bracelets or necklaces are well known. Perhaps this is also a better place to have your electronic data. What ever the method all first responders would need to carry compatible readers. It will always be quicker for them to simply read the bracelet for just the few things that are vital. Eg allergies, blood type, etc.

The need for more complete medical history can no doubt wait until there is follow up treatment. Eg at the hospital where a centralised record could be more readily accessed. This is a different need to that of first responders.

Two different scenarios, two different needs, two different solutions.

It would serve us all well if the medical profession responded with what they require to do their job in each instance.


#94

I am strongly advocating for the Opt In approach. The benefits far outweigh the imagined fears. A recent unexpected visit to a big regional hospital through emergency was enough demonstration for me. Within half an hour the teams there were able to access my records and treat me appropriately with full knowledge of my history, previous treatments, allergies and a complex medical history.
I was examined, treated and admitted very quickly and no one had to ask me repetitive questions or tried to build my medical history from scratch. That didn’t stop a new team talking to me about this recent episode and adding to the treatment regime.
Computer systems might fail from time to time and yes there are hackers but that’s life, these days. And I had direct experience of how this system could save mine.

Dr Anne Marshall


#95

Honest questions as some of your post is implied.

Was this from MyHealthRecord as implied or from another source?

In that half hour or less could they have questioned you and ‘rebuilt’ your medical history more quickly? I assume you were lucid? If not and you were not accompanied how would they have been able to establish your identity?

Is it the case that a medical team is not constrained by privacy to access one’s MyHealthRecord if they are unaccompanied, unconscious, or whatever? Apologies for the flippancy, but are doctors more trustworthy than banks? (I believe the vast majority are far more trustworthy than banks but as in any profession there will be some who are not.)

With regard to scientific process, a good outcome from ‘A’ could be but is not necessarily a better outcome than ‘B’ unless one had experience with both, and that is obviously not on with a single emergency. A track record would be more convincing to me[quote=“a.marshall, post:94, topic:15714”]
Computer systems might fail from time to time and yes there are hackers but that’s life, these days.
[/quote]

It is so but imagine what would happen if the internet/networks summarily failed or were hacked into disfunction. No electricity (control systems compromised) and no communications followed by no water, no transport as the fuel supplies could not be pumped, leading to no food supplies by inability to supply and charge/pay in dark shops. That spectre alone should cause concern about total reliance on technology. It is often written that the biggest losers in a modern all-out war will be the most advanced nations, since the lesser advanced have lesser dependence on our modern systems, but I digressed.

Picking and choosing what to rely on is all we can do, and I appreciate your perspective.


#96

I’m thinking a bar-code above the eyebrows. :wink:

Critical information is best in human-readable form. It’s far more reliable than any electronic gadget. More comprehensive record-keeping is where electronic systems come into their own. Sadly, MyHealthRecord is evidently not much chop as a record.

Agreed. The change to opt-out smacks of desperation. Despite incentives to medical practitioners to sign patients up to the electronic system, takeup was mediocre. Our government had to do something to avoid the project looking like a failure.

An opinion on which medical professionals don’t all agree. The shortcomings are all too real.

Every individual will decide on their own circumstances. There’s plenty of information in this thread and elsewhere to facilitate that.

For mine, I’ve pretty-much decided to opt-out. I’m well past retirement and should be among those to benefit most from a well-constructed centralised medical record. Unfortunately, MyHealthRecord is poorly designed. A better product might compensate for the inevitable risks.


#97

Er Mark - that was Dr Anne Marshall.

Anne


#98

Yes they are and the example that you gave, along with others also collect and store personal and medical information on their own (cloud) computer servers.

The information they collect is as follow:

Member’s personal information is collected through information provided by you (or your representative for purposes of joining the Foundation) and is stored on your current membership file. The information may include:

  • your name, date of birth and membership number;
  • your mailing address, contact number(s), email address(es) and emergency contact details;
  • information on any health conditions and personal needs you may have, together with details pertaining to your doctor’s name, address and where your hospital records are kept;
  • your credit card details (as required to execute the payment of membership fees and purchases);
  • information on the products and services we have provided to you;
  • a record of any queries you have made; and
  • transactional history relating to your usage of our services.
  • We also collect sensitive information about you such as medical conditions, allergies, medications taken, blood group and other such relevant information (e.g. special needs and requests), and store this on your membership file.

We will only collect any other personal information, including sensitive information, in accordance with the Act.

I am not sure if I would trust their online security systems to store the above information more securely than say that of MyHealth Records. It is often these smaller organisations which are targeted to gain information and then to set up phishing or other hacking methods to then access higher security information systems (using customers as pawns to gain access).

It is also worth reading their privacy policy as they state:

‘We share information from cookies and other technologies with third party providers, including Google Analytics. The information collected can be combined with other information, allowing us or those third parties to identify users at an individual level, their behaviours, activity and needs.’

This is the current problem with ones medical records. There are a significant number and variety of organisations which collect/record and store medical information on behalf of their customers. One as happy to provide these organisations/companies with ones personal and medical data as one thinks it is safe because they look trustworthy. I am sure that years ago many of us thought companies like Sony, Apple, Google, Facebook, Yahoo etc were also trustworthy and had their customers interests (including data security) as the highest priority. This has been found not to be the case,

The other problems with alternatives is they have not been widely accepted by many in the community, as bands/jewellery makes it obvious to others that they have some sort of medical conditions. Such in itself invades ones own privacy as these devices in effect publicise when worn, something to others.


#99

Exactly! Let’s play at being adults and take responsiblity for ourselves.
If one has medical issues and are worried about them then maybe this MyHealth record could be useful for them. If not, then it’s just another hackable database holding your personal/private information.
I have no issue with opt in but to be forced to go onto an online system (which can’t be guaranteed as secure) to tell the Govt I don’t want them to opt me in is totally disrespectful and a travesty of our human rights.


#100

I presume you’re trying to imply that all medical professionals hold the same views. There is evidence to the contrary:
Bastian Seidel, President of RACGP

Do you support the overall concept of the government’s My Health Record system?

No, personally I don’t. The ‘My Health Record’ or ‘PCEHR’ was central to the National eHealth Strategy. This was based on a commissioned report by Deloitte which claimed that $10 billion could be saved over 15 years if $500 million were spent on eHealth. The program was never meant to improve patient outcomes, it was designed to save money. Years down the line, we’ve already spent $1 billion and are putting an extra $500 million into it now. We’re well over time and over budget.

The program is now ‘too big to fail’ and still has bipartisan political and COAG support. The IT industry loves it. It’s time to critically re-evaluate what we actually wanted to achieve.

Have you ever or do you plan to use the My Health Record system in your practice?

I have my own ‘record’ and it was very tedious to set it up and to activate it. Patient interest has been insignificant despite PR campaigns by the PHN and local hospital authority. I have less than three patients who asked me in the last six months, and of course I’m happy to upload data for them. Most still prefer a paper printout of their records though and some bring in a USB stick.

Medic alert services can store data. They can also be no more than a wrist-band.