MyHealth Record - Megathread

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.

2 Likes

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.

4 Likes

Er Mark - that was Dr Anne Marshall.

Anne

1 Like

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.

3 Likes

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.

5 Likes

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.

3 Likes

This is true. One needs to determine if the risks of their records being stored indiscriminately around the country/world by non-government organisations or companies is better than MyHealth Records.

One also needs to think about their own risks of medical professionals not having up-to-date medical history when deciding on a treatment because one is incapacitated or forgot to fully provide ones history.

One also needs to realise when past medical history may be relevant to future treatment. As a non-medical layperson, even I don’t know when this would occur.

Everyone will be different and one must make their own decisions rather than being persuaded by those with vested interests or biases in either remaining opted in or choosing opted-out.

3 Likes

They can be, but if one becomes a member which even those with wristbands mostly do, then the information collected is outlined in their privacy policy.

It is also worth noting that one can’t purchase a product from their online store without also becoming a member. The two go hand in hand.

One may decide to purchase a non-recognised tag/device to circumvent membership fees, but it is also needs to recognise that these may not be recognised or responded to by the medical profession.

3 Likes

Indeed. Each individual will make a decision, based on their own knowledge and circumstances.

My background is in IT and administration. I’ve been watching the electronic health records project from early days. In my opinion, the project is a failure. Our government can’t afford it to be seen as such. That’s why they’ve had to take the system opt-out. It’s a sign of failure.

That’s a big IF. Most medical-alert bracelets are bought from places like eBay or a pharmacy, with the buyer getting them appropriately engraved. In an emergency, the physical record on your wrist is more likely to save your life than any linked electronic record.

It would be a brave or foolish health professional who would take that legal risk.

4 Likes

If it is not found eventhough on one body because it is not a common one or looks like a piece of jewellery, the information from this website may be of interest:

It could be argued that it has been moderately successful as a significant proportion of the population already was part of the existing health record system. It could also be argued that it may be in one’s interests for one’s medical history to be available to medical personnel at the time of treatment, to ensure that the best and most effective treatment for that individual, when their medical history is known. Such may not be possible when history is not known.

Many also were not aware of the previous health record system and possibly had not chosen to opt-in as a result.

While the opt-out is possibly not a best practice approach, it would be seen that it forces one to make a decision based on what one believes is in one own interests. An opt-in approach requires a lot of resources to mount a communications/media campaign to educate the community on the advantages or disadvantages of such a system. Such campaigns are also not effective in capturing everyone who think it is in their interests to opt-in to the program. This increases the risks to those who possibly should have opted in voluntarily.

I can see why the government took this approach, but can also see what this approach is also seen as heavy handed forcing one to make a decision.

3 Likes

That leads to an interesting point – what liability is there is to check for MyHealthRecords and find what one is looking for IF it is there; and for those who opt-in, what liability is there for the medical community to keep it up to date and accurate with the pressures of the medicare reimbursements squeeze?

4 Likes

So are you saying the opt-out approach means the Govt doesn’t have to educate the community?
Regardless of the situation, if the Govt want the people to do something that may or may not encroach on their rights then I think it’s important they communicate this.

4 Likes

Thanks for the discussion so far everyone, we’re listening closely to how consumers feel about My Health Record. We’ve also asked some healthcare and digital security experts for their opinion, and put together some information that shows you how to manage your record.

5 Likes

The Shovel nails it :smiley:

http://www.theshovel.com.au/2018/07/24/health-minister-assures-local-man-that-the-my-health-record-system-is-secure-and-wishes-him-well-for-his-upcoming-genital-herpes-treatment/?wp-nocache=true

6 Likes

ABC News just had an item about how the Government is now trying to cut down on how other Apps are able to use and access the MyHealth record…now they are trying?? This should have been forseen and addressed long ago…yeah a system you can trust so much that a Liberal Parliamentarian backs out of using it citing his concerns over the “Opt Out” now being used. More concerned organisations are saying the system isn’t good and that it needs fixing eg the Human Rights Commission.

3 Likes

The Human Rights Commissioner (and team) has also put out a discussion paper called “Human Rights and Technology Issues Paper”.


Apart from the exciting name, the paper has 3 stages:
July 2018
Issues Paper: Background and questions - Phase 1 consultation with key stakeholders
Early 2019
Discussion Paper: Proposed roadmap for responsible innovation - Phase 2 consultation with key stakeholders
2019-2020
Final Report: Conclusions and final recommendations - Implementation of proposed approach

So 2019-2020 we should have some conclusions but we have until 15 October this year to opt-out :grimacing:

5 Likes

My chief concern - founded on self-confessed ignorance of the details - is the PM’s assertion that insurance companies might well be given access to the data…but that we should trust them to use the data fairly and that they already expect us to confess our health misfortunes up-front in any case.
I have two responses to that:

  1. The Banking Royal Commission…hello!?
    Is the PM seriously suggesting that the health insurance industry is less criminal than our financial institutions?
  2. Mental health insurance: the industry already treats mental health problems as a pesky nuisance and expends great energy in avoiding any liability. Are we seriously expecting that provision of even more leverage (via information from a centralised database) is going to make them more sympathetic? Hardly!

Particularly with this latter matter, I am astonished at the PM’s naivety. It’s getting on for Trump-like proportions (and THAT’s saying something). Really, somebody needs to brief the PM more carefully so he doesn’t make a fool of himself.

3 Likes

It is a bit misleading to say that one government department is “far more attractive” - because that could be construed as saying that hackers will compare the relative weakness / attractiveness of each department and only attack the weakest / most attractive one. In reality the weaknesses in each government department combine together to make a single risk that is greater than all of the individual risks.

(That is without even considering silly people who reuse passwords across government departments - so that a weak, successfully penetrated department becomes an entree into stronger departments. myGov is designed to replace the risk of password reuse by making the hacker’s job easier and centralising it all in one place. You can mitigate that risk by having more than one myGov account.)

Additionally I think this ignores the sensitivity of health information. It may indeed be less valuable to a hacker, but it may be more distressing to the person whose privacy has been breached. Health information may be targeted for blackmail - threat of release (a bit like the reverse of ransomware) - rather than outright identity theft.

At the end of the day, each person should weigh up the benefit against the risk - which is why this should always have been opt in. As an opt out system, most people will not have the opportunity to weigh up the benefit and the risk - as it would seem that the government is not going to advise all affected people that they have a choice to make.

2 Likes

Systems fail. Complex systems tend to fail more readily. A wrist-band is a simple system. Potential failure modes of the MyHealthRecord system are many and varied.

In an emergency, the system might be down or inaccessible. Necessary information might not be in the system (it’s only a time-dependent summary, after all). If the system is operational, accessible and holds the necessary information, emergency personnel might not be able to find it. If the system is operational, accessible, holds the necessary information and emergency personnel can find it, then it might not be in a usable form. These are not ‘what ifs’. They are observed shortcomings of the system you advocate so strongly.

To be clear, I see the value in a competent health records system. That’s not MyHealthRecord.

From the start, the system was intended to be cheap. It’s being promoted now on the basis of other benefits, but MyHealthRecord doesn’t deliver those benefits.

It could be argued - falsely. For a start, there was no “existing health record system”. The current government tweaked the Personally Controlled Electronic Health Record (probably to make it even cheaper) and changed the name, but it’s still the one system. Given the incentives provided to practitioners to sign people up (typically tens of thousands of dollars per quarter, IIRC), uptake was mediocre, at best. That’s why they had to make it opt-out.

An example of the poor quality of work associated with the system from the beginning:

When even the rats are deserting, there’s probably something seriously amiss:

3 Likes

For additional example, I wonder about an ambulance attending a motor vehicle accident in a rural location that has no mobile phone network coverage (yes, there are many such locations). Are all ambulances to be fitted with satphones? I suspect not.

2 Likes