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My Health Record is the latest brand name for the Australian government-controlled online copy of parts of your health information.
We have put together a concise
summary of My Health Record. For details, and lots of background,
read on.
From 2012 until 2015 it was called the 'Personally-Controlled
Electronic Health Record' (PCEHR). Few people took up a PCEHR
voluntarily, perhaps unconvinced of its benefits or its
trustworthiness. So the 'new' My Health Record is soon being pushed
onto you: unless you opt-out you'll
get one, like it or not.
A My Health Record is not your real health record: you do not own it or
control it, and it's not a clinical health record your doctor or
hospital can rely on. My Health Record is a secondary system hosted by
the Federal government containing copies of information about you,
obtained from
many sources. But it is not complete, accurate, or up-to-date enough
for doctors to use where healthcare is delivered.
In fact the government says that it is not to be relied upon for
clinical use - that's what local electronic Medical Record systems are
for. The My Health Record system is a personal aid
to be used by individuals in managing their healthcare. A more
detailed overview of the My Health Record is available here.
The Australian Privacy Foundation recognises that electronic
records carefully designed to support clinicians can assist with
healthcare.
These record systems need to enable health professionals to make better
decisions, be intuitive to use, be adaptable and in no way make their
jobs harder than they are already.
Unfortunately, simplistic IT solutions that gather large amounts of
raw, un-managed patient data, which can be matched with other data
sources, which are onerous to use, and which are easily accessible over
the internet can create far more insidious problems than they solve. In
our opinion the My Health Record falls into all these categories.
Furthermore, the gung-ho attitude of technology specialists and the
politically driven decision to make the My Health Record opt-out means
that patient trust, patient choice and patient care are being put at
major risk.
The risks to your privacy, confidentiality and information security
need to be balanced by the value of any of your health records. In our
assessment, because it is not really your health record but a
less-reliable copy, the My Health Record has little value for either
your clinicians or you as a patient: you both need the real thing. This
means the risks to you may be high enough to question whether My Health
Record is worth it.
Most clinicians already use an electronic medical record system. These
can be
improved by better communication between existing systems, not by
introducing another, less useful, less secure copy in a system that has
some of the hallmarks of a scheme designed for surveillance and
less-controlled disclosure, rather than your healthcare.
The government should take a long hard look at the reality of the My
Health Record and realise that opt-out is not a good idea. It should
certainly not try and move the health data of the whole Australian
population into it such a poorly designed and risky system.
This site explains why we have reached these conclusion.
When you should consider Opting-Out
APF Submissions and Associated Correspondence on Health Records
We are currently running a campaign to let people know just what the government is doing with your health information and the risks they are taking with that information.
This will allow you to make an informed decision about opting out from the system and what it means if you don't.
Follow @APF_Oz on Twitter
This is a link to a page with images we have used in some of our tweets.
The goal of the campaign is: to make the Federal Government realise
that it should not be in the
business of creating and maintaining a health record system with
details on every Australian and attaching it to the internet.
This is because:
The only realistic and acceptable role for the Federal Government is in facilitating the secure and reliable exchange of health information between healthcare providers.
At a minimum, the government should leave the system as opt-in.
Australian can then make up their own minds about the usefulness and
risks of the system. It is preferable that the Federal government plays
no part in gathering, storing or mining Australian health data.
A short overview of the My Health Record is available
here and this discusses the value
of the system
See this page for detailed information from the APF about the My Health Record and how the government is making many unfounded and untrue claims about the My Health Record
Here is the government's website for My Health
Record, One of the most important, and one might say one of the
best hidden, pages is the Privacy Policy.
It's right at the very bottom, in a very small font, almost as though
they don't want you to see it, and has a wealth of information on your
health data. Things like you cannot de-register, only de-activate your
My Health Record. You cannot delete or cancel your My Health Record, it
will
always be there for government agencies to request access to, until 30
years after you die, or 130 years if they don't know if you've died.
It contains much more information than a Privacy Policy would be
expected to have. Fully expanded, it is about 25 pages long and is over
10,000 words.
One of the most informative sections is "I am getting a My Health
Record or I am a representative" which is also down towards the bottom.
Read it and make up your own mind.
The My Health Record system (previously the Personally Controlled eHealth record) is a mash-up of some of your health data.
The government claims it is to help people manage their healthcare
- a Patient Health Record - but it contains far more data than you
would expect in a patient oriented system. It contains
Medicare, PBS and
other data, some from you, some from your GP and some from
hospitals where you have been treated.
According to the Government it is not to be used as a primary healthcare record, and that you can control who can access your health data. In fact you cannot control who can see it (only what organisations can see it), you cannot find out who looked at it and once data from your record has been downloaded into a health professional’s system, you have no control over it in terms of what is in it, who can see it or correct it if it is wrong.
Any health professional who has access to it can see all of it.
It is not organised in such a way that facilitates good decision making. It is just a dump of documents (many if not most, unsearchable). A health professional needs to look through all your data looking through much irrelevant information in order to identify something that may be of interest. It is asserted by health professionals that much of the data in your health record could be out-of date, incorrect if taken out of context, misleading and incomplete.
All of these matters can result in poor health decision making. And it's a threat to your privacy
When designed, it was intended to be opt-in. i.e. if you wanted one you could have one. When you requested a PCEHR you nominated a Healthcare Provider – usually your GP, a contact phone number and email address.
Now it is being made opt-out. This doesn't mean that if you opt-out you won’t have one, it means that you will have one, like everyone else, you just won’t be able to access it. If you don’t opt-out, your record will exist, but there will be no way to correct it, add to it, or specify contact details unless you actively engage with the system.
What is it for?
The government tells you that the My Health Record should not be relied on for clinical use. So what is it for? Every Australian will have one, even if they try to opt-out. The opt-out only applies to registration, not the existence of the record.
If you look at the legislation that governs this system you find section 70.
This allows the government, with no warrants, no oversights no reporting to parliament to share your health and medical data with law enforcement and revenue protection agencies. The full scope of these is unclear. The legislation does not specify Federal agencies so one must assume that it includes state and territory agencies.
It also does not specify purpose, so the data could be mined for suspicious drug use; healthcare practices.
The only conclusion is that the My Health Record system has been designed for governments as yet another way to monitor and investigate normal behaviour of its citizens looking for suspicious activities.
If it looks like a surveillance system; if it acts like a
surveillance system; if it can be used as a surveillance system, then
that’s what it is - a surveillance system.
This site contains information about the My Health Record. most of which the government isn't telling you or which they are carefully being misleading.
The government is giving every impression of only being interested in getting its registration numbers up so it can claim it is a success. It is not concerned with the My Health Record being useful or being given to people who should really think carefully before allowing their details to be included.
Nowhere does it discuss reasons why you may be better off not having
one, or at least why you should think about not having one.
Here are some reason why you should think twice about becoming involved:
If you wish to opt out of the trial, go to the government's My Health Record site
Pseudonym
The government is not
publicising this
but it is available. You have to
get a pseudonym IHI from the Department of Human Service.
Details are
available on the government's website. This is a link to the form you need to fill
in
Control what is in the record
Register yourself for a My Health Record, go and see your GP and between you arrange to empty out the record of all except the data you want to remain visible.
You might want a simple Health Summary with basic but minimal information. That way you wouldn't draw attention to yourself as wanting to opt-out and you would know what might go to the various bodies entitled to see data from your record.
Create and Carry your own Health Record
Why rely on government run technology with its dangerous privacy risks? All you have to do is write your own, or get your GP to do it for you.
For your GP to do it is probably no more effort than it would be to
upload it to My Health Record, except it would have the added
advantages of being highly focussed, it wouldn't have all the
extraneous data that clutters up the government's database and there
would be no risk of other documents being included to confuse
health specialists who need to assimilate the data quickly.
It would also mean that, unlike
My Health Record,
you do actually have full access control. If you are concerned that
some information is private, you can have different documents for
different purposes.
You can carry a printed copy; put it on a memory stick along with a password; include details of how to get hold of the password in an emergency andhang the memory stick around your neck; if you are into high tech, you can encrypt it and put it in a cloud somewhere.; your family and/or partner can have a copy.
There is no need for the nanny state to be involved at all in
collecting and making use of your health data.
Australian Privacy Foundation
Other Resources
Australian Government Resources
Legislation
Technical Information
My Health Record information pages on this site
A short, concise summary of My Health Record
Information about My Health Record
The My Health Record Call Centre
Information on other sites about Health Records and Data Hacking
What doctors think about My Health Record
Setting the Government Straight
Dr Bernard Robertson-Dunn
Chair Health Committee
Australian Privacy Foundation
Bernard.Robertson-Dunn@privacy.org.au
Mobile 0411 157 113
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Created: 4 March 2016 - Last Amended: 22 February 2017 by Bernard Robertson-Dunn - Site Last Verified: 24 January 2005
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