My Health Record


My Health Record: what is it, and why should I care?

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 health care.

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.


Table of Contents

Campaign

Campaign Goal

About My Health Record

When you should consider Opting-Out

Alternatives to Opting-Out

Media Releases

APF Submissions and Associated Correspondence on Health Records

Resources

Links to other pages

Contacts


Campaign

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. 

Campaign Goal

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 delivery of primary healthcare is the responsibility of the states;
  • the My Health Record is an invasion of privacy;
  • the My Health Record is risky and insecure;
  • the information in it is not well managed;
  • the information is not provided in useful ways for either clinicians or patient to access; and
  • as a health record system My Health Record is ineffective and of virtually zero clinical benefit.

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.


About My Health Record.

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 30years 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 over10,000 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.

What is My Health Record?

The My Health Record system (previously the Personally Controlled eHealth record) is a mash-up of some of your health data. In reality, it contains information about your treatment in the health system, not your health in general.

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.

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 in your past treatments 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.


When you should consider Opting-Out

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:

  1. If you have a medical condition that can lead to discrimination (STI, AIDS, Depression / Mental Illness, Diabetes etc);
  2. Where you wish to keep your contact details confidential.This might be from someone who might do you harm if they know where you live. e.g. an abusive partner, someone subject to an AVO etc.It could also be because of your employment – a policeman/woman a government official etc;
  3. If you have, or have had, a medical condition that could cause embarrassment;
  4. If you are being treated for an addiction that might cause law enforcement agencies to investigate you.
  5. If you are a public figure and do not want your health and/or personal details made available;
  6. If there is a risk that an insurance company may wish to obtain your complete medical history;
  7. Where you feel you cannot properly manage your health record because of age, ability or economic circumstances; and
  8. If you believe that the government may link your health data,your census data and/or your telecommunication meta data.

If you wish to opt out of the trial, go to the government’s My Health Record site


Alternatives to Opting-Out

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 focused, 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 and hang 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 using making your health data.


Media Releases


APF Submissions and Associated Correspondence on Health Records


Resources

Australian Privacy Foundation

Other Resources

Australian Government Resources

Legislation

Technical Information

  • PCeHR Concept of Operations.
    Final. September 2011
    Describes how the system is supposed to work. Has been removed from the Australian Digital Health Agency website. The link is to a cached copy.
    Never been updated
  • PCEHR System Architecture v1.35
    Released 10-11-2011
    Document says “It will be updated to reflect the PCEHR design developed by the National Infrastructure Partner.” Never been updated.

Contacts

Dr Bernard Robertson-Dunn
Chair Health Committee
Australian Privacy Foundation
Bernard.Robertson-Dunn@privacy.org.au
Mobile 0411 157 113