My Health Record

What we think of My Health Record

The Australian Privacy Foundation recognises that electronic records, carefully designed and implemented 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, potentially by hackers, 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 your health records to you and your health care providers. 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.

It is not generally known but the government has several mechanisms by which they they pay GPs to upload your health data. In other words, GPs are selling your health data to the government. They do this at the expense of time available to attend to your needs you during consultations.  Just watch your GP next time you see them and observe how much time they spend with their eyes on their computer screen and not you. Do you feel like a patient or a product being sold?

This is how you opt-out of My Health Record.

  1. Instructions from govt website and links, when available, probably 16 July

The legal basis of My Health Record

It may be surprising to some that, in Australia at least, there is no fundamental right to privacy. There are laws that protect aspects of your confidential information, including the Privacy Act 1988 (Cth) and associated Privacy Principles, that impose sanctions on those who fail to properly deal with private data. Common law remedies also exist in theory, however there is no readily accessible statutory cause of action that allows a privacy breach victim to claim their emotional distress and other damages. This gap in our law was the subject of a 2014 Australian Law Reform Commission Report, to which the Australian government has never formally responded.

Instead, since late February 2018 we now have a mandatory requirement for various entities including government and larger businesses, to report breaches of privacy. If your data is compromised (accessed by those who are not authorised), you must be notified and suggestions offered on ways to mitigate any impact. If your credit card details are leaked, for example, a suggestion might be to cancel those cards to prevent unauthorised use.

Under this new law, you will know exactly when your privacy was compromised. Cold comfort perhaps, however the intent is that a process of reporting will ultimately lead to better protections.

Of course, not all private information is the same. It is hard to imagine what should be done to mitigate the impact of a breach of personal medical information. Once disclosed, such information cannot simply be cancelled – it remains true, sensitive and open to abuse no matter what is done in response.

One thing is clear: the law is not able to physically protect your private information. It can only respond to breaches that have already occurred. Allowing your private information to exist outside of your direct personal control then becomes a question of risk versus benefit.”

For more information about the legal issues of My Health Record see here: The law and My Health Record


Why you might 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.

Links to resources that you may use to decide if you wish to opt-out

The government is only giving you one side of My Health Record – what they think the benefits are. Have a look at what they tell you about the costs, risks and potential disadvantages to minority communities in Australia. Can you find anything? No. There isn’t anything.

To help you make an informed choice, here is more information to balance out the government’s spin.

  1. A summary of My Health Record
  2. For Sale – Your Privacy and Your Health Data
  3. The law and My Health Record
  4. The truth about My Health Record
  5. My Health Record: on a path to nowhere?
  6. My Health Record an ‘abuse of trust’ 
  7. Privacy in digital health: Matters of trust in a scandal-plagued era
  8. ‘You can’t undo that damage’: How safe is your health data?
  9. Important Overview Of The Pros, Cons And Questions About My Health Record
  10. Positive Life NSW (an HIV support group) PLHIV & My Health Record

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