It’s not just the My Health Record we should be concerned about

It’s often been said, the Australian My Health Record is not a finished project. It is evolving and has, indeed, lots of potential to improve and streamline patient care. Sadly, the privacy issues that have haunted the project for years still seem to be unresolved. And when it comes to secondary use of patient data, there’s more to come from a different direction.

Back in 2013 I wrote this in a blog post about the My Health Record, then called the Personally Controlled Electronic Health Record or PCEHR:

“The PCEHR Act 2012 states that the data in the PCEHR can be used for law enforcement purposes, indemnity insurance purposes for health care providers, research, public health purposes and ‘other purposes authorised by law’. This is far from reassuring. There are many grey areas and unanswered questions. There are too many agendas. The PCEHR should first be a useful clinical tool to improve patient care.”

Five years later and there are still ambiguities about when, how and for what reason law enforcement agencies and other non-medical parties can access the national My Health Record system. This should have been crystal clear by now. Here’s is what I posted in 2015:

“(…) at the moment the information in the PCEHR may be used by the Government for data mining, law enforcement purposes and ‘other purposes authorised by law’, for up to 130 years, even after a patient or provider has opted out. (…) The legal framework should be reviewed, and any changes must be agreed upon by consumers and clinicians.”

When asked about this issue at yesterday’s Press Club AMA president Dr Tony Bartone indicated that he is prepared to push for legislative amendments to improve the confidence of Australians in the My Health Record.

I was glad to hear this. I’m all for amendments of the My Health Record legislation but at the same time the Department of Health is on a journey to get its hands on GP patient data – and this is unlikely to change.

For example, the Department of Health is preparing a new data extraction scheme, to be introduced in May 2019. To remain eligible for practice incentive payments GP clinics have to agree that de-identified patient data will be extracted from their clinical software by, perhaps, Primary Health Networks. From there the data may flow to, possibly, the Australian Institute of Health and Welfare, the organisation responsible for the secondary use of data in the My Health Record.

If this scheme goes ahead, government organisations will begin to take over data and quality control of general practice. The argument will be that it is in the interest of the health of the nation. Perhaps it’s my well-worn tin foil hat, but I have a sneaking suspicion what I will be blogging about in the years to come.

6 thoughts on “It’s not just the My Health Record we should be concerned about

  • Reblogged this on Dr Thinus' musings and commented:

    Dr Kruys highlights another big data grab by the Department of health and this time patients will be blissfully unaware. The only people taking note of these changes are the Practice Owners who will be facing a big financial setback if they decline to contribute to the new data extraction scheme.
    And when you have bills to pay, wages to look after and mouths to feed ethics sometimes get a bit blurry and you fold under the relentless pressure to share ALL of your data – not just those of patients who have opted in or out of the MHR.

    Ostensibly it is de-identified data sent the local PHN – which is supposedly not part of the Governmental structures. Yeah right. Watch this space


  • Fully agree Edwin. However the PIP has forever been used by the DoH to lead general practice down a certain path. If they want a particular outcome they incentivise through the PIP. Data is just the next thing on the list that they want.
    Unfortunately until General Practice as a whole stands back and says “No” and we are prepared to put our money where the ideals are and not take the incentive payments will this change.

    A great example of this was the My Health Record. You and others refused to accept the Incentives to try and make positive change to the system. And while the stance was noticed it was not enough because we did not come together as an industry and say no.


I'd love to hear from you! Please leave a comment:

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.