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.