Today marks the first day of the three-month “Opt Out” period for My Health Record, the government’s digital database of personal medical records. This article by Dr James Freeman discusses why you should care.

If you’re the sort of person who’s never had a parking ticket and has a similarly unremarkable medical history then you can almost certainly ignore this. On the other hand, if you are one of the one in three of women who have had a termination of pregnancy in their lifetime, or last year you were among the one in five people who had a mental health issue, or among the 125,000 people treated for an alcohol or drug problem, you need to read this.

The simple reality is there are many medical issues most people would regard as private and confidential that are about to become visible to any entity that can access the MyHR.

So let’s take a quick trip back down memory lane. Back in 2011, I set up GP2U Telehealth which has grown to deliver over 20 per cent of all the online psychiatry in Australia. As part of that, one of the first thing I did was set up a now rather neglected Twitter account. I was really proud of what we were doing but somewhat taken aback that the commentary on Twitter largely related to “What are you doing to protect privacy?” rather than “Hey, that’s a really good way to give people in remote areas access to care”.

As a doctor, patient notes have always “just been there” but this feedback from Twitter got me thinking about the issues relating to privacy when it comes to eHealth records. Back then the MyHR was called the PCeHR and I wrote a somewhat scathing commentary about it under the title “How to fix the PCeHR and save eHealth“.

And the clinically useful data I hoped to see, like like atomic pathology results … sadly, that’s not there

To the government’s credit, many of these issues have been addressed, but I’d like to draw your attention to Step 5 – fixing the fundamental problem – which is this. Having put a whole lot of sensitive information into an eHealth record how do you control access to it? The upshot is that only you, the patient, can really determine that, and once again, to their credit, the government has provided you with the facility to do just that.

So as a bit of an eHealth geek I was one of a relatively scant group that signed up voluntarily for a PCeHR. Doing that involved navigating the rather diabolical process of getting a My.gov account and having done this I was a little sad to see my record was entirely blank. I confess to largely losing interest at that point but with the upcoming “opt out or you’re in” I decided to revisit it.

So having logged into my My.gov account and hooked it up to the MyHR I found my record now contained a whole lot of things. Every medication I’ve ever been prescribed; hmm, two lots of Augmentin – check. Anastrozole … probably not mine given I don’t have breast cancer and never have.

Okay, so down in consultations. OMG, it’s clearly revealed I’ve had work. No, not botox or fillers – a somewhat innocuous laser removal of a lesion but nonetheless there it is. A couple of consults for eye tests to get new specs – check. A telescope up the back passage to check for cancer (happily not found) but it made me feel distinctly uncomfortable.

My discomfort came from imagining this record belonged to one of the many mental health patients I treat or perhaps more tellingly the patients I see seeking help for alcoholism who have found out I prescribe naltrexone. It’s hard to imagine many of them being thrilled the previously private government data is now (or shortly to be) available to every doctor in the country and then some.

And the clinically useful data I hoped to see, like like atomic pathology results that would show how a patient’s blood results have been tracking over time; sadly, that’s not there and apparently it’s not on the roadmap either. The only way to find a result is to painstakingly sift through what amounts to scanned PDF copies of all the pathology results a patient has ever had.

All up it seems like a pretty large loss of privacy for a negligible gain in utility.

The Gilead and the taxpayer Odyssey