I’ve just been catching up on the latest news around the MyHealth Shared Care Health record being rolled out in Australia.

Some key points: MyHealth started out as another project called PCEHR (pron. PECKER), a project to create a national electronic health record for Australian citizens, with complete health data collected by the Govt’s Department of Human Services as an amalgam of all the GP, Hospital, Medicare and Pharmacy records found for a given individual. The Australian Govt spent over AU$60million to create PCEHR, and when less than one percent of the population ‘opted in’ they decided that they needed to justify and create value in their investment… so for an additional AU$8million it’s name was changed to MyHealth (yes… incomprehensibly, the name change REALLY cost that much). And in order to ensure that as many citizens as possible ended up with their health data stored in this expensive govt datacentre, available to be explored and data mined by a large range of organisations, and handed out to police who may request access without a warrant… the legislation was changed from Opt In to Opt Out.

During 2012-2014 the Govt ran the first pilot of the Opt Out process in parts of North-West Sydney (Richmond and the Blue Mountains). During this Opt Out pilot 900,000 people Opted OUT, and only 300,000 people Opted IN.

So that tells us already that ¾ of people who are AWARE of the MyHealth record DON’T WANT IT. But have the Govt. listened?

No.

The govt claims that the 6million records they created during the pilot are all because people “allowed it” or “opted in”.

No… not quite…

They are records of people that were created automatically (including records initially created for the 900,000 who opted out), and almost all have NEVER BEEN ACCESSED – meaning the subject patient in all likelihood doesn’t even know they were automatically enrolled into MyHealth.

Next month the Australian Govt plans to automatically create 17million more records. Again, by claiming that because people who very probably don’t know about the system haven’t opted out, it signals implicit consent.

Unfortunately that is NOT how bioethics and consent law works. Consent must be given freely and only after you are found to be (a) competent and (b) fully aware of what is going to happen, and (c) any and all potential consequences.

An example of how the MyHealth record is going to change the healthcare and treatment habits for the negative comes when we see that sexual health clinics for teenagers in some states are shutting down. This, primarily because the teenagers themselves whilst being considered Gillick competent (a legal term) to consent to treatment, are not deemed capable of opting out of having a MyHealth record created (not even a 17 year old) by the same law. This means that their parents and other doctors treating them for unrelated conditions (for example a broken toe sustained while playing hockey), who would not otherwise have been legally able to access unrelated treatment records, can now access 17 year old Mary’s MyHealth record and see when she had a contraceptive mishap and approached the sexual health clinic for the morning after pill or treatment for a suspected STD/STI.

The Australian MyHealth record is a prime example of why we must be very VERY careful when creating shared care records. While shared care digital records are the basis for any Learning Health System, and can improve the safety, efficacy and outcomes of treatment, systems that opt people in without adequately achieving true informed consent can actually lead to significant privacy invasion and harm.