As tens of thousands of Australians rush to opt out of the government’s centralised My Health Record system, many are discovering that, unbeknownst to them, one already exists for them.
And while we’re always watchful about privacy and surveillance here at Crikey, there’s actually nothing sinister about this. A lot of people — nearly six million of us, according to the government — already have a record. Some people have one because they linked their Medicare card to another IT initiative of the government (and one with its own problems), MyGov. Or, at some point in an interaction with the health system — your doctor, or at a health provider or hospital — you might have filled out a form that meant clinical information was provided for your health record. There was also an opt-out trial in NSW and Queensland in 2016 when participants should have been told about the trial and allowed to opt out then.
So any creation of a record should have been made clear at the time and your consent gained or an offer made to opt out. But how many of us read in detail every form we fill out during out interactions with doctors and nurses? Or read every letter that arrives in our mailbox? Or you may have simply forgotten.
So if you attempt to opt out and find you have one, you can fix that. In fact, My Health Record, which deserves criticism for its overall opt-out process and the information campaign associated with it (basically, flying under the radar so people wouldn’t opt out en masse), has a very good page on its site with clear instructions about what to do. It explains why you might have a health record here, and it explains how to cancel your record here. You can do it online. You can reverse your decision later, or you can opt in again later if you decide to opt out.
Bear in mind, though, that even though your record is cancelled, the data already uploaded to your record will be kept for 30 years after your death. Access to that data will be extremely limited — it can be handed over if required by law, but otherwise health practitioners can’t access it, and if you want to see it, you have to apply to get a copy. Nor can it be added to by health practitioners. Otherwise it will sit on the system, protected by the My Health Record security measures — bear in mind the primary security risk to My Health Records comes from the thousands of points of access to open records via the health system; this will not apply to records of cancelled accounts.
as Asher Wolf has already commented, “opting-out” should mean exactly what it says, so that all previous documentation for those who have already acquired an account (many unknowingly) should be expunged, wiped, exfiltrated, dead parroted.
The system design is faulty, misleading, and reeking of malign intent from the start. It should be pulled down and re-started with a straight-forward and single “opt-in” choice.
But this is not really all about collecting medical data for improving health outcomes. GPs have been gulled. This is about the stealth creation of giant database that can be flogged off to the private sector to further control our consumer choices and rip every last cent out of our pockets. As an added insult, the Government gets to use it against us too. No wonder sex workers are alarmed. And what about women who have had abortions, or who are hiding from violent spouses etc? What a nightmare.
Its got bugger all to do with improving health. It will be incomplete and patchy, which critically impacts its efficacy in matching records for emergencies, at the very least.
That bloke in charge, Tim Kelsey, is a former Murdoch journalist, who does not believe we own our medical data, who tried to flog off a similar UK database with disastrous consequences, and thinks of us as “consumers” not patients, and dumb ones at that
Damn right!!*****
I went to my doctor yesterday, after the consult, he said do you want me to send the consult to the government? Immediately I had to take my angina pill , after my BP rose to alarming heights. He smiled said don’t worry just tell the receptionist. After giving her my drivers licence and medicare card she quickly opted me out online after processing my receipt. She said the practice had bookmarked the online site and they do it routinely for their patients as that practice will not upload any records as that is between the doctor and patient. the practice policy is anyone who wants their records uploaded can get a printout under the Privacy Act and do it themselves [if they are stupid enough].
Just to add that–regarding the ‘Opt-out’ instructions provided in the article–I logged into myGov and carried out the procedure… but the button stated as being ‘Profile and Settings’ is just ‘Settings’. And that stated as being ‘Cancel My Health Record’ is actually ‘Close My Health Record’. Portents of their future attention to detail?
I checked my records to find that although I was born in England, I am recorded as being Aboriginal. I can only assume that my great, great grandma, the cricketing groupy, met the first Australian cricket team to visit England, who were all aboriginal – You live and learn.