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.