People trying to opt-out of My Health Record find they already have one

Once created can't delete, only ‘deactivate’

A number of Australians attempting to opt-out of having a My Health Record automatically created for them are reporting that a record already exists in their name without them knowing.

Today marks the first day of the three month opt-out period, during which individuals can stop a My Health Record being automatically created for them.

After the end of the opt-out window, which ends on October 15, a My Health Record will be created but can’t be deleted, only cancelled.

Cancelling the record means it is made “unavailable”, meaning healthcare providers cannot access it or upload documents to it. It is, however, kept for 30 years after and individual’s death or, if the date of death is unknown, for 130 years after their date of your birth.

After following the online opt-out process on the My Health record website, a number of individuals report finding a record already exists in their name.

“WTF? Today is the first day one can opt out. Finally got onto the website to discover I already have a record. There is no way to delete this data. I have no idea what it even is. They will keep it and can share it without a warrant,” wrote Dr James Farrow on Twitter this morning.

“Instead of doing productive things today I’m going to have to spend ages on hold to an underfunded and badly run Government service to cancel something (note: not delete) I never gave permission to be created in the first place,” he later added.

Another Twitter user had a similar experience, saying they had received a message that a record “was already created without my consent. Data can't be deleted now, only deactivated”.

In reply, another user said: “Me too...what the hell is going on...somebody??”

The Australian Digital Health Agency – the system operator of the My Health Record – told Computerworld that the individual's may have forgotten they had created a record.

"My Health Record has been around for six years, initially called Personally Controlled Electronic Health Record (PCEHR). With various forms of enrolment, it may be the consumer has previously registered for a MHR or PCEHR with their family GP or a Medicare office and do not recall doing so," a ADHA spokesperson said.

The individuals were referred to a hotline and reported wait times in excess of two hours.

"There has been great interest in My Health Record today. The Agency anticipated higher call volumes today, and as a result had more staff on standby to respond to enquiries," the spokesperson added.

The opt-out approach was announced last year after the Department of Health deemed opt-in approaches “unsustainable”.

Trials of the approach were announced to run in far north Queensland and in the Nepean Blue Mountains region – areas covering a million people – in NSW in late 2015. Those trials were staged in the wake of a 2013 review of the system – originally named the Personally Controlled Electronic Health Record (PCEHR) — that concluded the system should shift to an opt-out approach.

More than 970,000 records were created as part of the trials. Some 80,444 e-health records were created in two areas in Victoria and Western Australia where “innovative opt-in” methods were trialed to see their impact on uptake of the system.

It is not believed those that reported unexpectedly already having a My Health Record were involved in those trials.

As of today, more than 5.9 million Australians have a My Health Record and 12,860 healthcare professional organisations – including general practices, hospitals, pharmacies, diagnostic imaging and pathology practices – are able to access them.

Updated 18:20 to include ADHA spokesperson response.

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