http://www.abc.net.au/news/science/2018 ... n/10000008Australians have until October 15, 2018 to tell the Government they do not want a My Health Record — an online summary of their healthcare information.
The project aims to give users greater access to documents about their health and increase communication between doctors.
But some people have tried to opt out due to privacy concerns, only to discover they already have a health record set up.
Almost 6 million Australians currently hold a My Health Record, according to the Australian Digital Health Agency (ADHA).
Wes Mountain in Melbourne said he tried to opt out of My Health Record on Monday, but the system told him he already had a record.
He is certain he never actively created a My Health Record, but when he logged in, he found several prescription documents were already uploaded.
When examining the access log, he found the first action taken on his account was a document added by an external provider — DHS Medicare Repository Services — in late June.
The first time he had ever personally accessed the record was on Monday, according to the access log shown to the ABC.
He plans on contacting the ADHA to try and figure out what happened, and see if his record can be deleted.
The ADHA is required to hold My Heath Record information (although it will be largely inaccessible) for 30 years after your death.
Old records could be pulling in data
The My Health Record was once called the Personally Controlled Electronic Health Record (PCEHR).
"Some people may have forgotten that they have one and not known that the name of the record has since changed," an ADHA spokesperson said.
Jamie in Sydney, who didn't want to be identified, told the ABC she logged into the government services platform MyGov on Monday to find a My Health Record had pulled in data as far back as 2011.
She can't remember starting a record, but the record's online access log shows she created it in 2015.
She has a vague recollection that she may have created the record when setting up MyGov and linked Medicare services.
"But it was so long ago that it wasn't anything well described, and I had no idea it was collecting all this data in the meantime," she said.
All told, she said her record contained around 200 documents.
"That includes prescription data, basically every appointment that's gone through my Medicare card," she said.
When users first access the current My Health Record system, they are asked whether they want two years of Medicare Benefits Schedule or Pharmaceutical Benefits Scheme data to be uploaded, among other documents.
But if a doctor accesses the record first before a selection is made, this data uploads automatically.
My Health Record could exist as far back as 2012
Leanne Wells is head of Consumers Health Forum of Australia, which broadly supports My Health Record for its convenience and clinical benefits to patients and doctors.
The program was opt in before it switched to opt out this year, she explained, and people could have been signed up as long ago as 2012.
She recalled there were recruitment campaigns in hospitals, for example, where people were encouraged to join.
"I think the communication was probably quite variable then in terms of exactly what people were signing up for," she said.
"People in those circumstances just need fairly timely confirmation from the Government and the [ADHA] about exactly what their status is."
Jamie decided to cancel her record, but was unhappy to discover her documents would still be stored by the system operator.
Have you set up your record? Share your story and email Specialist.Team@abc.net.au
She said she would rather have opted out.
"I have had a semi-complicated medical history, with doctors that have previously misdiagnosed, or made assumptions, that have later proved to be incorrect by other doctors," Jamie explained.
"If any of those doctors decided to upload my file ... the implications for that [would have been] huge."
Records created in trial zones
Michael Davidson said he spent hours on the phone trying to understand why he had a My Health Record. (Screenshot: Michael Davidson)
It appears at least one person may have been registered for a My Health Record during opt-out trials without their knowledge.
In 2016, the Department of Health tested an opt-out scheme in the Northern Queensland Primary Healthcare Network and in the Nepean Blue Mountains Primary Healthcare Network to examine consumer reaction, among other questions.
Just under 1 million Australians were registered for a My Health Record in 2016 during the opt-out participation trials, according to the ADHA.
Michael Davidson in Melbourne tried to opt out on Monday, only to discover he already had a record created in 2016.
His Medicare card was registered in the Blue Mountains, one of the opt-out trial zones, but he told the ABC he no longer lived in the area and no notification about the program reached him.
Mr Davidson said My Health Record phone operators told him on Monday it appeared he'd been rolled into the trial as a result.
"I'd rather my data never goes into My Health Record, and if it's there, is permanently deleted," he said.
He's worried that the system creates a "massive honey pot of data".
"I'm a software engineer, I'm well aware of the risks of any kind of electronic data, and weighing up that risk — I'm 35, I've lived 35 years without having a My Health Record or equivalent," he said.
Users complain about long call times
Mr Davidson also said he spent more than one hour trying to talk to someone at the ADHA on Monday.
On social media, some people claimed to spend hours on hold trying to contact the ADHA by phone, as well as reports of website malfunctions. Others said they had a quick experience.
Their experiences concerned Ms Wells.
"It doesn't send the right signal that those ... fundamental public information access points on day one had a falter," she said.
A My Health Record spokesperson said there "has been great interest" in the program.
She denied there had been an outage of the My Health Record opt-out portal accessed via the My Health Record website.
Regarding the issue of people unknowingly having a record, she said about 5 million record owners would have self-registered through myGov, a Medicare enrolment form, Medicare service centre or by phone. Others may have been assisted to register by their healthcare provider such as general practice or hospital.
An additional 1 million people were enrolled during the opt-out participation trials.
The Department of Humans Services, which is in charge of Medicare data, has been contacted for comment.
Anyone wishing to opt out can do it here ...
https://www.myhealthrecord.gov.au/for-y ... lth-record
I know I will be opting out.
