Australians have until the close of January 31 to decide to opt out of the controversial My Health Record – and there’s a lot to consider.
The date was pushed back twice last year amid privacy concerns, but Thursday is now the official deadline, before every Australian is automatically registered to the e-health database.
The record has been beleaguered since it was first flagged, with two deadline amendments, potential privacy breaches, and Labor calling for an independent review into the system.
The website crashed in November in a rush to opt out over privacy fears, before Health Minister Greg Hunt conceded to move the deadline to January 31.
Just this week, The New Daily revealed a “confusing” design flaw in external software for pathologists that had the potential to lead to errors.
Mr Hunt said newly rolled out privacy protections could guarantee medical data would never be wrongfully exposed.
“We listened to the community and we worked on adding additional safeguards and protections,” he said on Wednesday.
“Although there hadn’t been any significant issues, we wanted to provide that extra security and extra support.”
About 6.45 million people have already signed up, Australian Digital Health Agency (ADHA) said last week, while 1.147 million people had opted out as at October.
What is it?
My Health Record would be a digital “one-stop shop” of a person’s medical history.
It could be most useful in an emergency to inform frontline health workers about allergies or medication affecting a patient.
Somebody with chronic or complex health issues would not have to relay their story to new doctors, also benefitting those who don’t speak English.
Once a person has a My Health Record, sensitive information like sexually transmitted infections (STIs) or mental health status could be uploaded.
Patients can also restrict access to particular records by logging on, or ask their clinician to block individual records from being uploaded in the first place.
Australians can delete their record at a later date, or sign up down the track if they have opted out.
What’s the problem?
New laws came into effect last week strengthening patient data privacy, stopping employers, insurers, the tax office and Centrelink from accessing or requesting access to a record.
Law enforcement will need a warrant.
The reforms strengthened protections for domestic violence survivors and 14 to 17-year-olds. When a child turns 14, their parent or guardian will automatically be booted from accessing their record.
Someone who misuses the records could be fined up to $315,000 and jailed for five years.
All information will now be deleted if a patient decides to quit.
Lyndsey Jackson, chair of Electronic Frontiers Australia (EFA), welcomed the announcement patients will have the option of permanently deleting their digital record.
“I don’t think there has been a lot of detail into functionally how that works,” she told The New Daily.
“But it at least feels like there’s been some concession that’s been made for people who have been unaware that they’ve needed to opt out by deadline … and are going to find themselves with a record they didn’t want or didn’t ask for later down the track.”
Privacy fears remain for some advocacy groups.
ADHA says the My Health Record system is secure, with multi-layered and strong safeguards like encryption.
There were no malicious attacks that compromised the integrity of the My Health Record in 2017-18, according to ADHA’s annual report.
But the agency reported 42 data breaches in the year to the Office of the Australian Information Commissioner.
That includes an unauthorised access of a My Health Record, where an incorrect parental representative was assigned to a child.
Two dozen breaches were suspected cases of Medicare fraud, with unauthorised claims appearing in My Health Records of affected patients.
Doctors have raised concerns that a My Health Record could have potentially fatal omissions or inaccuracies.
That led Independent Wentworth MP Dr Kerryn Phelps to question whether doctors could be liable for injuries if a patient suffers a mishap because of information in their digital record.
The Australian Medical Association (AMA) and Consumers Health Forum of Australia support the e-health system and reforms.
Labor health spokesperson Catherine King on Wednesday called for the system to be reviewed by the privacy commissioner.
“Labor believes in the promise of digital health,” Ms King said in a statement. “But we must get this important reform right.”
How do I opt out?
You can opt out online by Thursday.
You can delete your record at any time.
Contact the helpline for assistance on 1800 723 471.