The Federal Government has made an eleventh hour back down from the latest MyHealthRecord deadline. Taking to Twitter, Health Minister Greg Hunt stated that Australians would have until January 31st to opt out of the universal electronic health record.
Originally, the Government has set an opt out deadline of October, however this was pushed to November 15th as scrutiny highlighted major legal and privacy concerns. The Minister had previously resisted calls for any further extension to the opt out period while the Government reviewed ways to address significant privacy issues with the system.
Today the Government worked with the Senate crossbench to extend the opt-out period for #MyHealthRecord.
The opt-out period will be extended until January 31, 2019, however, it’s important to note that people can opt-out at any time.
— Greg Hunt (@GregHuntMP) November 14, 2018
Moving the MyHealthRecord system from opt-in to opt-out has been highly controversial. The switch to an opt-out system came after Australians did not choose to sign up in any significant number.
20,000 Australians actively opted out of My Health Record on the first day of the opt-out period. By the end of October that number had swelled to over 1.1m Australians taking the time to actively opt-out of the system.
For those with a photo ID and a medicare card, the process can be completed in under 2min. As demonstrated in the video below. If you don’t have your details or proof of ID available, you can opt out by phone.
With the November 15th deadline approaching, users reported that the site and phone line was inaccessible. However the agency denied any problems with either the website or phone opt-out services.
The website to opt out of the #MyHealthRecord is currently down.
In the meantime, if you're still trying to decide whether you should opt out, here's what you need to know before the Thursday (tomorrow night) deadline: https://t.co/RRDhj2RmqA @abccanberra pic.twitter.com/aHVkaMYBQq
— Anna Vidot (@AnnaVidot) November 14, 2018
— Caleb Wise (@calebwise) November 13, 2018
As the Government continues to grapple with the implications of forcing all Australians into their MyHealthRecord system, new rules have been passed to allow those who have a record to delete it. Previously any user who wished to delete their record would still have all data retained by the government until 30 years after their death.
Law enforcement will also now be required to obtain a court order before being allowed to access a person’s health record. This had previously not been a requirement.
Health Minister Hunt has acknowledged that there is still more issues to address, while still insisting on pressing ahead with a forced opt-in for all Australians. In an announcement, The MP recognised that there was still a need for:
The government is yet to address the issues the MHR system has created for young people seeking confidential healthcare. Currently parents require permission from their teens to access their medical information from the age of 14.
However, under MHR, parents will retain access until their offspring reach 18. This has raised concerns for the health of young people who will not be guaranteed confidential access to health care.
While the system is said to have some personal controls built in to allow users to determine which health care providers can access which parts of their information, these controls are not being widely adopted. Reportedly, less than 0.5% of the 6 million health records the government has already created have privacy controls in the form of record or document passcodes enabled. This may be because many Australians remain unaware that a national health record of their data has already been created.
There is no word currently on whether Hunt’s proposed limitations on insurers will also apply to the National Disability Insurance Scheme, its administering body, the National Disability Insurance Agency or its many contractors and consultants. However, given the Government’s explicit intentions to use the ‘data lake’ it is creating with MHR to inform public health and policy, it seems unlikely to restrict or block the NDIA’s access to the health record system.
MyHealthRecord presents a particular challenge for people with disability. The promise of the system is to create ease and convenience, taking care of the heavy lifting of managing your personal health data between all the specialists and care professionals that may be part of your life.
However at the same time, there are clear flaws in both the design and creation of MyHealthRecord. These flaws create risk for privacy, fair treatment and personal safety. This is a high price to pay for convenience.
If you choose to opt out of MyHealthRecord, you can do so in as little as 2min by visiting https://www.myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record or by calling 1800 723 471. The ADHA are also publishing their call wait times, so if you do choose to opt out by phone, you can get an indication of how long it may take by checking their wait times page here.
Let us know your thoughts on MyHealthRecord. Is the risk worth the gain? Should the system be opt out or opt in? How should it be fixed and what more needs to be done? Tell us your view in the comments.