The risks and benefits of your new online health record
AUSSIES are being asked to trust the federal government with their deepest medical secrets in the new My Health Record system, which has been slammed by privacy experts. Here’s what it means for you, and how you can escape it.
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AUSTRALIANS are being asked to trust the federal government with their deepest medical secrets as a new $1 billion online health record is rolled out for everyone.
Every Australian will have a My Health Record created for them that will reveal if they’ve had an abortion, mental illness, sexually transmitted disease or drug addiction unless they tell the government they want to opt out from next week.
The government says the My Health Record will reduce medication errors and the duplication of medical tests and make it easier to keep track of your health but some privacy and IT security experts are urging people to opt out.
“I will personally be opting out because I don’t think the government has demonstrated the security of the My Health Record System,” University NSW privacy expert Dr Katharine Kemp said.
“There have been major data breaches globally in respect of health data.”
There will be no national advertising campaign informing people about the record nor will there be a letter to every household providing information so people will have to get information about the system from government websites their GP or a public library.
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WHAT IF I WANT TO OPT OUT?
Consumers will be able to opt out of a My Health Record by:
• Visiting the My Health Record website and opting out;
• Phone 1800 723 471 for assistance;
• Via paper form.
In regional and remote communities people can opt out though AusPost or via Aboriginal Medical Services.
The rollout of the record is troubled with the vast majority of doctors not using the records and some reporting it crashes their computers, the many documents uploaded on the record can’t be labelled and searching for a particular test result is very difficult.
Very few of the 5.7 million records created so far have a shared health summary uploaded by a GP and most specialists have not registered to use the record.
A recent University of Canberra survey of patients who had My Health Records in the ACT found “no participants had yet found any benefit or use for it”.
However, the Australian Digital Health Agency (ADHA) running the record says a Blue Mountains pharmacist was recently able to identify a prescribing error after a hospital put a discharge report on a patient’s My Health Record.
If you don’t opt out by October 16, a My Health Record will be automatically created for you and even if you later decide to cancel it, the information will be stored online until 30 years after you die, or for 130 years if the government is never informed of your death.
The government will own the record and the System Operator, the ADHA and doctors can attach other unspecified information from other sources to your My Health Record without your permission.
HOW WILL IT WORK?
Once it is activated, a list of all the Medicare funded doctor’s visits, medical tests and subsidised medicines you’ve taken for the last two years will be added to the record.
The Australian Digital Health Agency (ADHA) warns this list “may indicate diagnosed conditions or illnesses or symptoms and tests”.
You will have to ask your doctor to put a shared health summary on the record which lists your medical conditions and you can put notes in indicating any allergies you suffer.
The record is set on open access so unless you take action to set up a PIN number to protect the information any health professional including your physiotherapist, optometrist and podiatrist will be able to see information about your medications and health conditions.
In opt out trials run in 2016, fewer than one per cent of people set up a PIN number to protect their information indicating they did not properly understand how the record works.
The government will also share the information from your health record with third parties such as researchers unless you take action to tick a box to prevent this.
And registered healthcare providers are able to override your PIN number and access you're My Health Record in emergency situations for up to five days.
WHAT ARE THE RISKS?
The information in it can also be used without your consent for gathering government revenue such as cracking down on fraud, it can be used in court and for medical insurance purposes.
The government says the information is highly secure and you can track who views your My Health Record through an audit process, there are fines of $90,000 and up to two years jail time for people who breach the record.
But IT security experts warn there have been a series of recent high profile breaches of health information and earlier this year News Corp revealed there is a health data breach every two days and no financial penalties have ever been applied.
In 2016, the government released 30 years’ worth of “de-identified” Medicare data on individuals, within days it was “re-identified” by Melbourne University academics and last year Medicare numbers were found for sale on the dark web.
Health Minister Greg Hunt says the My Health Record “can save lives and protect lives by reducing medication errors, by ensuring that there isn’t incompatibility between medication, by ensuring that we have compliance that patients keep up their medication”.
The ADHA’s chief medical adviser Professor Meredith Makeham says the new record is like an online bank account for your health information that is secure and can be accessed via your mobile phone.
However, privacy experts warn the information on the record could be used to blackmail people and they argue it’s really about the government getting hold of information they can use to control the way doctors practice.
“The only conclusion is that the My Health Record system has been designed for governments as yet another way to monitor and investigate normal behaviour of its citizens looking for suspicious activities,” the Privacy Foundation said.
Originally published as The risks and benefits of your new online health record