Why patients can’t use their My health record

Thousands of Aussies can’t access their online health record, despite its creation costing taxpayers a staggering $2 billion.

Exclusive: It’s cost taxpayers nearly $2 billion but most Australians can’t access their online electronic health record and most have not set a PIN number to protect information on it.

Nine in 10 Australians had a My Health Record created for them on January 31 after they failed to opt out of the controversial system.

However, News Corp has learned four in ten people have no way of using it or checking whether the information on it is accurate or setting privacy controls.

To access the record you need to have a MyGov account but even though 23 million Australians have a My Health Record, only 15 million people have a MyGov account.

While many individuals can’t access their “My” Health Record, any doctor, pharmacist or public hospital, pathology or x-ray company can see their record and upload information on it without getting the patients permission.

“My Health Record is based on the concept of standing consent,” Australian Digital health Agency chief Tim Kelsey explained to a Senate Estimates Committee.

This means their doctor can access the record and even trigger its activation without the patient’s knowledge or consent.

Chief Executive Officer of Australian Digital Health Agency Tim Kelsey speaks during his address to the National Press Club in Canberra. Picture: AAP

Doctors are not required to get their patients consent to upload a shared health summary onto the My Health Record that can reveal if a person had an abortion, a sexually transmitted disease, is impotent or has a mental illness.

Once the record is activated two years’ worth of Medicare and prescription data is downloaded onto the record and this can also reveal sensitive or embarrassing health conditions.

Once that information is uploaded it can be accessed by hundreds of thousands of health practitioners including podiatrists, optometrist and physiotherapists unless the patient sets up a PIN number or other privacy controls to protect it.

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The Australian Digital Health Agency has told News Corp it is good practice for a doctor to get their patients consent to populate the record but it is not required under the legislation.

Salinger Privacy director and former Deputy Privacy Commissioner for NSW Anna Johnston said the real privacy risks of the new online health record were yet to play out.

“People may not realise they have the record or realise what is included or excluded and who can see it,” she said.

Dr Kerryn Phelps fought to stop police and the tax office from accessing My Health records. Picture: AAP

Dr Kerryn Phelps who led a parliamentary revolt and stopped police and the Australian Taxation Office accessing the record without a warrant said doctors weren’t using it.

“Doctors question the clinical usefulness because there are so many gaps, information is selectively uploaded or removed and clinical mistakes can be made by omission as well as commission,” she said.

“It’s largely a data mining exercise,” she said.

Australian Medical Association spokesman Dr Chris Moy said while the record had a “soft landing” there it would snowball as more and more medical test results were added to the records.

He questioned whether many people would want to set a PIN number to protect the information.

Seven years after its launch and six months after the opt out period ended only 1 in 8 records contain a health summary that makes them useful.

The My Health Record government website. Picture: Supplied

Only 55 per cent of private hospitals private hospitals and three in four public hospitals are connected to the record.

Most specialists can’t access it.

The Australian Digital Health Agency said patients who don’t have a MyGov account can call the My Health Record Help line for assistance in managing their record.

The Help line can also help patients set up a nominated representative like a family member or carer to help manage their record, the agency said.

Australians can cancel their My Health Record at any time.

Originally published as Why patients can’t use their My health record