My Health Record security backlash sees thousands opting out

PRIVACY FEARS: Data record opt out gathers momentum.
PRIVACY FEARS: Data record opt out gathers momentum.

PRIVACY implications and fears of security breaches are driving thousands of Australians to opt out of the My Health Record national data base.

As doctors also threaten to boycott the scheme over patient privacy concerns,  Australian Medical Association president Tony Bartone has announced he will have urgent face-to-face talks with Health Minister Greg Hunt next week to gain assurances that the government would take further steps to ensure the privacy and security of patient records.

Members of the public have until October 15 to opt out or have a record automatically created for them on a national database available to thousands of medical practitioners.

A MHR is an online summary of a person’s health record that allows information to be shared between healthcare providers like GPs, specialists, hospitals and pharmacists.

It will immediately contain two years worth of Medicare and PBS records. Other information can then be added by the record holder or healthcare providers, including medical conditions, medications, test results and documents like advanced care directives.

New clinical information will be uploaded to a patient’s record unless they request otherwise.

Patients can also control some privacy aspects using a variety of access codes. They can also opt out at any time but the information on their record will be remain stored and available in the system for 30 years after their death.

MHR data will also be made available to researchers and for public health purposes unless the patient changes the privacy settings on their record.

MHRs have been voluntarily available since 2012 but less than six million people have so far opted in.

Dr Bartone said there had been in groundswell of concern from AMA members, the broader medical profession and the public about the 2012 legislation framing the My Health Record, particularly Section 70, which deals with the disclosure of health information for law enforcement purposes.

Mr Hunt has said that that no documents would be released to law enforcement agencies by the Australian Digital Health Agency (ADHA) without a court order. 

However privacy experts have expressed concern about the wording of Section 70 which appears to allow the ADHA to provide a patient’s MHR details to law enforcement agencies and the tax department.

OPT OUT: Thousands of Australians have already rejected the Government's My Health Record scheme.

OPT OUT: Thousands of Australians have already rejected the Government's My Health Record scheme.

Since the opt out period began some people have also complained that they have already had a record created for them without their knowledge.

During an opt out trial in the Blue Mountains and Northern Queensland last year just 1.9 per cent of people opted out of the scheme which privacy advocates says was poorly promoted. 

In contrast, it’s estimated that 20,000 Australians opted out on day one of the current opt out period, July 16, with many more rejecting the system since then.

At present 12,860 healthcare professional organisations are connected to the system including general practices, hospitals, pharmacies, diagnostic imaging and pathology practices.

Liberal MP and former Human Rights Commissioner Tim Wilson recently revealed he had opted out and called for the system to be voluntary opt in.

Former AMA president Dr Kerryn Phelps has also called for a re-drafting of legislation to provide further safeguards for sensitive patient information. 

Privacy concern have been echoed by  the Australian Council of Social Services which said that while My Health Record had the potential to deliver better coordinated care and allow people more control over their health information, the My Health Records Act 2012 “failed to adequately protect the use of a person’s health information and is out of step with community expectations of privacy”.

ACOSS Chief Executive Dr. Cassandra Goldie said, “The promise of My Health Record is a system that will enable people to control their own health information and facilitate better coordinated care.

“However, it has become clear that the My Health Records Act currently allows the system operator, the Australian Digital Health Agency, to use or disclose information for a range of reasons completely unrelated to a person’s health. This is clearly unacceptable and of major concern.

“ACOSS is particularly concerned that the legislation specifically allows the Federal Government to use My Health Records to “protect public revenue”. This could result in the release of My Health Record data to government agencies in a range of circumstances unrelated to a person’s health, including social security, tax and the criminal justice system. This should only be done either with the person’s express consent, or by court order or subpoena.

Opposition Leader Bill Shorten has called for the opt out period to be suspended until privacy concerns had been addressed.

Managing a MHR requires a level of digital literacy and access, which concerns seniors’ advocates. 

Eliza Littleton from the Combined Pensioners and Superannuants Association is worried that people without access to the internet or with poor digital literacy, such as some elderly people, won’t be able to exercise control of the information on their record.

The security of data is a major issue with some Australians.

The Australian Information Commissioner investigated a number of cases of unauthorised access of MHRs in 2016-17.

Only last week hackers stole personal data belonging to some 1.5 million people, or about a quarter of the population, from the Singapore health database.

Last year the British NHS was hit by a crippling cyber ransomware attack called WannaCry.

Saving lives

Many health experts around the country continue to promote MHRs saying the can “save lives”. 

Australia’s peak body for rural and remote health urges country people to embrace the system.

“Simply put, My Health Record can save lives,” said National Rural Health Alliance chief executive Mark Diamond.

“Australians living in rural and remote areas are more likely to end up in an emergency department from a heart attack, car accident or diabetic coma.

“If they’re unconscious, and the medical team doesn’t have access to their health history, the team may not be able to provide life-saving care.”

Mr Diamond said country people were 25 per cent more likely to suffer from coronary heart disease, 40 per cent more likely to die from diabetes, and five times as likely to die from a road accident in remote areas.

“A My Health Record means that all your important information is at the fingertips of your doctor, nurse or surgeon,” he said.

Replying to privacy risks, Mr Diamond said the alliance was satisfied the Australian Digital Health Agency was using the “most robust security measures to safeguard people’s health records”.

Travellers’ friend

ACTIVE: Ray and Lorraine Gardner always check their My Health Record as well as their motorhome before setting off on their travels.

ACTIVE: Ray and Lorraine Gardner always check their My Health Record as well as their motorhome before setting off on their travels.

A My Health Record has proven invaluable for seasoned travellers Ray and Lorraine Gardner.

They both signed up in 2012 at about the same time they first set off to explore Australia in their motorhome.

Since then they have travelled vast distances, often through rugged terrain; but before they go they always make sure their records are up to date. 

The couple, both 71, have a range of health conditions including diabetes, melanoma, a back fusion, nerve operations and a penicillin allergy.

”With My Health Record you don’t need to worry about remembering your health history when you visit different GPs,” Lorraine said. “Our health history travels with us. It gives us peace of mind so we can continue the enjoy the journey.”

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