Minister backs down on My Health Record privacy following public and doctor backlash

Following urgent talks with Australian Medical Association President Tony Bartone and Royal Australian College of General Practitioners president-elect Dr Harry Nespolon, Mr Hunt has agreed to redraft the legislation underpinning My Health Record in an attempt to calm privacy fears among patients and doctors.

The current legislation appears to give the Australian Digital Health Agency which manages My Health Record the authority to release patients’ health data to the police or other agencies such as the Tax Department or Centrelink.

Thousands of people have rejected having a My Health Record since an opt out period began last month, citing privacy and security concerns; and doctors were also threatening to boycott the system.

In a statement Mr Hunt said the Government would strengthen privacy provisions under the My Health Record Act to match existing ADHA policy and remove any doubt about the original 2012 legislation.

“The amendment will ensure no record can be released to police or government agencies, for any purpose, without a court order,” he said.

“The Digital Health Agency’s policy is clear and categorical - no documents have been released in more than six years and no documents will be released without a court order. This will be enshrined in legislation.

“This change to the My Health Record Act will therefore remove any ambiguity on this matter.”

Mr Hunt said the legislation would be further amended to ensure that if someone wanted to cancel their MHR the record would be permanently deleted from the system.  At the moment if a record is cancelled it remain on the system for 30 years after the patient’s death.

A My Health Record 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.

Once created it will 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. 

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

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

All Australians will now have a My Health Record created for then unless they opt out. The original opt out deadline was October 15, however Mr Hunt has said this may be extended for a further month. 

The legislation amendment announcement has been welcomed by health organisations.

Dr Nespolon said “The commitment to Australian patients from Minister Hunt is a clear win and will enable confident and safe use of the system into the future. 

“The general practice community has clearly demonstrated these issues are of utmost importance and must be addressed if we are to continue providing the highest quality healthcare to our patients, under the overarching and critical condition of patient confidentiality and safety.

“When a patient steps into the office of one of our GPs, we want them to know that their health information is private and protected.

Mark Diamond chief executive of the the National Rural Health Alliance said it addressed growing concerns about who can access information contained in a  person’s online health summary and under what circumstances.

“Concerns have been voiced in the rural and remote health sectors that My Health Record information could be accessed by agencies like the Tax Department and Centrelink without a court order,” Mr Diamond said.

“Even though the Australian Digital health Agency says that would never happen and importantly it never has happened the legislation did not make that clear.”

Mr Diamond said removing the ambiguity was critical for people to trust their health information to the My Health Record system.

Acting Australian Information Commissioner and acting Privacy Commissioner Angelene Falk has also welcomed the Government’s decision. 

“The proposed amendments to require a court order to release any My Health Record information without consent will create certainty and enhance privacy safeguards for all Australians.

“Significantly, the proposed amendment to allow an individual to permanently delete their record will give the community greater control over their health information.

“These proposed changes build on the existing privacy and security safeguards in the My Health Records Act, including sanctions enforceable by the Office of the Australian Information Commissioner.

“I also welcome the additional communications to the public to assist individuals make an informed decision as to whether or not to have a My Health Record,” she said.

For further information on My Health Record or to opt out: 1800-723-471  www.myhealthrecord.gov.au