Australians are being warned to consider potential privacy issues with the new digital My Health Record system as the three-month opt-out period for the scheme begins.
People’s medical records will be stored on a national database under the federal government scheme, to be viewed by patients, GPs, specialists, pharmacists and hospital staff.
The records will be populated with Medicare records from the previous two years when they are set up, and by the end of 2018 the federal government’s Australian Digital Health Agency (ADHA) will create a record for everyone unless they opt out. The opt out period begins today (July 16) and ends on October 15.
The scheme has the backing of several peak medical bodies, including the Australian Medical Association, Royal College of Australian GPs and the Pharmacy Guild of Australia.
The Australian Federation of AIDS Organisations and the National Association of People With HIV Australia (NAPWHA) have produced fact sheets about the My Health Record system and called on people to consider the benefits and risks.
“People with or affected by blood borne viruses and sexually transmitted infections or communities where legislative barriers still affect their health, may want to further explore the implications of data sharing around My Health Records,” the AFAO says.
NAPWHA said there were privacy concerns around the system and it was important for people to make an informed decision as to whether or not they participate.
“A central database of an individual’s health information means your MHR can be accessed anywhere, anytime by doctors, specialists and hospitals — which is particularly useful for people with HIV who are in the care of multiple healthcare providers,” the organisation said.
“There are measures that allow individuals to control who can access the information stored in their MHR and you will be able to set a password so that only certain people can access individual pieces of information.
“However, in order to properly operate the privacy controls you will need to understand and assess every single piece of information on your MHR and make a decision about who it should be shared with.
“A person’s MHR will be accessed by a broad range of individuals and bodies that are not necessarily healthcare professionals and who may have limited, outdated or stigmatised understandings of HIV.
“Vulnerable populations — such as people from gender and sexual minorities, sex workers, people who use drugs and people with HIV — need to be mindful of the potential risks of the MHR scheme i.e. an elevated possibility of criminal prosecution and unwanted disclosure of HIV status.”
The My Health Records Act does allow for the disclosure of data to a range of enforcement agencies, including police, courts and the immigration department, for the purposes of upholding the law or protecting public revenue.
But Health Minister Greg Hunt told the ABC it was not true that people could be criminalised through the My Health scheme.
“The Digital Health Agency has again reaffirmed that material, which is the case with every medical record in the country, can only be accessed with a court order,” he said.
Eloise Brook, director of the Sydney support service The Gender Centre, said many in the transgender community were concerned about their privacy and would be opting out of the scheme.
“For the general population, a lot of the information that they provide is innocuous,” Brook said.
“But for a trans person, a previous name or previous gender, these things, while seemingly innocuous, actually cause distress for trans people, especially if it leads to misgendering or deadnaming.
“Almost all of the people that I’ve spoken to have expressed anxiety about e-health records and are going to opt out.”
Dr Steve Hambleton from the ADHA told ABC News the system has robust cybersecurity protections in place.
“Patients control access to the record, so they can switch off their entire record and make it only available using a pin code, or use that process with individual documents,” he said.
Some third-party health apps will be able to show patients the data on their record, but not store it, and Dr Hambleton said strict security safeguards were in place.
Those providers undergo “strict assessment” and must abide by an agreement which demands they do not download or store My Health Record information on their own system, or pass that data on to a third party.
He said he believed the new electronic health record system would reduce the rate of Australians hospitalised due to medication errors by making information easily accessible to medical staff.
Australian Medical Association president Dr Tony Barton told ABC Radio the privacy of medical records is “absolutely paramount” in every phase and every part of the health system.
“This is actually going to save lives – if someone was unconscious in an emergency department on the other side of the country, and you’ve got a My Health Record, it can be viewed in an emergency situation, give important clinical details about medications you’re on or previous allergies or previous situations,” he said.
“Patients will have the opportunity over the next three months to consider and talk to their doctor, their trusted health professional, and say, ‘What do you say, doc, do you think I should or shouldn’t?’
“[The opt-out period] is an opportunity to understand the situation and make an informed decision.”
National Rural Health Alliance CEO Mark Diamond said the system would save lives in regional Australia and urged people not to opt out.
“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,” he said.
“If they’re unconscious, and the medical team doesn’t have access to their health history, the team may not be able to provide lifesaving care.”
The information in a person’s My Health Record will be held for 30 years after their death. If that date isn’t known, the data is kept for 130 years after their birth.
To find out more about the My Health Record or to opt out, visit the website or call 1800 723 471. Paper opt-out forms will also be available at Australia Post outlets.
You will need your Medicare card and other identification, for example a driver licence, to complete the opt-out process.
Once you have completed the opt-out process, you cannot cancel your request but if you decide later that you would like a My Health Record, you can create one.