Australians are being warned about potential privacy issues with the new digital My Health Record system. Here's what you need to know.
From today, people who do not want their medical records stored on the national My Health Record database will have until October 15 to opt out.
While various health and migrant groups say the database could save lives, there are fears about the security of data.
Some Australians seeking to opt out said on social media that the My Health Record helpline would not connect them to an operator.
What is My Health Record?
My Health Record an Australia-wide catalogue of personal health information.
People's medical records will be stored on a national database that can be viewed by patients, doctors and other medical staff.
Records can include:
- Prescription history
- Emergency contacts
- Specialist and referral documents
- Allergy information
- Immunisation history
- Diagnostic imaging reports (such as ultrasound or X-ray results)
- Pathology reports (such as blood tests)
- Hospital discharge information
- Medicare claims history
- Indigenous, veteran and Australian defence force status
- Organ donor status
It 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 significant health and economic benefits of My Health Record for all Australians [include] fewer adverse drug events, reduced duplication of tests, better coordination of care for people seeing multiple healthcare providers, and better-informed treatment decisions,” AMA President Dr Michael Gannon said.
Third-party apps will be able to show people their My Health Records, but not store related data.
Users can see who has accessed their record and set up alerts and notify them when it is accessed.
Those who do not opt out will have a record created for them on their behalf, which will be generated around the middle of November.
Records can be cancelled at any time after the opt-out period, but your data will remain in the database until three decades after you pass away.
Is the data safe?
Security advocates are urging people to consider opting out, citing potential privacy issues.
"We’re concerned about how private information will be properly secured in the future. This government does not have the best track record when it comes to national databases of private information,” Digital Rights Watch Chair Tim Singleton Norton told SBS News, referring to Centrelink's controversial "robo-debt" recovery program.
Mr Singleton Norton said the government should reconsider its approach to the scheme.
“While My Health Record is a good idea in theory, we need to make sure the emphasis is based on an individual rights-based approach, rather than what it is now, which is ‘let’s just build up a database now, and that’ll give us a wealth of knowledge and we’ll see how we’ll use it in the future," he said.
“That’s not caring about an individual’s right to control their privacy.”
The government's Australian Digital Health Agency has played down security concerns.
"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," the agency's Dr Steve Hambleton told the ABC.
Dr Hambleton said the system has robust cybersecurity protections in place, and there is “zero possibility” of a breach of information.
“[There’s] very strict privacy and security requirements that apps need to go through to be able to connect to the record. There's a long list of terms and conditions.
“In a nutshell, there is zero possibility that any information is able to be shared with third parties."
Opposition Leader Bill Shorten said the digital health record system was an important reform because it would lead to better health outcomes.
"But I don't blame people for being sceptical about this government in terms of the way it implements digital change programs," Mr Shorten told reporters in Tasmania on Monday.
"I say don't throw the baby out with the bathwater, let's make this work, but I do accept this government have an ability to turn a lot of things into a mess when they touch them."
What are the benefits for migrants?
Federation of Ethnic Communities Councils of Australia, the peak national body representing Australians from culturally and linguistically diverse backgrounds (CALD), said it hopes My Health Record information will not be used for the purposes of immigration enforcement or decisions.
It comes after the confidential medical records of more than 8,000 Brits were given to the Home Office in a crackdown on illegal immigration last year.
“We believe that many parents, carers, Australians for whom English is a second language, older Australians and newer migrants will gain from having a My Health Record,” FECCA Chairperson Mary Patetsos told SBS News.
“But we recognise that some individuals may wish to opt out of My Health Record. We are working with the ADHA to ensure that CALD Australians are provided with the necessary information in multiple languages and through a variety of channels to make an informed decision about the MHR.”
Will it help Australians in rural areas?
The National Rural Health Alliance said My Health Record will save lives in regional Australia, and urged people not to opt out.
“We think it’s important for everyone, but particularly people in rural areas,” National Rural Health Alliance CEO Mark Diamond told SBS News.
Mr Diamond said people living in rural areas are familiar with problems of accessing health services in person, and there is also reluctance in those areas to access healthcare even when it is easily available.
“In the country, people’s health conditions are diagnosed later than their metropolitan counterparts. What that then results in, is their condition getting worse and requiring a hospital admission,” he said.
“That hospital may then not have access to enough of their medical history to help them. [Staff] really need to have that information, particularly in life-threatening situations. Country people find themselves in those types of situations more than their metropolitan counterparts do.”
How can I opt out?
You can visit www.myhealthrecord.gov.au or call 1800 723 471.
Opt-out forms will also be available in select Australia Post outlets, indigenous health organisations and in prisons.
Parents with children under the age of 18 listed on their Medicare card can opt out on their behalf.
Children aged 14 and over can opt out individually online.