There's been a media storm on My Health Record since the opt-out period opened in mid-July, with many Australians choosing not to have their medical records stored online.
While Indigenous health organisations see the benefits of digital records to improve health care for Aboriginal and Torres Strait Islanders, they are keen to stress it is a matter of individual choice when it comes to the privacy concerns.
The scheme launched with the support of large medical organisations, but the outpouring of public fears had of Australian Medical Association President Tony Bartone and incoming president of Royal Australian College of GPs Harry Nespolon.
It's clear that ensuring health information is available when medical professionals need it is an important part of the story. But with the health information stored online, many have questioned who might be allowed to access that information in which circumstances, who might be able to hack that information, the permanence of records once they are created and how that information could be used.
Human Rights Commissioner Edward Santow is particularly worried about discrimination Indigenous Australians could face in the changing digital landscape.
"We are starting to glimpse how our personal information can be used against us," Mr Santow on Tuesday.
He said the way personal information is being used online "is creating new forms of discrimination known as algorithmic bias".
"It can mean that certain groups such as Indigenous people are unfairly targeted by police and that is a wholly new thing," Mr Santow said.
And specifically relating to My Health Record, "I think we can do better".
The Commissioner believes it's crucial people have the autonomy to "control how our personal information is used", ensuring there are "strong protections against cyber attack and misuse" and that this information doesn't have "secondary uses".
"For example, there have been suggestions that it can be used if you are slow at paying a health care bill, to chase that debt," Mr Santow added.
Cautious support
It's clear Indigenous health organisations are cautiously backing the scheme given the disadvantages in health experienced by most Aboriginal and Torres Strait Islanders compared to their non-Indigenous counterparts.
Karl Briscoe, CEO of the National Aboriginal and Torres Strait Islander Health Worker Association (NATSIHWA), is a proud Kuku Yalanji man.
He told NITV News that the public backlash regarding privacy was to be expected.
"It doesn’t surprise me that a lot of people are opting out just for the mere fact that there’s a risk of their information being hacked,” Mr Briscoe said.
Almost six million Australians had a My Health Record before the three-month opt-out period opened on July 16.
However, Mr Briscoe believes there are clear situations in which having a My Health Record would be useful to facilitate the health needs of Aboriginal and Torres Strait Islanders. This may especially ring true for those living in remote areas who don't always access medical services in the same place, or for people who don't speak English as their first language.
“I always think about our mob when they have to go into hospital say on a Friday night and they may not be able to communicate what medications they’re on," he said.
"And if the My Health Record is in place they can actually look on the My Health Record if their medications are available and know exactly what treatment regime they’re on for their medications."
Some Aboriginal Controlled Health Organisations have already been working with local health districts to share records in trials "with the patients' consent".
"Otherwise, if it wasn’t available, they’d have to wait until Monday morning to contact their local GP or ACCHO to find out exactly what medications they’re on," Mr Briscoe said.
However, Mr Briscoe agrees privacy issues are a concern. He believes the benefits may outweigh the risks in some cases.
"Whether they choose to take that risk on, that’s really an individual’s choice," he said.
"But we do know that over the last 10 years, the 10-year life expectancy gap hasn’t closed, it’s actually got wider so I just see it as a good thing to support because it’s improving our mob’s health."
In a statement, a spokesperson for Indigenous Allied Health Australia (IAHA) carefully weighed up potential benefits as well as patient privacy issues.
"Systems need to be secure and protect people’s information managed by the person," the spokesperson told NITV News.
"Information provided by and about Aboriginal and Torres Strait Islander people and communities has not always been treated respectfully, or used in ways that engage or benefit those people."
However, IAHA can see the role My Health Record could play by helping to provide continuity in health care.
"In combination with other efforts to improve access to and quality of care – such as the further development of Aboriginal and Torres Strait Islander health professionals in allied health, and across the board – the My Health Record could potentially have a much needed, positive impact on health outcomes," the spokesperson said.
"One of the potential benefits of the My Health Record may be to provide further evidence of the disparity in health care access and services – and hopefully have these addressed."
The roll-out
With 20,000 people choosing to opt-out the first day it was rolled out, the Digital Health Agency says the figures for the last week and a half and the break down of how many of those identify as Indigenous are currently unavailable.
"Following the end of the three month opt-out window, there will be a 30-day reconciliation period for the processing of paper forms arriving by mail," a spokesperson told NITV News.
"Records will then be created for Australians who have not opted out of having a My Health Record. These records must be created by the end of 2018 and further statistics will be available then."
The Digital Health Organisation has been working with Aboriginal health workers and organisations to implement the scheme.
"The Agency is partnering with the National Aboriginal Community Controlled Health Organisation (NACCHO) and its state affiliates, and the Primary Health Networks (PHNs) nationally, to raise awareness of the expansion program with health professionals, Indigenous Australians and CALD groups, to provide on the ground support for individuals who choose to opt out," the spokesperson said.
"Information is available in over 15,000 health care locations including general practices, pharmacies, public and private hospitals, and via Aboriginal Medical Services and National Aboriginal Community Controlled Health Organisations."
The first two controversial weeks
In a statement today, Australian Council of Social Service (ACOSS) CEO Cassandra Goldie said assurances from the Digital Health Record "is insufficient protection".
“ACOSS is particularly concerned that the legislation specifically allows the Federal Government to use My Health Records to 'protect public revenue'," Dr Goldie said.
"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 week, federal MP Tim Wilson went against his colleagues and opted-out of the scheme,.
Last week, it was revealed the digital health records of 1.5 million Singaporeans - including the prime minister's - .
Much has been made of Australia's own health data breach, with Medicare card details discovered last year .
Earlier this week, the Guardian reported the , a post that contradicted advice from Health Minister Greg Hunt over whether My Health Record information could be accessed by police without a court order.
The opt-out period closes on October 15, 2018. If you do nothing, a My Health Record will be automatically created for you.
