Human Rights Commissioner Edward Santow says Australians should be able to opt-in to include their medical data on the federal government's controversial My Health Record scheme.
Speaking to media at the Australian Human Rights Commission's conference on human rights and emerging technology in Sydney, Mr Santow said that while he was supportive of the system's potential, My Health would erode without public trust.
Human rights commissioner Ed Santow says Australians shouldn’t have to choose between strong data and a right to privacy.
"I think with any sensitive personal information people should have maximum autonomy and the best way to give people maximum autonomy is to make it opt in," Mr Santow said.
My Health Record is a digital database that will collate the medical records of every Australian if they do not actively opt-out of the scheme by October 15.
But concerns have been raised over who will have access to people's private information, with thousands of health organisations and professionals being able to use the data.
Mr Santow said that while My Health Record was intended to improve healthcare, that couldn't be done without strong community trust.
"First you need individuals to be able to exercise autonomy easily about whether they engage with the system or whether they don’t," he said.
"The second thing that you need is strong protections against misuse; to make sure it’s not possible for the system to be hacked and people’s personal information, very sensitive in the health area, to be stolen, misused.
"And the third thing is it needs to be crystal clear how that information will be used."
Mr Santow said there was understandable concern about who, under the legislation, was able to access the data, including debt collectors chasing patients over unpaid healthcare services.
"I see enormous benefits in having a healthcare system that is able to rely on strong data, but it’s a cop out to say that we have to make a choice between either having strong data but risks to our privacy and other human rights. I don’t think we should have to make that choice," he said.
Australia's Chief Scientist, Dr Alan Finkel AO, said he saw "enormous benefits" in individuals' health records being passed on between different providers.
"But also from the learning we can gain from doing legitimate research on de-identified data, which will help with future diagnostics, which will help with public health, and we just have to have a balanced, considered approach to ensure security of the data, whether it's individual records or large, de-identified data sets," Dr Finkel said.
But in a nod to the debacle surrounding doctor-booking site HealthEngine – which uses My Health Record data – reportedly sending patient information to personal injury lawyers, Dr Finkel said people should be knowingly agreeing to what they are signing up to.
"We need to have a set of options that you have to click through to actively agree to share your health data – in some cases with a law firm," he said.
Both men spoke at the conference, which focused on human rights challenges in technological developments and artificial intelligence.
Mr Santow said the issues discussed would contribute to a white paper on how Australia can become a global leader in human rights responses to artificial intelligence.
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