Mistrust of the government’s ability to manage large scale digital infrastructure projects is making people reluctant to sign up to programs like My Health Record, research has found.
Professor Deborah Lupton from the Centre for Social Research in Health and Social Policy Research Centre at UNSW says highly publicised digital fails like the 2016 Census crash and Centrelink’s Robo-debt disaster have eroded public faith in the government’s technical ability.
The Australian Digital Health Agency wants to eventually enroll every Australian in the national electronic health record system but one in ten have chosen to opt out with a national participation rate of 90.1 per cent, according to agency figures.
As part of a wide-ranging women and digital health research project done in 2017, Professor Lupton asked subjects whether they had joined My Health Record and why or why not.
The study involved 66 participants aged 22-78 from across Australia.
While some people weren’t joining because of privacy and security concerns, the biggest barrier to people signing up was a lack of trust in the government’s “general technical expertise”, Professor Lupton reports in the current edition of the journal Digital Health.
The research showed the women weren’t worried that “the government’s out to get us, they’re watching us”, or even that third parties like insurance agencies could potentially get hold of the data, Professor Lupton told Government News.
“What they were thinking was ‘they’re incompetent’, which is a different issue. It really was ‘I just don’t trust the government to do a good job’.”
Professor Lupton’s survey, consisting of a series of interviews and focus groups, found uncertainty and a lack of awareness and interest in My Health Record.
Technical difficulties were major barriers to using the system and no participants had yet “found any benefit or use for it”, the report says.
“But another reason was that they just thought the government was incompetent and they couldn’t trust them to do a good job with it,” Professor Lupton said.
Trust in government low
This was in the context of separate research showing Australians have a very low level of trust in government to begin with, Professor Lupton said.
“We need to understand that in Australia people are already operating in a state of distrust of government structures and services,” she said.
“We’ve had these highly publicised events where government rollouts of various high-level digital infrastructures have been problematic to say the least.”
She says the government needs to regain the trust of the Australian public in its competence around digital infrastructure which at the moment “is a major barrier to people wanting sign up to things like My Health Record”.
The government also needs to do a better job in communicating information about what My Health Record is about as well as the pros and cons of the system.
Research carried out in 2018, involving younger men and women aged 16 to 25, indicated young people are poorly informed about the electronic health system.
“They just basically had not idea about it,” Professor Lupton said.
The government also has an ethical responsibility to inform the public about how their data privacy and security will be protected.
“Most Australians aren’t thinking about it because they haven’t been bitten by a data scandal yet, it’s not something that’s directly affected them,” she says.
“But governments should play a major guardianship or pastoral care role, and recognise that the Australian public still isn’t that knowledgeable about personal data privacy issues.
“It really should be government’s role to protect them from any breach of their data including sensitive medical data.”
A spokesman for the DHA said the agency has undertaken extensive communication to inform Australians about My Health Record and the opt-out period since the research was done.
“With over 90 per cent of Australians now having a My Health Record, it is important they are aware of how to access their record and what’s in it,” he told Government News.
“This month we are continuing our educational activity to provide information for individuals who have a My Health Record about how to make the most of their record, such as how to set extra privacy settings, or how to add their emergency contacts and any allergies to their record.
“We expect to see all Australians benefiting from the system as more information is uploaded and look forward to seeing this in the future.”
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