Federal government health authorities have downplayed concerns about the My Health Record (MHR) scheme in the wake of revelations that around 900,000 Australians have opted out of the scheme in the first half of the high-profile opt-out campaign.
Anyone not opting out by that date will automatically have a record created for them, in an effort designed to kickstart the transition to electronic healthcare records.
More than 6.1m records have so far been created under the MHR program, whose rollout is being coordinated by the Australian Digital Health Agency (ADHA).
ADHA CEO Tim Kelsey was optimistic about the results, telling a Senate committee this month that the opt-out figures – which represent just over 3% of a total Medicare-eligible population of around 28 million – are “significantly lower than the original forecast we had anticipated and in line with other international examples”.
Addressing privacy concerns
Some 830 public hospitals, 178 private hospitals, and 287 specialist organisations had registered to use MHR since the scheme was introduced, with all public hospitals outside of South Australia and Victoria expected to be connected to the system by year’s end.
MHR will enable the aggregation and seamless exchange of patients’ healthcare records between participating organisations, in a program intended to boost both the efficiency and accuracy of healthcare delivery.
The aggregation of personal health data has made the program a lightning-rod for controversy, with privacy advocates decrying its risks and health minister Greg Hunt forced to introduce new legislation to tighten controls over which government agencies could potentially access the data.
Noting the value of offering Australians the “important mitigation” of having their records permanently deleted, Australian Information Commissioner and Privacy Commissioner Angelene Falk told the committee that the new controls – introduced as the My Health Records Amendment (Strengthening Privacy) Bill 2018 – “are important safeguards that allow individuals to have access to their own health information and to choose which providers involved in their healthcare have access.”
“The opt-out period has occurred in the context of a heightened community awareness and concern generally about the handling of personal information,” she said.
“The community in general is seeking greater clarity as to how their personal information is collected and used.”
Despite those anecdotal concerns, just 21,000 MHR users had actively set a PIN to control access to their MHR, while 136,644 users had set up their accounts to receive an email or SMS when their data is accessed.
Leaked documents recently exposed internal deliberations around the security of the MHR, including ADHA’s rejection of the suggestion that MHR records be set up with default PINs because it would “effectively render the system opt-in”.
An issue of awareness
Committee members lingered on the question of how many Australians are actually aware of MHR and the current opt-out period.
A “comprehensive” $5.454m radio, newspaper, TV and social-media campaign had, Kelsey said, driven “national awareness” of the MHR from approximately 40% when the current opt-out period began, to 87% as at the end of August.
The campaign explicitly excluded household letters and maildrops because they “actually don’t work and were seen negatively” by participants, first assistant secretary for the Department of Health’s Portfolio Strategies Division Tania Rishniw added.
What Kelsey termed “more mature levels of awareness” – the proportion of people who are aware that they will have an MHR record created for them if they don’t opt out – had increased from 16% before the current program to 59% as of early September.
Pressed by Greens senator Richard Di Natale as to how the agency would address the approximately 40% of Australians that “don’t even know that [opt-out] is happening”, Kelsey said the observed level of growth is “fairly unprecedented in terms of marketing awareness” and that the agency “will absolutely be doing as much as we can” to continue building awareness of the program.