As the Australian Digital Health Agency endeavours to improve the usefulness of its My Health Record, a flurry of announcements has celebrated the signing of agreements with pathology laboratories, pharmacy groups and diagnostic imaging practices for the sharing of clinical records.
Following recent criticism of the incomplete information contained within My Health Record and the impact on its clinical value, the ADHA’s efforts to populate the national repository of Australians’ health information with clinically relevant documents have kicked into gear.
But the uploading of people’s most private and consequential personal information onto a Federal Government server is causing concern for the lack of a true opt-out function and little communication with the public.
According to the Australian Privacy Foundation’s Dr Bernard Robertson-Dunn, the Federal Government is attempting to “quietly force” the system on as many Australians as possible.
“This is not informed consent; this is more like a sneaky, secretive back-door data grab,” Robertson-Dunn said.
“There is no valid clinical reason for why your medical data should be shared with the Federal Government. The only people who should see it are you and your healthcare professionals.”
Concern centres on the moves by the ADHA to create a My Health Record for every Australian by the end of 2018. The agency claims people can choose to opt-out, but the My Health Record website states uploaded documents remain online.
“No document is ever actually deleted from the My Health Record system,” the website says.
“However, an individual has the ability to remove from view any document in its entirety from their My Health Record. Individuals can subsequently restore documents they have removed from view.”
Within its announcements over the last week, the ADHA has claimed that by the end of 2018 over 95 per cent of diagnostic imaging practices will be able to upload patient reports to the My Health Record system, with software companies in talks to build connectivity into their systems.
Every community pharmacy software vendor has also now signed on to connect to the My Health Record system, with Chemist Warehouse, which represents 30 per cent of the market, and the 1000 pharmacy-strong Corum agreeing to connect in 2018.
Meanwhile, pathology companies including Primary Health Care and Australian Clinical Labs, as well as seven other software vendors and laboratories have signed agreements with the ADHA to connect to My Health Record, joining Sonic Healthcare.
ADHA CEO Tim Kelsey said these agreements would lead to improved health benefits for the population.
“The largest diagnostic organisations in Australia have now agreed to share their test reports with Australian consumers,” Kelsey said.
“We are working to deliver a My Health Record for all Australians next year, unless they choose not to have one. Health consumers will benefit from this significant commitment by the pathology industry and their software partners.”
The pathology agreements – which include those with Cirdan, Genome.One, Infinity Path, McCauley Software, Medical-Objects, MyHealthTest and the Victorian Cytology Service – suggest the information to be uploaded could also contain people’s genomic information: an individual’s complete physical roadmap.
For the Australian Privacy Foundation’s Robertson-Dunn, the Federal Government is “railroading” people into giving up their medical treatment data without explaining the future risks, such as information ending up in the possession of health insurers.
“Perhaps they hope they can get away with it before anyone catches on. Once they've got your data, it will be too late to get back control,” he said.
More than 5.3 million people have a My Health Record, with a new one created every 38 seconds.