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USYD commits to no direct use of My Health Record

Researchers at the University will be able to independently apply for data.

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A spokesperson for the University of Sydney has indicated to Honi Soit that the University will not be directly applying for access to health data stored as part of the centralised My Health Record program.

My Health Record is a government initiative that seeks to create a centralised healthcare file for all Australian citizens. It is designed so health practitioners can easily review all of a patient’s medical history, and will store records of your “allergies, medical conditions, previous or current medication, test results and anything else that is uploaded by your doctor”. The information will be stored until 30 years after a patient’s death.

The bulk data from the system will be made available in an aggregated and anonymised form for ‘secondary use’, including research, policy, and planning. These uses are governed by a framework released by the Department of Health. The framework notes that the first release of such data is expected to occur in 2020.

The University spokesperson told Honi that “at this stage, we do not intend to apply for ‘secondary use’ access.”

Honi understands that this means the University will not make any blanket applications for research access. But individual researchers at USyd may apply for access: “We are committed to conducting and supporting research to improve health outcomes for Australian and global citizens. As such, our researchers may apply for access to the data, which would be de-identified.

“[These] researchers would act within the guidelines provided by government when applying for access.”

The ‘secondary use’ framework notes that identified data may be shared “with the consent of the healthcare recipient”. The ABC reports that “currently, users of the platform can tick a box on the web portal to opt out of secondary use”.

The spokesperson confirmed to Honi that the University would not use any identified data “for services such as Disability Services, Special Consideration requests, or other similar uses”.

“Further, for students who utilise the University Health Service (UHS), My Health Record information is only accessible within UHS. If a student and client of the UHS requires information to be shared with the special consideration or disability services teams, separate documentation is required.”

The My Health Record program has been assigned to the newly created Australian Digital Health Agency (ADHA). Honorary Associate Professor Meredith Makeham, part of USyd’s $13 million Research in Implementation Science and eHealth (RISe) Group, is Chief Medical Advisor to the ADHA.

The Guardian reports that “My Health Record has the backing of all of Australia’s peak health bodies, including the Australian Medical Association, the Royal College of Australian GPs, the Pharmacy Guild of Australia and others.” A piece by two Health scholars in The Conversation explains how the program will save the industry $300 million over three years, and that accepting the status quo of decentralised recordkeeping has its own risks.

Meanwhile, criticisms of the program have been far-reaching. There are concerns about the possible circulation of data on patients with stigmatised conditions or in vulnerable communities. Further, the Queensland Police Union has warned its members that police will have extensive access, and privacy experts have criticised the principle of centralised records altogether. Ralph Holz, an expert in cybersecurity at USyd, told The Guardian that  My Health Record’s centralisation could be a security issue.

“It would be safe to assume that some attack is going to be successful. […] There will be some data loss. That is inevitable.” Australians have until 15 October to opt-out of the scheme, which can be done at myhealthrecord.gov.au.