De-identified My Health Record data is yet to be shared with researchers and public health experts almost five years after the former federal government revealed controversial plans to source datasets from the digital health record by default.
The revelation comes as the government ramps up its broader public sector data sharing scheme enabled by last year’s Data Availability and Transparency Act (DATA), with the first datasets expected to be released in the second half of this year.
In May 2018, the former Coalition government released a secondary data use framework for the My Health Record to carry out plans harboured since 2015 to share de-identified data by default, unless individuals manually opted out by changing their control settings.
The data was to be shared to develop or improve health services, develop new or improved health care products or services, and develop government health policy, despite the concerns of privacy advocates over de-identifification.
Sharing data with insurers for these purposes was explicitly banned as part of legislation passed in November 2018 to strengthen privacy protections and introduce stricter penalties for system misuse, which coincided with the shift from opt-in to opt-out.
While the data sharing plans were initially planned for 2020, they were quietly pushed back a year due to problems establishing the governance arrangements necessary for the release of data.
In 2021, the plans were pushed back yet again, although this time a proof-of-concept was established to investigate establishing the Data Governance Board and other governance arrangements.
But almost two years since the proof-of-concept (PoC) began, no de-identified data has been released for research or public health purposes due to the persistent absence of governance arrangements, InnovationAus.com can reveal.
A spokesperson for the Department of Health and Aged Care confirmed that no data had been released, with My Health Record data only to be “made available to researchers or public health experts once appropriate governance arrangements are in place”.
The Data Governance Board, which would assess applications from third parties and determine what data to release, is a key mechanism that is yet to be established.
“No Data Governance Board members have been appointed. Any future appointments will be subject to government decision,” the spokesperson said.
Another critical element, a legislative rule imposing requirements on those handling My Health Record information, has also “not been made” by the Health minister, despite the PoC being tasked with exploring such a rule.
Other “processes and infrastructure required for researchers and policymakers to apply to use MHR data for research or public health purposes” also remain under development, the spokesperson told InnovationAus.com.
Delays to the My Health Record data sharing scheme come as the government continues to develop the arrangements for the Data Availability and Transparency Act, which passed into law in March 2022 with changes secured by then-Shadow Minister for Government Service Bill Shorten.
The scheme offers agencies an optional pathway to share data with each other and universities for the purposes of service delivery, policy, and research and development. My Health Record data is not permitted for release under the scheme.
While the regime has been “open for business” since July 2022, an industry briefing last month indicates that data users and custodians will only be able to “finalise arrangements to share data under the DATA Scheme” in late May.
Data sharing arrangements, including any details of the involvement of foreign nationals, are not expected to be registered until June or July, according to a roadmap of the government’s data request platform, Dataplace.
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