Australian My Health Record data sharing plan sparks concerns

Published on the 16/01/2024 | Written by Heather Wright

Australian My Health Record data sharing plan sparks concerns

Data without understanding can be dangerous…

Australian federal government plans to remove a seven-day delay for all pathology and diagnostic imaging reports to be uploaded to My Health Record have prompted concerns from leading health organisations, who say the government proposal could lead to misinformation and patient distress.

The government announced its plans to require diagnostic imaging and pathology providers to upload reports to My Health Record by default in September. A seven-day delay currently in place for access to most pathology and diagnostic imaging reports shared to My Health Record, would also be removed providing access to results as soon as they are shared to My Health Record.

“There is a risk the process will become increasingly manual and burdensome.”

The plans followed the February 2023 Strengthening Medicare Taskforce report, which called for the modernisation of My Health Record to significantly increase health information available to consumers and their health care professionals, requiring sharing by default.

In May the modernisation program received $429 million over two years, including $13 million for the ‘share by default’ requirement.

Minister for Health and Aged Care, Mark Butler, says only around half of all pathology reports and just one in five diagnostic imaging reports are currently shared to My Health Record.

Currently patients must wait seven days before they can access most pathology and diagnostic imaging reports that have been shared to My Health Record. The delay was introduced in 2014 to ensure there was time for medical professionals to discuss the results with patients before they were viewed on My Health Record. Since then the rule has been removed for results for a small number of tests, including Covid.

The government says the changes will empower patients to participate in their own healthcare, make it easier for healthcare providers to coordinate care and access information and support healthcare providers to make better clinical decisions which can reduce adverse outcomes, hospital admissions and duplicate tests and increase use of evidence-based treatments and interventions.

But while leading health organisations say they are largely in support of making the reports more accessible, the removal of a seven-day delay has sparked concern, with the Australian Medical Association (AMA), Royal College of pathologists of Australasia (RCPA) and the Royal Australian College of General Practitioners (RACGP) warning against the proposal.

The RCPA and RACGP are calling for the current seven-day delay for tests not already available in real time to remain in place, with the AMA calling for strict protocols if the delay is removed.

All three organisations say some diagnostic tests need to be considered for exclusion if the removal of the seven-day rule goes ahead.

Their recommendations include anatomical pathology and cytopathology reports, which often require multidisciplinary teams to determine appropriate clinical paths, and genetic tests, which are often probabilistic and have consequences for family members, along with potential psychological impacts.

Trishe Leong, president of the RCPA, says while there is potential for improved care through the quicker provision of results and less patient anxiety, there is also potential for unintended consequences of a patient failing to return for a clinic appointment because results are within the normal range or misinterpreted.

She says patients should review results with a specialist.

“We… support the sharing of information without barriers to access, such as the seven-day rule, overall,” Associate Professor Leong says. “However, it is critical that if these delays are removed, consumers are advised to review their results with their GP or other specialist and are also provided with evidence-based information on pathology testing and contact details for general support services, such as GPs and Lifeline.

RACGP president Nicole Higgins agrees. She says the existing seven-day delay enables healthcare providers to review and schedule appropriate follow-up with patients.

“Much of the terminology entered into My Health Record is written for doctors, by doctors, and has to be understood in the context of a patient’s medical history and other health factors and conditions,” Dr Higgins says. “Patients often get good insights and find support by looking into their results, but it’s important they know what their results mean for them. That’s the value of having a usual GP.”

Higgins says if the change does go ahead, at the minimum an education campaign for patients is needed to ensure they can understand the risks of interpreting their own results.

“There will need to be clear advice in the My Health Record advising patients to discuss results with their doctor,” she adds.

The AMA, while stopping short of calling for the plan to remove the seven day delay to be dropped has noted a number of obstacles to the plan.

“Done well, it can provide patients with more information about their health status and contribute to informed discussions with their doctor,” the AMA says. “However, it also has the potential to cause unnecessary worry for patients or see patients fail to access care for their broader health needs.”

It says a survey of its members saw the majority of responses received being negative towards the proposed change.

It’s calling for strict protocols to be established around which results and records will be exempt from the changes, and that where there is uncertainty, the default setting should be to delay patient access to results by seven days.“While we recognise the planned clinical advisory approach to exploring which results will and will not be appropriate for immediate upload, we fear the complexity of such an approach may make it unworkable for service providers, referring clinicians and patients as well as software providers. There is a risk the process will become increasingly manual and burdensome.”

It has suggested that immediate clinician access via My Health Record is provided, enabling them to review data, but that patient access is delayed for seven days ‘where required’.

The RACGP submission to the Department on Health and Aged Care on the changes includes discussion of practical barriers which need to be overcome ahead of changes being adopted, including the view of some RACGP members that the My Health Record interface for viewing test results within clinical information systems is ‘clunky, hard to navigate and slow’.

“It has been noted it is particularly difficult to see each result where multiple test reports are available and that it is difficult to access images.

“Results will need to be sent to My Health Record as atomic data to support the seamless integration of reports into general practice clinical systems.

The College says once mandatory uploading of pathology and diagnostic imaging is in place, general practice systems will need to efficiently search large volumes of data to ensure ease of access to relevant reports.The government has said it will place ‘legal obligations’ on diagnostic imaging and pathology providers to upload the reports.

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