Twelve years after the introduction of My Health Record, Australians are struggling to access their medical information, while clinicians report frustrating difficulties uploading and finding vital health details such as pathology results and diagnostic tests.
The latest annual report from the Australian Digital Health Agency shows just 2.69 million of the 23 million people registered for a My Health Record accessed it in 2020-21. While this is an increase of 14% from the previous year, it was largely driven by people accessing Covid-19 vaccination records and Covid-19 test results.
The chief executive of the Consumers Health Forum (CHF), Leanne Wells, said while upgrades to My Health Record to include access to vaccination information and Advanced Care Plans were welcome, day-to-day health records from consultations, emergency department visits, hospital discharges, pathology, and diagnostic testing were still missing from many records. This is despite more than $2bn being spent on the system since it launched in 2012.
“These items represent the vital health information that should be shared between health service providers, however, consumers report that their expectations are not met when these are not visible, or are only visible on supply from some, but not all, providers,” Wells said.
“CHF research on consumer experiences with digital health … reveals that consumers have high levels of willingness to share their health information with and between health care providers.
“However, the lack of sharing and access to relevant health information causes frustration and concerns about safety and quality of care.”
Wells said health providers were simply not uploading these documents. She said uploading records was not always straightforward and clinicians, especially GPs, had consistently raised issues about the system design.
A PhD candidate with Monash University’s school of Public Health and Preventive Medicine, Alex Mullins, led research into physicians’ and pharmacists’ use of My Health Record in the emergency department.
“From my research we know that My Health Record is a valuable tool for pharmacists,” she said.
“Over 18% of patients who present to the ED are having their record accessed by pharmacists.
“Clinicians are seeing benefits in using the system, which may explain why there has been a significant increase in use by ED doctors, nurses and pharmacists over the past two years.”
But overall use is still low, she found. Mullins’ analysis of hospital log data revealed less than 2% of patients who present to the emergency have their My Health Record accessed by a doctor or nurse.
Challenges to date have included many clinicians failing to see benefits of My Health Record use.
Mullins said some clinicians need further training on accessing the records, and that incomplete information in the patient record also meant the information was not always useful.
When outdated or irrelevant information is included in the record, this could also lead to trust issues, Mullins said. Some hospitals also have their own record systems which clinicians find easier to access, she said.
“Areas for improvement include both technical improvements to the system itself … and more data flowing into the system, and improvements with respect to clinician engagement with the system,” Mullins said.
“High quality data that is accessible and fit for purpose is vital and the whole healthcare ecosystem plays a role in improving this.”
Steven White has worked in digital health for almost two decades, so he “signed up as soon as I was able” to My Health Record.
He has chronic health conditions for which he often needs blood tests and hospital visits.
He has worked over time to help make My Health Record more accessible for clinicians in a major public health service.
Commenting on his experience as a patient and not on behalf of his employer, White said despite being a patient at each of the three biggest health services in Melbourne, “the amount of documentation that gets uploaded to My Health Record is minimal”.
“Most consumers, myself included, had hoped that My Health Record would eventually become a comprehensive health record, but I doubt that’s ever going to be the case,” he said.
“Just getting a discharge summary to upload to My Health Record is something really tricky.
“I’ve always felt that My Health Record is kind of like Uber. If there was only one driver for Uber, and only a few customers, it would be essentially useless.
“It’s only once there’s a critical mass of both providers and consumers really making a use of it that it can be useful,” he said.
“That, and having a good digital design.”