The platform is not providing useful data on cancer incidence and services, an inquiry has heard.
My Health Record is not being used for its intended purpose by most health providers in Australia, according to Cancer Council Australia.
Speaking to a Senate Committee investigating equity barriers for rare cancer patients, Megan Varlow, CCA’s director of cancer control policy, told members that My Health Record was not functioning as a platform for national data collection for cancer organisations, particularly given its lack of appropriate application across the health system.
“My Health Record isn’t the place that we get data for people who are living and affected by cancer,” she said.
“Most organisations, clinicians, hospitals, services are not using My Health Record in the way that it’s designed, so it’s not useful.
“We would be very supportive of increased uptake and use of My Health Record. Right across the system, from primary care through hospitals, aged care, community settings, the use of MHR in the way that it was intended will make a big difference.
“Seeing that play out in real life is continuing to be a challenge.”
While cancer organisations benefited from a wealth of data from various data collections, Ms Varlow said a national data framework was vital for streamlining and standardising these collections.
“We are lucky in that cancer is a notifiable disease in Australia,” she said.
“The cancer registries in states and territories and the clinical cancer registries that are operated by different organisations and the clinical information that lives within the different clinical trials sets, and the different electronic medical health records across the country, [are] where the data has come from.
“The idea of a national data framework that really brings all of the different data collections together and implements a national minimum dataset across the country, bringing in genomic and other collections [gathered] at an individual level – that really is what we want to see.
“That’s one of the actions of the Australian cancer plan, to really see that pulled through.”
Associate Professor Christopher Steer, medical oncologist at Albury Wodonga Regional Cancer Centre, echoed Ms Varlow’s statements, saying that My Health Record was “not the solution” for improving data collection for rare and less common cancers.
“My Health Record uptake has been patchy, certainly in the specialists sector,” he said.
“It may form part of the solution of what is a complex problem, [but] it is not the solution.”
As president of Private Cancer Physicians of Australia, Associate Professor Steer said that the organisation would not formally comment on the utility of My Health Record.
However, as a private medical oncologist practising in a regional centre, he said he did not think the platform was fit for purpose for standardising cancer data collection across Australia.
“It is a helpful tool, My Health Record, but certainly not a perfect one,” Associate Professor told committee members.
“We would look [for] more of a standardised data collection platform. I am not sure that the My Health Record is up to the task, at the moment.”
When pressed to provide more detail on ways of fixing My Health Record by Senator Louise Pratt, Associate Professor Steer said that Private Cancer Physicians of Australia would willingly contribute to efforts to improve the platform.
“We’d certainly be happy to be part of the collective effort to improve the data collection and utility in this country,” he said.