This appeared last week:
07 February 2024
My Health Record ‘not useful’: Cancer Council
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.
More here:
https://www.medicalrepublic.com.au/my-health-record-not-useful-cancer-council/104901
It really is a pity that the Government will not accept that the myHR is as useful as ‘tits on a bull’ and go back to the clinical community to get help in designing a shared system that would be valuable and useful in supporting clinical practice while facilitating improved clinical data sharing and the full range of possible uses to which digital clinical information can now be used.
It is not beyond the wit of man to design and implement a true national system that should and could deliver real benefits - but the design and scope of this system will need to be user / clinician driven.
I wonder how long we are going to wait for the leadership needed to throw out what is done now and move on to design and implement something that will be both useful and used?
Will I see it in my fast running out lifetime? I am not sure at all!
David.
3 comments:
My Health Record was never implemented the way it was designed. It was supposed to reduce fragmented health data by accessing existing repositories. That required solving the interoperability problem which they couldn't do and still can't do. All they did was create a central repository for a few summaries and a whole load of meaningless (i.e. they don't relate to anything else in My Health Record) est results.
The re-platforming and the supposed Modernisation project won't do it either. All the 2020 RFT will do is externalise the front end interfaces. No changes to My Health Record itself. But they will be able to populate new backend databases for research and policy analysis.
This is what the Tender document says about the future state:
"The future state concept continues a role for the My Health Record System, but aims to uplift national digital health infrastructure capabilities (owned or operated by the Agency or registered repositories) by supporting increased interoperability within the healthcare sector, encouraging integrated and innovative solutions, ensuring scalability to meet increased throughput/storage requirements and forward-looking secondary use of data to improve the delivery of healthcare. It provides opportunities to enhance healthcare provider participation, support public policy initiatives and deliver key benefits for healthcare."
This is pretty much what they said about the original PCEHR. Will they achieve it? Don't hold your breath.
On the one hand the Cancer Council criticise the My Health Record pointing out why it is useless.
THEN, in the next breath they state how they support the MHR! thereby completely contradicting their earlier position.
Little wonder indeed that the government embraces the latter as justification for throwing more money at the MHR!!!
The major requirement for eHealth is good quality data that is interoperable and everything above this is built on top of this layer and will not function without good data. My Health Record has ignored the need for good data and in fact has taken good quality pathology data and turned it into an opaque pdf! It's a forgone conclusion that it can never work without decent data, which needs to be as atomic as possible. I guess ASIO possibly have the resources to read hundreds of pdfs if they want to spy on an individual but your GP or specialist do not, so the system is essentially useless for patient care.
Returning to supporting the creation of high quality, compliant atomic data and aligning the terminology to clinically relevant usage is what a national authority should be doing. Any attempt to build castles in the air is doomed to failure and every attempt has sunk into the quicksand of opaque non compliant, non atomic data. There is no hope of building a stable structure on quicksand. It testifies to the understanding, or lack there of, inside the health department that they have not figured this out yet. A few individuals have but they are quickly moved on as troublemakers. Maybe all the effort is just to allow the government to spy on individuals health data, without any advantage to the patient? The Victorian plans to upload all health data to the government with no opt out is would support this conjecture, but somehow I doubt their ability to even achieve a reliable repository of opaque pdfs?
Its a mess that is not fixable without cancelling the whole mess and doing what governments should have done: Insist of reliable and compliant data, and terminology, that passes a compliance check. If you build a solid foundation lots of people could build useful structures on top.
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