I Am Not Sure Mr Butler Has A Clue About Health Information Management And The Utility Of The myHR!

This appeared last week:

Minister for Health and Aged Care, speech - 17 October 2024

Read Minister Butler's speech at the Victorian Healthcare Week 2024: Digital Healthcare

The Hon Mark Butler MP
Minister for Health and Aged Care

Media event date:17 October 2024

Date published:17 October 2024

Media type: Transcript

Audience: General public

I would like to acknowledge the traditional custodians of the lands on which we meet, the Wurundjeri Woi-wurrung and Bunurong peoples of the Kulin nation.

I pay my respects to Elders past and present.

Today I’d like to give you a glimpse into the Government’s vision for how upgraded digital health systems will underpin a stronger Medicare and better patient care.

In the past year, our investments in digital health, along with a collaborative engagement with clinicians and software providers, are driving an upgrade to My Health Record that will improve patient care and shift provider behaviour.

Because in Medicare's 40th year, a quiet revolution is underway in digital health, both in approach and in outcome, after a decade of inaction.

Since Medicare was introduced 40 years ago, technology has advanced immeasurably.

Back in 1984, "cutting edge" meant a Sony Walkman in your pocket, an Apple Macintosh on your desk, and a fax machine in your office.

Walk into so many health settings today, you'll find a smartphone in your pocket, a fitness tracker on your wrist, and in the corner where the fax machine used to sit is another fax machine.

That's right: a technology first invented in 1964 - 20 years before Medicare - is still frustratingly, maddeningly, all too common in Australian healthcare settings.

Why is this still the case?

When we came to government, My Health Record was in dire need of an upgrade.

It was still using the old PDF format that Labor installed when we were last in government.

It was cutting edge then, but it is beyond clunky now.

For almost ten years, nothing was done to upgrade the technology that underpinned it.

While the broader economy went through a digital revolution that reshaped industries, My Health Record just sat there, gathering dust.

Without investment, My Health Record remained little more than a shoebox of PDFs - the kind of shoebox every accountant has nightmares about.

You know the one: it came with your running shoes about ten years ago and now is stuffed to the brim with receipts.

Just hundreds and hundreds and hundreds of receipts.

When we came to Government, we discovered that it wasn’t even funded beyond June 30 last year.

On July 1, My Health Record was due to be switched off.

Unplugged. Gone.

So too, the Digital Health Agency.

Lucky we never sold that fax machine, eh?

For the past 10 years, Australia has not kept pace with international best practice to create consistent health information capture and exchange standards.

Instead of playing a coordinating role to allow a patient’s health information to follow them throughout the health system and their life, the former government vacated the space.

Without clear leadership, clinical information systems were built using licenced frameworks that didn't talk to each other.

With many different systems across public hospitals, private hospitals, aged care facilities, general practices and allied health clinics, patient data became effectively siloed behind a wall of proprietary frameworks.

Unsurprisingly, there isn’t much confidence in such an outdated system.

In the most recent Health of the Nation survey by the Royal College of General Practitioners, 31% of GPs said they rarely, or never, use My Health Record.

Even fewer specialists use it: half of them haven’t even registered with it.

Dr Ramya Raman explained to me how frustrating using My Health Record can be, as a GP.

She said - quote - "Every blood test is a separate file. Every scan is a separate file. They're just labelled 'pathology' and it opens up in a window. And the most frustrating thing about it is: you close one window, the whole thing closes".

We have to do better.

There is no reason why Australia can't make My Health Record interoperable with the clinical systems that Dr Raman and other healthcare providers actually use.
 
That clinical software should be able to draw upon the data in My Health Record directly, and publish back to it seamlessly, without any additional data entry required of the healthcare practitioner.

I said as much at the National Press Club in May last year.

And if a patient gets a diagnostic scan or pathology test, then those results should be uploaded.

A week after that Press Club speech, in the 2023 Budget, we announced almost $1.1 billion in new funding to modernise the digital health infrastructure and upgrade My Health Record to a data rich platform.

A bit over one year on, and Australia is seeing the most substantial digital health reforms in more than a decade, across three major areas:

• 1) standards
• 2) medicines
• 3) tests and scans.

First, standards...

Last year, we funded the CSIRO to lead a partnership across the digital health sector called the “Sparked” initiative to deliver a national set of data and exchange standards.

So that the clinical software a health professional uses stores health data according to common standards, enabling sharing across platforms, practices and professional disciplines.

The standards will use the Fast Healthcare Interoperability Resources  framework – or FHIR – that is used widely in the United States, UK and Europe.

The “Sparked” initiative launched in August last year with all Australian governments as founding partners and more than 500 participants comprising technology vendors, provider organisations, consumers, peak bodies and health practitioners.

The first goal was to develop standards for core patient health information covering Procedures, Allergies, Medicines, Problems, Immunisations and Results.

In just 10 months, that goal was achieved.

In June this year, Australia’s first ever national information sharing standard was published and can now be built into clinical systems.

This represents more progress in 10 months than in all of the previous 10 years, combined.

The strength of “Sparked” lies in its bottom-up process of community consultation and consensus, with more than 500 participants rallying  each other toward a common goal.

Now, “Sparked” is looking at how to digitise Chronic Condition Management Plans, capture the reason a patient presents for healthcare, and develop the additional data-sharing attributes needed for a national patient summary record.

This is just one small part of the revolution in digital standards underway across the health system.

Work is also underway to develop a national directory of healthcare providers.

To do that, we’re enhancing the national healthcare identifiers, so that whatever the health setting, all jurisdictions can accurately identify individuals, healthcare providers and organisations.

We’re also working hard with our state and territory colleagues to drive the nationally consistent and timely supply of quality hospital discharge summaries into primary care.

This has been a recurring critical gap that causes needless hospital readmissions and poor health outcomes.

It has been called out time and again through numerous reviews, including the Aged Care Royal Commission and the mid-term review of the National Health Reform Agreement.

Shared national standards will enable My Health Record to become the data-rich platform that Australia needs.

And a few weeks ago, the Digital Health Agency put out a large tender to do just that: to fundamentally transform the interoperability capability of My Health Record.

This is a critical piece of work that will enable clinicians and consumers to discover and access healthcare information where and when it is needed, in a standardised structured format.

The second major area of digital revolution underway is in medicines.

With electronic prescriptions, we have transitioned to a single national prescription delivery service, streamlining the delivery of more than 300 million prescriptions each year between doctors and pharmacists.

More than 100,000 prescribers across the country already use e-Prescriptions, and after extensive engagement across the health system, we are now on track to introduce them to public hospitals.

Each year, a quarter of a million hospital admissions result from medication-related problems and half of them are considered preventable.

We’re working on a framework to enable the rollout of electronic medication charts to more settings beyond the successful roll out in aged care, where nearly 80 percent of facilities have received a grant to adopt them.

The third, and perhaps the biggest, revolution underway in digital health is in the availability of scans and tests in My Health Record.

All states and territories are now sharing pathology and diagnostic imaging reports to My Health Record, with most uploading more than 75 per cent of all tests and scans, and most on track to share 100 per cent of them in coming months.

By the end of the year, for the first time, client support plans will be able to be shared from My Aged Care to My Health Record.

Patients expect their diagnostic scans and pathology tests to be uploaded.

This only happens by exception. It is not the rule.

At the National Press Club in May last year, I said that I intended to make it the rule.

Since that announcement, the number of private radiology clinics connected to My Health Record has more than doubled.

Australia’s largest private radiology provider, I-MED has started sharing by default from all their Western Sydney clinics.

In the ACT and southern New South Wales, Capital Pathology is sharing by default from every one of their clinics.

The third largest private radiology provider, Lumus, is the first to share by default nationally.
 
And since one private pathology provider in Western Australia started sharing by default earlier this year, they now field around 150 fewer calls per day from patients looking for test results.

Over 10 million pathology and nearly 1 million diagnostic imaging reports are being uploaded each month.

In May last year, just one in five diagnostic imaging reports were being sent to My Health Record.

A year later, and one in three reports are now being uploaded.

While this is an improvement, it is still too low and too slow.

Which is why I will soon introduce legislation that will mandate “sharing by default” for all tests and scans in near real-time. 

To enable faster access, I am looking to remove the 7-day delay that prevents patients from seeing their results sooner. 

While near real-time access will be the new standard, in some cases a clinically appropriate delay may remain if appropriate.

Before agreeing an approach, I will consider advice from the Clinical Reference Group, co-chaired by former AMA President Dr Steve Hambleton and Conjoint Associate Professor Carolyn Hullick, the Chief Medical Officer at the Commission on Safety and Quality in Health.

The Clinical Reference Group will provide me with strategic and clinical advice to ensure implementation is aligned with consumer needs and preferences, and healthcare provider clinical workflows.

Test results and scans belong to patients, not providers, and they need to be shared to a patients' My Health Record.

To show that we're serious, the laws will include consequences for companies that do not share.

And let’s be clear about why our government is so committed to this.

Yes, it will make healthcare professionals’ lives easier, by helping them to be more efficient and effective.

Yes, there will be flow on benefits across the system, helping to ensure that every precious dollar in the Medicare system goes to patient care.

Sure, those are important.

But the reason we are driving so hard toward that digital future is not provider benefit or system benefit, but patient benefit.

Patient benefit is – and always will be – our North Star.

Patients find this so frustrating, because every lost test result means another day off work, another waiting room, another procedure and yet another gap fee.

Patients desire and deserve access to their own health data, and agency over how it is used and shared.
 
Digital health technologies should empower patients to monitor and take charge of their health and wellbeing, so they can interact confidently with healthcare providers and build their health literacy.

It moves patients from the periphery of a too-often fragmented system, and puts patients right of the heart of a better connected and more personalised health system.

This is what drives our government’s efforts.

And it’s why the “sharing by default” framework will ensure that pathology and diagnostic imaging companies that do not upload the results of a test or scan will not get a Medicare benefit for that test or scan.

Withhold a patient's results and we will withhold the Medicare payment.

It's as simple as that.

This is not a drastic position for a government to take.

In the United States, for instance, the 21st Century Cures Act requires the portability of health records with open access for consumers to their health information.

Under the legislation, providers that do not have modern cloud-based systems in place to enable this sharing could even be sent to jail.

While our health systems are different, since the U.S. laws were introduced in 2016, study after study has shown a range of benefits to consumers and health providers after the removal of delays to patients viewing their results.

The "sharing by default" legislation will be introduced to Parliament next month.

I'd like the laws to be passed and in place by the middle of next year.

It's clear that we cannot leave patients to rely on the benevolence of private providers.
 
In the financial year to June 2023, Australia's second largest private pathology provider, Healius, had a 25 per cent market share and received almost a billion dollars in Medicare benefits.

In August of that year, Healius was uploading over 800,000 pathology reports a week to My Health Record.

The following month, on the 11th of September, we released for public consultation our intent that pathology companies would share by default by June, with a legal obligation by the end of this year.

No sooner had we released that proposal for public consultation, that very same day, Healius wrote to the Department of Health and Aged Care to say that it would imminently suspend the upload of pathology reports.
 
Despite previously having received close to half a million dollars from the Digital Health Agency to subsidise its connection into My Health Record, Healius stopped uploading pathology reports less than 24 hours later.

With each week that passed, another 800 thousand patient results were not uploaded to My Health Record.

Letters were sent, meetings were sought, and then held, without resolution.

Weeks went by, and still Healius hadn’t resumed uploading patient test results.

Patients were starting to ask the Digital Health Agency why their results weren't in My Health Record.

On 27 November, in response to questions from media and after making no progress convincing the company to reverse its decision, I went public with my deep disappointment that Healius was withholding patient data.

Thankfully, 12 weeks after Healius stopped uploading pathology results, on the 5th of the December, it finally resumed.

By that point, an estimated 10 million test results were missing from My Health Record.

10 million test results that will never be readily accessible to patients or their health providers.

It’s impossible to determine if any of those missing results have since led to additional or duplicate tests.

If even 1 in 20 of those 10 million results need to be re-ordered, then patients and the health system are on the hook for another half a million tests.

Half a million needless Medicare payments.

Half a million times that patients have to take leave from work to give up their time and, in all likelihood, take yet another blood test.

Half a million re-ordered tests may be a conservative estimate.

Studies from the UK’s National Health Service indicate that up to a quarter of all pathology requests may be duplicates or unnecessary.

Now credit where credit is due.

Since it resumed uploading in December last year, Healius has consistently been uploading pathology reports to My Health Record by default, with uploads continuing to grow.

Under its new management, Healius has engaged very constructively in the government's digital health reforms and upgrades to My Health Record.

The government has had no issues with Healius since that time.

However, to be perfectly frank, patients should not have to rely on the goodwill or good management of private providers to be able to access their own health data.

Companies that have built their business model on channeling and control of a patient's health data will have to find a new way to drive profit margins for shareholders.

Let me be clear: withhold a patient's results and we will withhold the Medicare payment.

As well as being better for consumers, a sharing by default scheme that enables patients to access their information in near real time, is also better for the bottom line for healthcare providers.

Because every dollar that goes to a needless or duplicate test or scan, is a dollar that doesn't fund lifesaving medicines or our hard-working doctors, nurses and health professionals.

Every minute a GP doesn't spend searching through My Health Record for a result that may or may not be stuffed into the PDF shoebox, is a minute they can spend with a patient.

Every minute a practice nurse doesn't have to spend manually entering a patient's data into their My Health Record, is a minute that they could be administering a childhood vaccination.

Every minute a practice manager isn't held up on a phone call with a patient chasing up their results, is a minute that another patient doesn't have to wait on hold to make an appointment.

The Productivity Commission estimates more than $5 billion a year could be saved by reforming Australia's digital health infrastructure.

Beyond the savings, it is - quite simply - what patients expect and deserve.

People now routinely view their test results in My Health Record more often than they did at the absolute peak of the COVID-19 pandemic, when they were viewing 700,000 reports each week.
 
Near-real time availability will see an uplift of digital health literacy, better informed consumers and better management and care coordination of chronic conditions.

Just what a stronger Medicare needs to be able to deliver for the patient profile of 21st century Australia.

A bit over a year after the announcement of $1.1 billion in funding, this quiet revolution in digital health is delivering more progress in a single year than in the previous ten years, combined.

By driving revolutionary changes in standards, medications, and tests and scans, a modernised and upgraded digital health infrastructure will deliver a My Health Record that is data-rich, real-time and complete.

Consumers will be able to trust the system, access their information at all times, and won't have to repeat their medical history every time they see a clinician.

By the time Medicare reaches its next milestone birthday, we can confidently expect that the humble fax machine will no longer clutter the offices of health settings.

Like the Sony Walkman or Apple Macintosh, the fax machine will finally become little more than a museum relic.

I'm sure I speak for patients everywhere when I say: that day can't come soon enough.

Thank you.

Here is the link:

https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/minister-for-health-and-aged-care-speech-17-october-2024?language=en

It really is bizarre that Mr Butler thinks that the data for patient care is all up there somewhere and patients can just get on with downloading it.

I have just had a look at myHealthRecord – given I have had some admissions and treatment in the last few months.

There is a collection of useless junk in the record and zero clinically relevant that I can detect but an amazing list of things done to me – all of which is a variety of item numbers!

The record is a collection of “data junk” and is non-sensical and useless.

The fiasco continues and the myHR is as useless as ever – despite what the Minister says!

David.