This is the fist of two articles addressing healthcare transformation written by Jeremy Knibbs, the founder of Medical Republic

While COVID sparked a digital health revolution around the world, My Health Record, and those who keep standing behind it, along with a local medical software industry that is small and  starved of capital, are combining to keep Australia’s digital health infrastructure in the dark ages

If you ask a senior health bureaucrat or politician in Canberra if digital health is an emerging problem in this country, they will likely laugh. 

If savvy, they will point to the introduction of telehealth during COVID-19 as a revolutionary step forward — which it likely has been and will be even more so, over time. If they are more cocky, they will point to My Health Record (MHR), and spurt out some well-rehearsed line about it being a revolutionary infrastructure project which has put Australia at the forefront of digital transformation globally.

Nothing could be further from the truth.

The MHR program, the main project overseen by the Australian Digital Health Agency (ADHA), has cost Australians more than $2 billion to date, with nothing to show for it except a series of anecdotes about it potentially saving a life here and there. For instance, where a patient’s record would not previously have been accessible, or playing a major role in helping local healthcare professionals during last year’s bushfires, and the floods before that.

Some of the stories are true, but they are all isolated. There is no body of data that shows MHR is working and delivering efficiencies to the system and public safety. The ADHA doesn’t collect such data. Or if it does, it certainly doesn’t report it.

In the small picture (which is important to the individuals involved), it’s likely MHR has been helpful to a medical professional during a crisis.

Political expediency

The big picture is a very ugly one — both for the money being spent, and for the opportunity cost to Australia being lost through the political expediency of sticking with a project that was doomed virtually from its start as a centralised, government-controlled and -run honey pot of disorganised, largely useless and hard to access data. 

The MHR is an old idea built on old technology. It hasn’t worked and it wont’ work, no matter how much more money is poured into it. It has been built and run by government, will be will be hard to dismantle because we’ve spent more than $2 billion on it already,

It started as a political show project idea from a previous Health Minister many years ago (Nicola Roxon). From its beginnings, it was clear that it was never a future-proofed technology solution. 

As a means of platforming better sharing of health data in the system, it was outdated almost from the start. Its principles and structure fly in the face of how distributed data technology, open APIs  and systems and effective secure sharing of healthcare data across the web work.  

Five years ago we had a chance to shelve the project and put digital health on a better track in this country. At that time we had already spent over $1 billion trying to get MHR off the ground but it had failed under the ADHA’s predecessor agency, the National Health Electronic Health Transition Authority (NEHTA). No-one adopted it, and the technology was groaning.

But fate intervened and a charismatic and successful digital health entrepreneur — Tim Kelsey, now COO of Pacific Knowledge Systems — was appointed as the CEO of the newly established ADHA to reboot the project. 

The new boss had attempted and failed to build a centralised government-controlled citizen health record in the UK. But he wasn’t going to fail here. He talked the talk, and he knew a lot more about digital health than any of his minders. He convinced the government to double down on the MHR. 

A big part of the plan was to force all Australians onto the record by offering them the chance to opt out of joining, rather than having to opt in. As if this somehow gave most Australians a means to better engage with a health record.

What happened was that a lot more people ended up opting out than the ADHA thought would (nearly 13 per cent of everyone eligible for a record) — something that should have been a warning sign at the time. Of the remaining population that automatically got opted in, most weren’t aware they were taking part or didn’t care. 

Not exactly the sort of patient interest and engagement you want with a project that relies almost wholly on the patient to participate in maintaining their health record. 

If the project wasn’t dead before that, it should have been then. Patients didn’t want it, didn’t care about it, or didn’t know about it. 

What’s worse, even if they did want it, it’s been hard to use and the data hasn’t been good enough.

From as far back as ten years ago it was apparent to digital health experts that web-based sharing of data using distributed open systems databases that talked to a patient directly and securely using the web would ultimately form the basis of  a patient engagement model that would work.

Patients would be able to wander between their various health providers in the system and their mobile phone would talk directly to these distributed databases, organise the data in a manner that was useful and relevant to a patient’s immediate health needs and experience, and ultimately form the most useful and secure patient-based health record.

Such systems are up and running in certain HMOs in the USA and in some Scandinavian countries. The technology exists, and it works.

Circling giants

Eighteen months ago, tech giant Apple shifted all focus in its burgeoning digital health unit to making sure its systems and devices all easily integrated to an emerging and revolutionary web sharing standard, developed originally in Australia by  former ADHA employee Grahame Grieve, called Fast Interoperability Healthcare Resources (FHIR). At the time, Apple CEO Tim Cook surprised a lot of people by announcing that in ten years time the Apple brand would only be known for one thing: health. 

At about the time Grieve developed FHIR, he shifted out of the ADHA. No wonder. His ideas were heretical at the time. Not long after he left, the US government rang and said they needed his help. Today FHIR is the major resource driving healthcare interoperability globally.

Apple is on a mission. Google isn’t far behind. Amazon will probably join in too.

These companies intend to put the power of health data directly back in the hands of the consumer — the patient. When that happens, as it will, the long-time asymmetric power imbalance in medicine — particularly that between a doctor and their patient — will start to be tested. Things will  start to transform rapidly, and probably for the better all around.

But that is not likely to happen in the near term in Australia.

Why? Because the MHR system is the government’s shining bet on digital technology for the country, for the time being. 

The government isn’t looking at alternatives and it doesn’t care. It has other problems, and certainly more immediate problems in health itself. 

Apple actually considered Australia as a perfect test bed for its ideas on mobile and distributed health technology in combination with its vast iPhone footprint. But it was scared off by the ADHA and government, who were busy doubling down on the MHR —  concept which was wholly incompatible with Apple’s ideas.

The MHR can’t work because:

  • It operates too far away from where important data exchange is taking place with patients (physically and technologically) and is as a result usually lacking vital data. Or it is publishing data that is out of date (which can present serious patient safety issues).
  • A big chunk of patients aren’t engaged with it and never will be. They have either opted out already, or they aren’t engaged and never were because they were forced to join.
  • Usability issues through very limited mobile apps mean it is hopeless to access and use today. Some patients do engage, but the system is set up in a way that is confusing for medical professionals, and allows for important data to be inaccessible.
  • It akes a huge chunk of health professionals’ vital time and Department of Health (DoH) money to keep updated (this is huge opportunity cost that is omitted from any of the MHR efficiency analyses). No one wants to update the MHR professionally, so the government pays doctors and pharmacists to do it manually. As a result, it has become ‘garbage in, garbage out’ in some cases. This just creates more issues of safety and patient utility.
  • It remains a honeypot with multiple points of access by both approved healthcare professionals and people who aren’t approved to use it but do for practical purposes. That makes it riper for large-scale hacks in the future. It’s been hacked a few times already — it will be hacked in a big way eventually.
  • Its centralised mass information architecture in no way synergises to modern cloud distributed technologies that are rapidly evolving around it, nor the increasingly demanding needs of clients in a world where networked chronic care, allied health and primary care need to start supplanting the giant shiny hospital model of healthcare in Australia. 

Can it be fixed? And if so, how? Check back Monday for part 2.

Jeremy Knibbs is the Publisher of Media Health Group, The Medical Republic and a non executive director of cloud based patient management system company, MediRecords.

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