The My Health Record is the Ever Given of healthcare transformation

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

If you ask a senior health bureaucrat or politician in Canberra is 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 (and ill informed, which many are), they will point to the 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, 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 (usually) far etched anecdotes about it potentially saving a life here and there, where a patient’s record would not normally be 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 one offs. There is no data that shows the MHR is working and delivering efficiencies to the system and safety. The ADHA doesn’t collect such data. Or if they do, they certainly don’t report it.

In some cases the MHR has been helpful to a medical professional during a crisis.

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, which hasn’t worked and wont’ work no matter how much more money is poured into it. It has been built and run by government, will be hard to dismantle because we’ve spent more than $2 billion on it already, and it has been spruiked by various politicians as proof that Australia is leading the digital health race globally.

The MHR started as a political show project idea from a labor health minister many years ago (Nicola Roxon). From it’s 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 redundant up to 10 years ago. It’s 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 the country. At that time we had already spent over $1 billion trying to get if off the ground but it had failed under the ADHA’s predecessor agency, the National Health Electronic Health Transition Authority (NHETA). No one adopted it and the technology was groaning.

 But fate intervened and a charismatic and successful past digital health entrepreneur was appointed as the CEO of the newly established ADHA (the replacement agency for NEHTA) to reboot the project.

 The new boss had attempted and failed with 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, like this somehow gave most Australians a choice or 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% 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 which relies almost wholly on the patient to actively in maintain their health record.

 If the project wasn’t dead before then, it is was now. Patients didn’t want it, didn’t care about it, or didn’t know about it. And if they did, it’s been hard to use anyway and the data hasn’t been good enough.

 From as far back as 10 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 around 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 US and in some Scandinavian countries. The technology is here and it works.

 Eighteen months ago, Apple shifted all its focus in its burgeoning digital health unit to making sure its system and devices all easily integrated to an emerging and revolutionary web sharing standard, developed originally in Australia by ex ADHA employee Grahame Grieve, called Fast Interoperability Healthcare Resources (FHIR). At the same time Apple CEO Tim Cook surprised a lot of people by announcing that in 10 years time the Apple brand would only be remembered for one thing only – Health.

 It probably wasn’t coincidence that at the time Grieve developed the idea of FHIR he was more or less forced out of NEHTA, which is now the ADHA. His ideas were heretic at the time. Not long after he left NEHTA 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.

 They 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 is the government’s shining bet on digital technology for the country for the time being.

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

 Apple actually came to Australia back then as a perfect test bed for its ideas on mobile and distributed health technology in combination with its vast iphone footprint. But they were scared off by the ADHA and government who were busy doubling down on the MHR, a 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 in using never will be. They have either:
• opted out already,
• they aren’t engaged and never were because they were forced to join with ‘Opt out’ (if you don’t bother opting out, your then “in”, without caring or knowing)
• because of usability issues through very limited mobile apps it is hopeless to access and use today,
• some patients do engage but they set the system up in a way that is confusing for medical professionals, and allows for important data to be inaccessible, which can seriously compromise a patient’s safety and care.

• Takes a huge chunk of vital health professional’s time and Department of Health (DoH) money (ePIP incentives) to keep updated. ( this is huge opportunity cost that is conveniently 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 (not all, but some). 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 (it’s a lot of data entry which doctors and pharmacists don’t need or want), like pharmacy assistants, making it riper for large-scale hacks into the future. Remember, it’s not if you will get hacked, it’s when, and how badly. 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.

Currently the ADHA has a tender out to re-platform the MHR. The project is the government’s answer to a lot of the above criticisms. The new platform will provide some snazzy technology bridges for data sharing with the big central database, which will include open APIs and a cleaner FHIR integration.

But it’s still a big old data base of disorganised information in the far corner of a government server room which a patient and a tech vendor has to access back and forth for any data to flow.

Why put a giant old technology honey pot data base in the middle of the process? Why not just help patients by facilitating distributed technology to talk to a patient’s own mobile phone when its needed?

Past the embarrassment of having to mothball a $2 billion white elephant, the bureaucrats in charge would be giving up a lot of control if they let the market work as it should. They wouldn’t be running a giant and important data project, and they wouldn’t have oversight of all that important data. They would lose a lot of perceived power in guiding digital health.

A common refrain from Australians in digital health is that we are ahead of the pack globally. We like to point to the US and say, “we don’t want that mess”. Which is ironic because while the US healthcare system is a huge mess, the US government and its approach to digital health is a shining light to other governments around the world.

The reason the US government has such a pragmatic and advanced approach to digital health is most likely because their system is a mess. They have a burning platform.

In Australia we have a pretty good healthcare system. We aren’t looking over a precipice like they are in the US.

But that doesn’t mean we shouldn’t be looking their way for guidance on the future.

The US government has taken a very different approach to Australia. They don’t build or run infrastructure for digital health, like we have attempted to in Australia with the MHR. They have stepped back, taken some very deep breaths and have put in place policy and legislation to systemically guide the landscape of data sharing in the country. And they aren’t building anything or controlling anything. They are helping their vendors and healthcare providers to do it, which suits entirely how web sharing and cloud technology works.

‘Anti information blocking’ legislation, announced five years ago, has changed the US digital health system dramatically, and, because so many US health tech vendors are global vendors (Cerner, Allscript, EPIC, etc) it is starting to change the world. Most now have FHIR interfaces to all their products so some form of efficient sharing is feasible.

Information blocking is when healthcare vendors and service providers deliberately prevent healthcare data sharing in order to retain commercial advantage – literally, you can’t go across the street to another hospital because they’ll never be able to get your data and work out what’s going on.

The blocking has been at the vendor level (if I’m Cerner, two systems in two hospitals across the street from each other is better than one in money terms every day) and because of the unique private insurance system in the US, which controls much health provision, at the provider level you want to do everything to prevent losing a customer (if you leave me, your data won’t come too, and that is going to cost you a fortune as a patient).

The anti-blocking legislation came into formal effect last week in the US. The US government gave their vendors and providers five years to get ready. That is how far behind Australia is in serious digital health reform.

The government gave vendors and healthcare providers five years to prepare in order to nurse them through a very difficult period of their existence. Going from the old world of server bound locked data and information syncs, to open sharing web based technology that would meaningfully engage patients in the picture.

In Australia there has been some information blocking by vendors and healthcare providers. If you provided a GP patient management system you made it hard for the GP to take their data and move to another vendor, and if you’re a private health insurer you still try to make it a little hard for your customer to move and the easiest way to do that is have great data on your customer that your competitor can’t get.

But blocking in Australia has mostly been as a result of legacy server bound technology systems not really talking to each other. It hasn’t been deliberate and targeted like the US, where distorted funding signals forced it down a harsher path.

Blocking in Australia is in effect all done by the government now via the MHR, which is a system that is old and doesn’t share data well, and even when it’s upgraded, it will be a system that isn’t needed to share data, but which may still be forced upon us all.

In Australia the MHR is literally our Ever Given, stuck across the canal by which we are supposed to get the future of digital health. Except now, by persisting with the MHR and deciding to spend up to $300m on a big consultant such as Accenture (they had the original MHR contract for build and maintenance) to re-platform it on FHIR, the government is actually going to scuttle the MHR in the middle of the canal.

That’s going to doom significant health innovation in the country for years to come if it happens.

Blaming our high level health bureaucrats and politicians for where we find ourselves is simplistic.

The Australian healthcare system is among the best in the world still. It’s an “if it ain’t broke, don’t try to fix it”, scenario for most politicians, particularly in the febrile health policy environment which COVID has created.

But it’s a large and ugly slow boiling frog for Australian health.

By the time we recognise it’s broken the damage will be huge, and very hard to repair.

Somehow we have to at least lead the bureaucrats in the Department of Health (DoH) and the politicians stand to water. They aren’t that bad a bunch. The management of COVID has been spectacular to witness. In order to get things done they broke a lot of their own rules and pulled off some short term technology miracles (often ironically defaulting to cloud 

There is a lot of latent potential and talent in our health bureaucracy.

A good starting point for Canberra would be to look at how the US Office of National Co-ordination for Healthcare IT has been set up and has managed the facilitation of digital health in that country.

For one thing, the person in charge of this unit, Steve Posnack, reports directly to a very senior politician who reports directly to the US president. His bosses job it to wholly understand the intricacies of digital health potential for transformation of the country’s healthcare system.

The CEO of the ADHA reports to someone in the DoH, who reports to someone, who eventually reports to the secretary of the DoH, Dr Brendan Murphy, who then reports to the Health Minister, Greg Hunt, who…phew, can talk to the Prime Minister.

You can lose a lot of important communication points in a chain like this this.

It might sum up just how seriously we really take digital health in Australia.

That and the current CEO is the ex COO of the Department of Human Services, the group that brought us robodebt. This isn’t to say that this CEO isn’t a capable operator necessarily (word is she’s very smart). But it is to say that it’s not the person that would poke their head above the pulpit when they realise something is really wrong and shout, “this is broken guys”. She’s likely been sent to a third tier government agency from a top tier one for a reason.

In Australia we are being blinded to the power of digital health transformation by history and complacency. Remember healthcare is our highest government spend and the one most under pressure to blow out over time. Anything that can help us make step changes in this sector is something we should have up in lights, not stuck three tiers down in the department of health with a safe pair of hands keeping it from changing anything.

We need a functional ADHA in this country.

The other tips to be learnt from the US is facilitate digital health, don’t try to build and run it, and in that facilitation make sure you nurse your local software industry through the mammoth change that is moving from a server bound world to a cloud bound world.

The second biggest issue for Australia not moving forward in digital health is that most of our medical software industry is surviving on maintaining older server bound technology and as much as they’d love to move to the future they are facing the classic innovator’s dilemma. How do they afford to eat themselves and make sure they have a business model on the other side when they’ve architected their product for the cloud?

As a result many of these old vendors are content for now for digital health in Australia to move slowly. They don’t mind a big tanker sunk in the middle of the canal to a digital health future, as it’s giving them time to think how they make it to the other side.

One of the big issues here is that new disruptors have access to VC capital and a lot of support in terms of advisors and the like. It’s difficult for old vendors to get into this space. They can’t afford to lose money chasing a new business model that may not even exist for them.

And for those new entries that think, well, that’s life in the digital transformation game, the government needs to think hard about letting a generation of committed companies with a mass of important IP go by the wayside.

Health is unlike any other sector which has gone through digital transformation. It is hugely complex in that it involves the risk of life and all the regulation that must come with it. It also has an eclectic mix of payment systems, many government based, which are hugely complex. Many of these older vendors are important to the future of our healthcare system. They need and deserve some help.

As in the US, the Australian government needs to think carefully about protecting at least some of its older medical software vendor community and helping them and our healthcare system into the digital future, as the US government has done with their software vendor community.

But before any of this can happen, the powers that be in Canberra need someone to wake them up to the danger they are placing the future of healthcare in this country by letting digital healthcare ride along as a third tier government issue, nursing a sick old white elephant in the MHR further into the future as some sort of holding pattern.

COVID-19 has sparked a revolution around the world in digital health.

Prior to COVID it might have been possible to put up with the situation whereby digital health is misunderstood in the halls of Canberra a bit longer.

But not now.

Now the government must wake up and fix a very big problem it has or almost certainly they will be looking back and literally counting the lives they lost in our antiquated and disconnected healthcare system, by not acting earlier.

If you want to listen to Grahame Grieve, Steve Posnack, Simon Eccles from the NHS UK, and Aashima Gupta head of Google Cloud Global, and Dorota Gertig from Telstra discuss this issue on panel at an free webinar this Friday at 7.15am, CLICK HERE TO REGISTER.