21st-Century Cures Act Down Under

14 minute read


If our First Assistant Secretary of Digital Health achieves this one big thing, he could bring massive new value to the system and patients.


You’d be forgiven for missing it, but we may well be in the midst of the most important health reform in Australia since Medicare.

If you attended last Wednesday’s major MedInfo23 plenary with Australian Digital Health Agency CEO Amanda Cattermole and the First Assistant Secretary of Digital Health with the DoHAC, Daniel McCabe, you could easily have blinked and missed what was going on between the lines of their rehearsed and prim presentation on the future of digital health and the release of the ADHA’s National Healthcare Interoperability Plan 2023-2028.

The session was like so many other polished and necessarily politically correct sessions delivered in the past by ADHA chiefs and high-level government policy apparatchiks in the past five years:

“Sure we’ve had a few hiccups with the My Health Record, but look at all the good things, not the bad” – a tried and trusted past technique of the ADHA – “and now look at what we are planning! Can you believe it?!”

If anyone was listening (it didn’t feel like many were) then the pitch was way too “nothing to see but great work in the past leading to great work and great policy into the future”.

Ms Cattermole, who according to those around her is a highly accomplished administrator and bureaucrat, has suffered from not having any background or expertise in digital health, and from following a charismatic and eloquently spoken past CEO, who ended up killing a lot of sector trust by pushing an agenda that ended up pretty messy for everyone.

The irony is that, slowly but surely, there appears to be a lot of great work and policy being done at the moment between DoHAC, the ADHA and the CSIRO in digital health.

Ms Cattermole hasn’t been driving that work or leading it, but she has been adapting and learning, and in that manner, perhaps her admin skills will end up a blessing here.

Of course, it’s what you do not what you say you are going to do that counts, but at least Mr McCabe and Ms Cattermole are now saying they are going to do a whole lot of new and very sensible, co-ordinated things in a line to fix the mess we find ourselves in.

Part of their talk was announcing the final form of the Agency’s National Healthcare Interoperability Plan which you can read here. We’ve looked at the big-ticket items among the 44 actions and talked to an industry expert in another story. It’s not that different from the draft of the Plan and it has 44 key actions embedded under five major action areas, which at first feels daunting and dense.

But unlike previous plans from the Agency, which tended to have quite high-level, fluffy and often misguided goals (see the last National Digital Health Strategy) this plan has detail and targets which point to very obvious problems with Australia’s current digital health set-up.

Probably most importantly, the plan aims to co-ordinate the rapid development and introduction of a standards roadmap for data sharing and to move the system to what Mr McCabe and Ms Cattermole are calling “sharing by default”.

Mind you, 44 feels like too many things to try to do – most are assigned to the ADHA – within the timeframes given. Who would believe the ADHA could do this given how spectacularly it missed nearly all the goals of the last National Digital Health Strategy?

Some of the 44 action plans are diffuse and confusing, and likely won’t shift the dial on much.

When I ran the local arm of a big global corporate I only ever tried to get my team to do three things at a time, no matter how my overseas masters insisted I do 50 things at once. We rarely every succeeded at getting three done. But we often got the first and second done. And that usually created change and movement off which we could work.

Behind the scenes of what Daniel McCabe is attempting, you can narrow all 44 objectives in this plan down to just one big hairy one he is trying for.

If he succeeds, this one objective might fundamentally transform our health system for providers and patients in a manner, as or more impactful than Medicare.

That objective is to introduce new policy, backed by legislation, that will force alignment of healthcare technology platforms across the country and align privacy rules, so healthcare data can be shared seamlessly, in real time, between providers and their patients, meaningfully.

If you step back from this objective it looks a lot like the 21st Century Cures Act, Australia style.

Only two years ago, such an idea was anathema to much of the digital health community and, perhaps more importantly, to key politicians.

Apart from a general horror that most Australian health reformers express when you suggest we should be looking to the US for health reform, the fundamental strategy that has underpinned the My Health Record (MHR) for the last 10 years, and hence our digital health strategy, is largely the opposite in technical terms of the strategy that underpins the US 21st Century Cures Act.

In those two years, somehow Mr McCabe has managed to reconcile our continuing obsession and need politically to keep the MHR front and centre of our branding to the public about digital health reform, with the very practical need to consider more options, in particular, the need to embrace modern web-based distributed data-sharing technologies such as open APIs and FHIR.

Mr McCabe has quietly done what a few years ago a few people thought was impossible: he has managed some sort of alignment and single sense of purpose between the most important politicians, our increasingly stranded and underfunded technology sector, a confused, deskilled and directionless ADHA (after Tim Kelsey left so did the rest of what was a reasonably competent management team), and, most importantly, a new and relatively naïve federal government.

The greatest trick Mr McCabe has pulled off is keeping the MHR in place while introducing something that is the near antithesis of it.

DoHAC is spending a lot of time talking to the US Office of the National Co-ordinator of Health Information Technology about how they pulled off the 21st Century Cures Act without collapsing the medical tech sector or driving clinicians and providers mad with the sort of issues of complexity and added workload that has a occurred as a result of the so-called EMR revolution in that country.

Part of Mr McCabe’s secret is that he does a lot of listening and consultation. He’s been doing it for a few years now so quite a few people are starting to trust that he is listening and is going to try to look after all the stakeholders that might normally get hurt in such a radical transformation.

A lot flows from Mr McCabe’s one thing (if you believe it really can be boiled down to just one thing):

  • The My Health Record is repositioned in the picture to optimise its very useful features moving forward (a privacy legislative framework for instance) but it is definitely moving over now to accommodate a distributed standards-driven data-sharing model alongside it. Mr McCabe admits openly now that the MHR is not the whole solution and that for data sharing to work properly, other things, like legislated standards for distributed sharing, are needed in the Australian system.
  • The software vendor community has had to wake up and contemplate a much less sleepy future, where their software will have to either be entirely re-architected from the ground up for distributed data sharing (read, cloud architected) or they will need to build wraparound interfaces (open API and FHIR translators) so the data in their old premise-bound systems can make its way far more easily on to the web to be shared more seamlessly in real time. You know the vendors are waking up because at yesterday’s MSIA workshop session, a panel of nine major vendors all stood up and said that they wanted a standards and policy roadmap sooner rather than later. This is an acknowledgement that they can’t hold back or ignore change any more so they may as well get on with things, but to do that they need certainty in policy, so they make the right investments. By the way, it’s not been the vendor’s fault that they find themselves in a backwater having to invest a lot to catch up to the rest of the world. The government has stood back for years and let the market essentially do what markets do … move to monopoly players and fail the system.
  • The ADHA now has a new meaningful direction so presumably we won’t be wasting about $350 million a year propping up one old idea that everyone realises now, can’t work by itself – The My Health Record. In this way the ADHA might be able to get some mojo back. It has done some good things over the years – like help get e-prescribing up and running quickly through covid – so it’s not like it couldn’t get stuff done if it was pointed in a better direction.
  • The issue of how the ADHA can run and maintain the MHR while trying to deliver new standards and interoperability (two things that fundamentally conflict) might have been sorted by unofficially appointing the CSIRO to run the middle on technology standards, and, to some extent even help facilitate industry in moving faster to the rapidly evolving concept of “sharing by default”. In one sense, the CSIRO is the new National Health eTransition Authority (NHETA) and Kate Ebril who runs the show over there, the new (and rehabilitated) Kelsey (who was smart and a leader but bet big on the MHR and opt-out and wouldn’t reconsider his bet). Ms Ebril complements Ms Cattermole, and the work the CSIRO is now doing allows the agency to get on with keeping the MHR in play in a way that suits the new plan, and doesn’t hinder it. Ms Cattermole is a master administrator with no experience or expertise in digital health, Ms Ebril is a highly experienced digital health person, who as much as anyone else understands how to shepherd standards back into the digital health ecosystem. Two is much better than one.
  • The politicians at a federal level have a plan that can eventually deliver them meaningful wins on a whole lot of things they promised going into the last election, but for obvious reasons, had no clue how they could deliver. One of those things was fixing the primary care sector. If in five years’ time, McCabe’s plan pans out, maybe, just maybe the rhetoric of turning the system to preventative care in order to manage chronic care and keep people out of hospitals will be possible. If it’s going to happen, GPs will need to be connected properly to the system, and this plan has a means of that happening one day. It might even connect hospitals to aged care and the NDIS, but let’s not get too carried away yet.

If Mr McCabe does this one thing – “21st Century Cures Act, Australian style” – he might just end up laying the foundation for actual transformation in Australia’s healthcare system.

A lot of people say nothing can change unless you change the funding paradigm that states do hospitals, feds do primary care, both by activity, and the private health insurers do whatever infill is needed.

But nothing in payments changed fundamentally in the US (you can’t take money away from the rich in the US) while the 21st Century Cures Act is revolutionising provider-to-provider data sharing and meaningful sharing of data with patients, and by doing this, bringing massive new value to the system and patients.

The magic of what Mr McCabe has done so far is that powerful forces keeping old ways intact have not really noticed most of what he has set in motion. Some of these forces are somehow now even in Mr McCabe’s camp cheering him on. They’ve been co-opted and they haven’t quite realised it yet. That’s clever (if he planned it).

Probably the most powerful and difficult nut to crack in our healthcare reform problem Mr McCabe seems to have left to last: the states’ obsession with hospitals and state political cycles and expediency.

In a very interesting session at MedInfo23, ex-Secretary of Health for NSW and now CEO of our largest digital health company Telstra Health, Elizabeth Koff, let rip with a few home truths about what goes on behind closed doors in state health planning.

The bottom line was, according to Ms Koff, that the states are all still fundamentally focused on “bricks, not clicks”.

Everyone can see this problem in the schedule of shiny new hospitals planned in some of the big states. I think Queensland has nine on the drawing boards.

And even if you think about what the states are doing about “clicks” they are all almost wholly focused on building digital health in their hospitals, not in building digital health systems for their constituents.

In a telling session where the eHealth chiefs from most of the major states and territories lined up to tell the audience about digital health progress in their states, none talked about systemic programs to connect their hospitals to primary care, aged care or the NDIS.

Yet when a GP from the audience asked the question, every chief on stage claimed that connecting to primary care was integral to policy in their states and that if you looked at some of their programs – Lumos in NSW was given as one example – you could see it was a focus for them.

But it isn’t, and it’s very obvious. Connectivity to GPs is a complete mess.

The state of connectivity between hospitals, general practice, aged care and the NDIS, is perhaps the biggest and most fundamental issue faced by both the state and federal governments moving forward if they don’t want to go broke in the not too distant future.

The states are building lots of new hospitals and then specifying and installing multi-billion-dollar global EMRs for these hospitals.

This isn’t the fault of the eHealth chiefs in each state. It’s their job to build this stuff and make our hospitals work much better.

You wonder what would happen if the federal government got bold enough to tell the states that if they didn’t address the problem of connectivity to the rest of the healthcare system in a meaningful way, they would start defunding their hospitals, or perhaps worse, not accredit them via some policy and standard of connectivity.

To do that of course the federal government would have to hand over much of the money they fund GPs with to the states, and given how badly states boondoggle everything for political advantage still, including building hospitals instead of healthcare systems, that could just blow up the system forever.

But there is some hope that Mr McCabe’s plan will force enough change in the ecosystem of data sharing to make such a seemingly fantastical idea possible one day.

Quite a few years back Kevin Rudd floated the idea of the federal government taking over all of health and predictably the political backlash from the states was swift and harsh.

But what if the federal government puts in enough policy in terms of how data is shared and then the right KPIs for states getting funding, based on shifting the system from one hugely overweighted into tertiary care, to one which is driven by value based and preventative care in the community?

That would mean giving states responsibility for all of the health system and presumably the states divvying that outwards via their pre-existing hospital network and PHN footprints, so funding was appropriately applied according to different regional needs.

This is how many highly performing health systems run in some other countries around the world. It’s not a ridiculous idea.

Mr McCabe probably isn’t thinking that big yet. But if his plan works, the things that flow from it might one day lay the groundwork for such vital and transformative healthcare reform.

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