It’s 10.14am and I’m about to be late for a catch up with Tim Kelsey, the CEO of the Australian Digital Health Agency. I can’t find the Flying Egg Cafe. If I miss him, that’ll be it for another couple of months. He’s a truly busy man.
I’ve given up and I’m standing in the middle of the courtyard where the shop should be, despondent. I feel a little like I’m the has-been rock journo in Almost Famous and I’ve just missed Russell, the lead singer of the up-and-coming band Stillwater.
I first met Kelsey within weeks of him starting at the agency. He was at once charming, erudite and full of enthusiasm. Here was a future star for sure (staying with the rock star analogy). But he wasn’t going to make it. No amount of talent in a lead singer was going to pull this band back from the abyss. Once called NEHTA, the name change hadn’t fooled anyone. The fan base had abandoned the group and was never coming back. I gave Kelsey a few months.
That was more than a year ago, and Kelsey emerges stealth-like from a side entrance, by himself, smartly attired in a blue suit, looking a little tired but with a smile. He’s lost as well. But only for that moment. He’s got 30 minutes until his next meeting and he wants to talk. Sans entourage he’s very keen to straighten a few things out. He’s not only alive and in voice, 12 months out he’s got the band back on the road and it’s rising on the charts. But there’s a long way to go.
The degree of difficulty of Kelsey’s job is somewhere above 9 out of 10. He landed in the midst of a mess, albeit there had been a lot of learning done by his predecessors and a crisis of confidence at the ADHA. He was an outsider coming into a big government agency. He had to answer to each state government and the federal department of health, and he had to please a plethora of highly political organisations such as the AMA, the RACGP and the Pharmacy Guild. And he had to manage technology execution.
He also inherited a huge roll-call of critics for the work that had been done so far or not done, more accurately, and for the My Health Record project in particular.
Many of those critics remain and some of the criticisms, given how this agency has evolved, are probably still valid. Some of the major ones include:
- That the technical solution being pursued – which relies on a lot of PDF documentation being aggregated – will significantly retard future flexibility and functionality of the data being sought
- That the standard being used as the basis for the information architecture of the MyHR – CDA – is not fit for purpose and should have been moved on to something more agile like the rapidly developing and more widely accepted FIHR
- That “opt out” – which was recently approved by the Government – is a “cop out” in that it’s forcing the public to have a health record when they clearly have no idea yet of what that means for them
- That privacy (yes, that old chestnut) is being ridden over roughshod in how the MyHR is being delivered. Echoes, even, of the Australia Card have emerged from the more harsh critics
- That in terms of security we are creating one giant “honeypot” for cyber criminals and no matter how secure it will forever be a target of attack
- That nothing actually is getting done, even if you overcome all of the above.
That’s a pretty big list of concerns. And as a result, there’s quite a few lobby groups and semi-terrorist social media collectives that rail against the ADHA with frequency and vigour.
What does Kelsey make of it all just over one year into the job and still singing high and loud?
He’s pragmatic and determined. And he appears to be genuinely optimistic for the ADHA, the MyHR and digital in Australian health in general.
He reminds me that while there are, of course, issues still, it’s just not an option for Australia to miss the digital health revolution by not putting in place a reasonable platform upon which future digital health can operate.
“The MyHR isn’t trying to be the be-all and end-all of digital health. It’s not trying to compete with fast-moving digital innovators. It is very simply trying to bring together the six to eight sources of key health data for each individual and make that available in a reasonably standardised form for their benefit and for the benefit of the health system in general moving forward. It’s there to facilitate the future,” he says.
“If we can do that, we will have arrived at the beginning of digital health, and all the opportunities for our future that it promises,” he tells The Medical Republic.
One aspect of the MyHR is that virtually none of the critics argue with the goals of the project, which is what Kelsey is describing here. Essentially, we need to put down a very basic standard for Australian patient data that is secure and appropriately accessible by the right individuals. If we can do that, the promise of digital transformation in health will be huge.
Most of the criticism is around how that is being done. Whether what the ADHA is doing will actually achieve its goals.
Kelsey rejects my suggestion that there is not much that’s collaborative about Australian healthcare, from state governments choosing vastly different hospital IT vendors, through to pathology providers retarding open access to data to hold in place reselling channels through doctors, to the normal infighting you get between federal and state governments and the bodies they fund, and the politics of the various medical and pharmacy colleges.
One thing Kelsey could not be criticised for is travelling to the outer edges of the healthcare system and listening to people who are delivering at the coalface. He has spent much of his first 12 months travelling and listening. And processing as he goes. That processing has ended up in a national digital health strategy. Which has been criticised as one might expect.
But, as Kelsey points out: “We have a roadmap and framework from which we can all work now”.
Kelsey says that compared with the UK, where he has done a lot of similar work in delivering systems to prepare the UK for digital transformation based on patient data, the people he is meeting are very collaborative and on page. From state governments to commercial software vendors to the medical colleges, he is sensing very strongly that “collaboration” is in air, whether it was there in the past or not.
When asked why he thinks everyone is suddenly being more collaborative, he says if that hasn’t been the case in the past then perhaps the promise of digital health is driving a “greater community good” type agenda among all the stakeholders. Maybe the prize here is just too important for infighting to continue.
“Nearly all the people I’m talking to see that if we don’t do this, we will miss a big opportunity for Australia,” he says.
Kelsey has an urgency about him. Some people tell me that he’s just a good salesman. He is. But why go to all this trouble selling. It’s a lot of hard work and he’s not getting a lot of thanks — not yet anyway.
Kelsey says if we get a reasonable digital data platform in place for Australia then we will be in a position to exploit technologies, synergies and innovations that will take an already well-placed health care system to heights no one could have imagined.
But, he warns, none of that will come easy. The ethical, safety and regulatory issues that digital health will bring with all of these advances too are going to be huge.
“We won’t be able to deal properly with them without proper data and without a reasonable digital baseline for data in the system,” he says.
As an example, Kelsey points to the march of artificial intelligence in medicine, and its current lack of evidence base and regulation.
“AI, in both diagnosis and therapy, is shaping up to be game-changing, but we must be able to have data to prove that it is working and that it is safe. Without a decent digital data platform in the country that is going to be very hard."
Kelsey also sees a similar pro-and-con dilemma emerging for the potential of genomics and data.
We’ve met at this coffee shop because it’s next to his next appointment — one of Australia’s major commercial healthcare providers. He’s up and away to do his thing. Selling. Ideas and the future.
Jeremy Knibbs is Publisher of The Medical Republic.