10 December 2018

Can we avert the MHR train wreck?

MyHealthRecord Technology TheHill

The plotline of Hollywood’s most recent runaway train epic, Unstoppable, and the My Health Record (MHR) are delightfully aligned in lot of ways.

Giant freight train leaves station with lots of good intention to deliver the goods. Somehow the driver doesn’t quite make it on board. Things roll on based on the train’s original timetable and plans. A few individuals see the problem and alert the relevant authorities in time to slow the train down, or even stop it. Individuals are ignored by a system which is political and complex. Train subsequently picks up so much speed and momentum it becomes pretty much unstoppable. 

The train is heading for an un-makeable bend in a major city, where it will surely derail, and plough into a chemical plant killing thousands.

But … there exist a few brave souls  – some of whom the authorities don’t like or trust for their outspoken ways – who are going to try  to jump aboard, make their way to the lead engine and avert mass disaster. 

As they do this, some of train staff, who are now reduced to non-paying passengers trapped on a death ride, take the chance to jump off and save their own lives.  If only Denzel Washington was into digital health. 

Last month, in the new and brightly furnished offices of the Australian Digital Health Agency (ADHA), in Darlinghurst, Sydney, some very senior leaders of the MHR had taken some time out of their busy schedules to meet with a visiting overseas digital health dignitary. 

Professor John Halamka, of Beth Deacons Israel Hospital in Boston in the US, and of Harvard Medical School, was on a whistle-stop tour of Australia, and someone had arranged to hook Professor Halamka up with the powers that be in the ADHA. It was on all the quiet and not organised by the ADHA itself.

The purpose of the meeting was for the ADHA to get direct input from someone who has experience of digital health rollouts all around the world.  Professor Halamka worked closely with the Bush and Obama administrations in digital health strategy and implementation. He  is one of the most accomplished, well travelled, and experienced digital health strategy experts there is. And he’s dealt with the odd digital health runaway train himself.

To the ADHA’s credit, the agency had indicated from the outset it didn’t want Professor Halamka to sugar-coat any of his thinking.

Which was just as well, because Professor Halamka isn’t the sugar-coating type. 

He doesn’t need to be. 

In the days leading up to his 48 hour Australian trip he had been:

• With Bill Gates to outline ways to make about a billion dollars in Gates foundation money have rapid and meaningful impact on HIV rates in Africa via digital health connectivity, and simple technology implementation.

• In China to meet the senior leadership of the Chinese government, including a quick catch up with one Xi Jinping, to help that country formulate a radical and high impact plan to kick start the biggest digital health connectivity project in the world. The plan is to see China go from near last in digital health innovation and connectivity to a global innovation leader within a few years. The plan includes the aspiration to connect the entire Chinese population and create the biggest AI medical database in the world. If they succeed in the latter, China will likely be the innovation hub for digital healthcare globally. The Chinese don’t do things by halves.

• To Norway to advise the government on how to roll out its plan to reframe the national wealth from North Sea oil, which will run out in 20 years, to green technology and health innovation.

• Doing his day job, as an ER physician and CIO for the New England district of the US, overseeing about $US6 billion in digital expenditure and taking the odd telehealth call from a remote US community where someone was poisoned by a rare fungus. (He is the US expert on the topic and makes  himself available for emergencies.)

Professor Halamka, who is charming, polite and considered, doesn’t have to time to mince his words.

Despite the brevity of his visit to Australia, he seems to understand the basics of our health system. However, he acknowledges that comparing countries on digital health progress is near impossible.

This is a summary of what he is reported to have told the ADHA:

• Government shouldn’t do infrastructure projects like the MHR in the manner it is attempting. There is no example of it ever working. Governments aren’t geared up to build and run stuff, especially giant stuff such as the MHR.

• The MHR, though a noble idea, isn’t an infrastructure project that anyone in their right mind would do now given how rapidly data-sharing technology is evolving. It’s way too centralised. Its very premise is already seriously out of date.

• The ADHA should stop immediately, look at all the good stuff it has done and is still doing, and refocus its money and effort where it can have meaningful and near-term impact for Australians and the healthcare system. 

Professor John Halamka, above, says governments are simply not geared up to build and run giant projects such as the MHR

Specifically the ADHA should:

• Get into the game of helping convene the major able parties, and help establish standards and policy frameworks for how innovators and industry can operate so they have certainty about what they are investing in and align with government on goals.

• Actually embrace the FHIR (Fast Healthcare Interoperability Resources) information sharing standard technology,  and stop just talking about it being a good idea. He pointed to the fact that Google, Apple, the US, UK and several European  governments are not likely to be wrong, and even if they are, Australia would at least be in good company.

• Recognise that projects like the MHR can suck the oxygen out of the ability of countries to transform healthcare systems because they become some default for health strategy, when in fact, they aren’t strategy, they are just projects.

• The ADHA should look at its current strategy and get agile.

Specifically it should:

– Break the big issues into some small, but important and achievable, projects.

– Create an enabling policy environment and make sure it’s well supported so it can assist and protect innovators and risk takers.

– Accept that there is no such thing as “zero risk”, so stop trying to manage it

– Help the best talent experiment boldly and fail fast and don’t punish that failure, particularly if it is recognised early.

AUDIENCE RESPONSE

Apparently, and perhaps surprisingly to some, no one from the ADHA listening to Professor Halamka giving his somewhat raw assessment was in disagreement. Apparently the body language was: ”Yep, we get all that”. 

The senior leadership of the ADHA are anything but stupid, and they are committed to improving the lot of the healthcare system.

Tim Kelsey, the CEO of the AHDA wasn’t at that meeting. And he’s since said that from what he has read about Professor Halamka’s comments, the professor doesn’t understand what is really going on in Australia.

Which is strange, because Mr Kesley speaks very enthusiastically about doing nearly everything Professor Halamka was suggesting.

Last week, he emphasised to a meeting of the Medical Software Industry of Australia (MSIA), that government’s most urgent future task was to co-ordinate the development of common standards and policy for industry, and determine how to replatform the MHR on more appropriate technology.

That’s potentially the good news. Our local digital health leaders appear to get it. The MHR in its current iteration is woefully outdated and needs to be replatformed.

 The ADHA should put a lot more effort into enabling doers by getting the nation’s act together on interoperability policy and standards. Why, then, if the senior leadership of the ADHA gets it, does it let the MHR train keep collecting speed, heading towards that unmakeable bend?

WHY THE TRAIN WRECK? 

Here is a possible explanation:

• The MHR is a poster child government project. Sure it’s had its issues with cost and failure but it’s bold, and it’s perceived to be getting things done. Forcing opt out, which probably wasn’t a bad idea in practical terms, is a demonstration of just how government can actually make the hard decisions and get things done.

• Healthcare in Australia is, in relative terms to the rest of the world, in good shape. If  health spending is only at about 10% of GDP and the US is at 18%, and we’re getting on with things like digital transformation, who is going to upset that story? If it’s not broke, don’t fix it. Politically, the MHR is under control, even if, in reality, it is quite a mess.

• We’ve spent $2 billion so far. We can’t have gotten that wrong. Butif it is wrong, just fix it please. It’s now too big to fail. Hence the runaway freight train analogy. How does it, on its possible current trajectory, really stop? How do we get on with the stuff that the leadership of the ADHA says is important, but isn’t actually doing yet?

• The ADHA and the MHR effectively report to the secretary of the department of health, who effectively reports to the health minister. Even if Greg Hunt himself was in the meeting with Professor Halamka and got the logic, who in their right mind would be admitting that the MHR is going the wrong way with about six months to go until our next election? Health issues almost lost the last election. A big admission like “the MHR is wrong and we need to reset” is not politically palatable at this time. 

• The secretary for the department of health, Glenys Beauchamp, unsurprisingly, probably gets all this. The train is going to go off the rails in some way now. They all realise this. But practically, at least for now, there is nothing at all they can do about it, without risking more damage to their reputations and careers. Better to let the whole thing drift along to what seems inevitable, a change of government. Everyone can wait a little longer.

• A change of government is the most likely and reasonable release valve. At that point everyone who comes in new can blame everyone who is going out. Glenys Beauchamp can potentially get away with: “I told them to stop but they wouldn’t.” Careers are rescuable. Even some of the senior leaders of the ADHA are likely to keep their jobs. It’s about timing and perception.

END RESULT

If this all seems a bit depressing, it actually isn’t at all. We do not have long to wait. And if Professor Halamka is right, and the ADHA do get it, it will be making some plans behind the scenes to change things when it can.

Why else should be we be feeling OK about this bizarre situation?

Well, the technology is moving to enable the patients, with or without the assistance of government. Google, and most particularly Apple have committed to FHIR, and to health. And why wouldn’t they? Health is the biggest single cost item of any government. And it’s a big human issue. Both global platforms can do good with their technology and make plenty of money.

Grahame Grieve, the creator of the FHIR standard and a technical consultant to MHR, has a very basic piece of commonsense advice about the MHR and where we are at. 

Mr Grieve says:

• There are no complex IT projects that ever work first time because you simply don’t know what you don’t know. That was NEHTA and the PCEHR (the old name for the MHR).

• Second time round you’re learning. But really, you only then start to get a good sense of what your real problems are and how to tackle them. That might explain the increased commitment to the MHR by the government two years ago. We are doing OK. The principles are good. We just need more fire power.

• Third time round is when you most often actually start to apply your learnings and get traction. 

If you think about Mr Grieve’s logic, we aren’t quite at third time around yet. We are coming up to it most likely when the government changes and it becomes acceptable to assign blame, fire a few people, stop things that everyone knows are now ridiculous, and go again.

Mr Grieve has been very brave in his time. And though he is a tough character he is vulnerable like all of us. He get’s very affected by the harsh criticism that has been levelled at him over the years. 

Professor Halamka points out to me that Australia has a lot going for it. “Mostly you see governments shooting the messenger in these circumstances, and I’ve been pleasantly surprised that the ADHA and others haven’t shot Grahame, who has so much to offer,” he says.

 I pointed out that Mr Grieve was shot by previous digital health apparatchiks in a pretty brutal manner a few years back. But he just got up, wiped away the blood, and kept going, in the US though mostly.  

Today, he is lauded globally for his work on FHIR, and in much bigger and more sophisticated digital health markets than Australia, and by major global health vendors.  

It would be pretty embarrassing for Australia to shoot him again when he’s leading the world in solving digital health issues.

Professor Halamka, ever positive, laughed. “Oh, Grahame never pointed that out.”

Over the years Mr Grieve’s learnt a lot of political smarts. He knows that, in the end, government and the ADHA, will form a critical part of changing our digital health ecosystem for the better. He sees both the good and the bad in the ADHA and the MHR, because there is both good and bad there.

And he’s determined to make it mostly good.

Something to say?

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6 Comments on "Can we avert the MHR train wreck?"

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Jane
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Jane
8 months 8 days ago

Electronic health records have a minuscule 0.2% benefit on mortality rates. The Ministers catch cry of “it will save lives” does not ‘sing true’. (A surgeon’s very real concerns about My health Record” https://womensagenda.com.au/uncategorised/a-surgeons-very-real-concerns-about-my-health-record/)

Lou Lewis
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Lou Lewis
8 months 9 days ago
When I went to my first MHR meeting ( called a PCEHR at the time) , after hearing all the spruiking by speakers who were former presidents and vice presidents of the AMA, I voiced my concern that this record was going to be a tracking system of patients of their medical as well as their social situations. Of course the proponents ridiculed my opinion but unfortunately for them not many of the doctors present had an opposing view to mine, it’s just that they didn’t publicly voice it. So for a few years it was an opt-in system and… Read more »
Dr John Barr
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Dr John Barr
8 months 9 days ago
What’s the point of having a record which only contains what the patient wants and where the patient can access and delete anything they want? If information is uploaded, it is done by the GP. Who is going to pay me for the time it takes me to organise that, or is it just going to be added to the estimated 10-15 thousand dollars of unpaid work I already do and that Medicare won’t allow me to charge for? To be meaningful, the software need to be set up so that as soon as I log out at the end… Read more »
S Silverstein
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8 months 10 days ago

“Professor Halamka worked closely with the Bush and Obama administrations in digital health strategy and implementation”

And it has gone so swimmingly well, the majority of physicians and nurses in the US despise EHRs, they distract from patient care, and the American Medical Association leadership has called them “the digital snake oil of the 21st century.”

As per my presentation at HIC 2012, good luck Australia, you’ll need it – to save you from the hyper-enthusiasts

Dr Bernard Robertson-Dunn
Guest
8 months 11 days ago
There are two major problems with My Heath Record that are insurmountable. 1. It means giving (or your doctor selling) your health data to the Commonwealth Government for no clinical benefit – the government makes it clear it is not a clinical system and should not be relied upon to be so. We have no idea what they might use that data for and no amount of legislation can guarantee future governments won’t change the law. 2. It is an additional administrative overhead on top of the doctor’s own system. Health Records are already being blamed for GP burn-out. Adding… Read more »
Anon
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Anon
8 months 10 days ago

It sounds very familiar: the conduct of AHPRA – fake it till you make it. They are still desperately trying to ‘protect the public’ for which not a shred of high quality evidence exists. But…the abuse and errors by these retired policemen. What can we say without a revolution French stye? Some heads need to roll.

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