19 July 2018

Top 10 most awkward questions about the MHR

Government MyHealthRecord Technology

The MHR opt out launched on Monday to a raft of consumer media interviews which reveal a disturbing lack of understanding of some key issues underlying the project.

They are on a 24-hour news cycle and their major source of information is the government itself. So we’ve put together our top 10 most awkward questions about the project.

We’d love to hear the government’s take on them.

  1. What is the MHR for?

It’s surely a sign of a project that has lost its way just little when you can’t easily get to a short and precise description of what the project is meant to achieve. But try to find anywhere on the ADHA website what the precise and meaningful objectives of the project are.

There’s of course a lot of ideas and words, there is ton of one off examples of people being better off, and there is an abundance of high level stuff about better connected healthcare in the future and consumer control. But given the bill for this thing is over $2 billion already, what do we have to show for it, and what do we want say to our kids we spent our money on? What are just four key things we want to achieve by spending all this money and confusing so many people?

If you listen to the media interviews this week about the MHR  and why it is important you will get a lot of talk about patient safety, security, system efficiency, and consumer empowerment. But to what end? You won’t  get hard core evidence-based goals for the project. And you will not actually get a hard commitment to specific key performance indicators nor any meaningful analysis on project ROI.

The closest TMR ever got to understanding what the MHR was for was in an interview with the senior management of the project about six months ago. Not being able to find anything really clear we intuited some hard core goals for the project and asked what the AHDA thought about those goals.  The major answer we got was: “We do not set the goals, the Department of Health does, we just implement the MHR…”

Not to be dissuaded here are our four suggestions  for hard goals that we think relate directly to the project. We think that if you spent long enough water torturing the top brass you’d probably get something similar.

  • Halve the rate of death or serious misadventure, including hospital admissions, through medication error across the country – this figure is notoriously hard to nail down with any degree of accuracy, but it is significant we know.
  • Make our pathology ordering 25% more efficient through better data visibility across the system on ordering and results.
  • Return a big chunk of time to doctors via system efficiency. Again, we didn’t get a number. But there are estimates out there that suggest a saving of up to 20% of a doctor’s working day.
  • No fax machines in the healthcare system (this might seem strange to the un initiated, but most healthcare professionals in the know will understand this is a proxy for vastly increased interoperability efficiency and security in our system.

The problem of course, even if the project had well defined goals and KPI’s like this, is measurement. No one is measuring any of this in relation to this project . This is partly because these things are so complex to report and measure  anyway. The point is we haven’t set proper targets and so we aren’t measuring progress or success.

2. Is this whole project based on technology and ideas that have already passed us by?

Are  there better ways to achieve the goals of the MHR? It’s looking awfully like there might be. Within a decade most doctors will run highly connected (largely cloud based) patient management systems that will talk to everyone and everything via sophisticated distributed and highly secure mobile networks. The long and the short of this is that most patients will have their most important medical information on their mobile phones live updated to their local GP PMS, or whatever doctor is a proxy for their GP and their PMS.

Forcing GPs to enter all this information to a centralised database, which can’t keep up, and then spending a fortune having this database talk to pathology, imaging, pharmacy, the PBS, and so on, and  then trying to sort out all that bureaucratically held data in one central record?

It just doesn’t seem like it will compete with a mobile phone that interacts with a patient everyday in a meaningful  and distributed way and involves only the medical professionals and services that these patients really need. Not withstanding, such technology has the one of the same pitfalls of the MHR. It is mobile and digital and the key demographic where the MHR can have impact aren’t digitally literate.

  1. Is the project design a sledgehammer to miniature walnut?

If you do the maths on who really does need a centralised medical record, and where the goals described in point 1 are most important, you very quickly reduce yourself down from a population of nearly 25 million potential patients, to a very elite group of patients who fit a very specific profile.

The biggest part of that profile is that they’re getting old and dotty and definitely need a little centralised help. But at the very pointy end of this group we might not even be talking 100,000 patients. So why are we doing everyone in one go? Is that a long tail of bad ROI that we could leave alone for a bit longer? Why aren’t we concentrating on this highly needy population using digital  and data targeting smarts instead?

In some parts of the health system we are. Take an app called Medi-Tracker and its connectivity to nearly all the patient desktops of our GPs, to many of our allied health professionals and chronic care services. How much does the MHR figure in this project? It’s a nice to have at best at this stage. The really important data is being exchanged in real time on the Medi-Tracker digital network via a tightly bound community of patients and healthcare professionals.

  1. Is the MHR secure?

Don’t worry folks. The government has spent an absolute bomb on making this system secure. They are rightly worried, and they have gone to town as this is a big juicy centralised pot of much sought after data. So, it’s got the latest in security design technology applied to it. Too much some might even argue. As doing this makes the whole thing a little clunky to use and complex for older non technology using patients.

Unfortunately, it’s a massively complex system – it has to be – with perhaps more points of access (read, starting point for hackers) than any other government held database in our history. For starters, it has to be accessible to lots of doctors and health professionals – especially when a MHR is birthed.

Then the patient can get it and start messing around with those settings – I want this doctor and not that one. I don’t want this record visible and I do want that one visible. And even after all this, sensibly, there are government overrides to the whole system – like when you present to emergency in a hospital. All of this of course leads to our next awkward question – about the complexity of being able to maintain your record versus the demographic of those who most need a system like this – ageing dotty non technological inclined senior citizens.

But let’s wait for that one. Let’s accept that the MHR platform  is the very latest in security as we are told by the ADHA. Then let’s also accept what in the IT world is a baseline when you are building centralised repositories of sensitive data these days. There are only two types of secure databases in this world: those that have been hacked and those that will be. This idiom was first made famous by former FBI director Robert Mueller.

So the MHR will be hacked one day. It’s a honeypot of data. Move on. We just make sure we know what to do when it is hacked I guess. Or do we just not have a giant honeypot in the first place?

  1. Can the major target patient demographic even use the MHR?

Short answer is no. Ask your grandad to try to use it. To be fair this isn’t just an ADHA issue. When it comes to using new digital technology such as apps and mobile phones Australia is massively ageist in presuming older people can work all this stuff. Just ask the banks how many people over 75 use their mobile apps versus those under 50. Anything digital was always going to be a problem for the ADHAs key demographic. They aren’t that digitally  literate. The MHR will still be useful for doctors of course, but at what cost, and why are we out in public saying it is going to empower patients? It would empower a young healthy Guardian reading hipster almost certainly. But that’s not where our key demographic for ROI in the health system is.

  1. Will the design of the MHR facilitate or debilitate health innovation in Australia?

The CEO of the Australian Digital Health Agency, Tim Kelsey, has stated a few times that the ADHA should be there to facilitate digital innovation in our healthcare system. He says that the MHR does this because it is the only single source of truth around well delineated sets of patient information, and that the ADHA is doing all it can within the limits of its vital role in data security to make access to the system open.

That sounds pretty good. But there is a big problem: it is a “centralised single source of truth” and in order to be that everyone who is hoping to innovate and use this source are in essence dictated in how they evolve by the rules around access to this information and the rules around its use. In essence, if you have to rely on the MHR you are going to be tied to how slow they are and what restrictions they put on its use.

Most modern day digital entrepreneurs are going to say to you that you can’t centralise and lock up data in the manner that the MHR is doing and hope to facilitate more innovation. The new digital world is mostly open platform. The MHR is not open platform.

Most of the MHR data is not atomised, it is buried within documents, many of which are PDFs, so you can’t easily get to a lot of the data. But the key issue is that whatever protocols the ADHA sets for accessing the data now and moving forward, these will dictate to the whole healthcare innovation community how they architect their products in some way if the MHR is going to be so important to everything and everyone as the ADHA would like. This drags everyone down to the level of the MHR. It locks developers of new products in a gilded cage. A cage which is ultimately controlled centrally by the government.

If the ADHA restricted itself to overseeing the development, moderation and introduction of standards for communication, security and interoperability, that would be very helpful to the health innovators. They’d have a framework not a locked box with a complex set of rules to more easily work with each other and synchronise innovation protocols across the country. Placing all the good data in one place where there are very strict rules for access and interpretation ,and then forcing lots of organisations to talk to this centralised system is highly disabling of the innovation process.

Another issue is that the platform on which the MHR is built is old, and does not support reasonable access, security and distribution of atomised data, which innovators need. Don’t worry about that, says the ADHA, we are going to re-platform as we recognise that problem. That’s encouraging.

What isn’t encouraging is that the AHDA said they would be consulting most of this year on that subject with the public, software vendors and the like in order to be ready to put the re-platforming out to tender in time for a start on a new contract for service delivery in 2019. And so far they’ve done none of that. They’ve been too busy with the opt out process itself.

The existing contractor, Accenture, apparently doesn’t even think it will have time to do this process now. It thinks  it is likely going to get the renewal contract and that contract won’t include a significant re-platforming of the system.

  1. Do doctors support the MHR?

A somewhat ugly truth for the government is that the vast majority of doctors in the country are either on the fence or do not support the MHR rollout in its current state. Most support the concepts. But who wouldn’t? They are smart and visionary ideas. But smart and visionary concepts don’t necessarily translate to reality.

If you did  a count of the non-fence sitting doctor opponents you’d  be well in the red on supporters.

The ADHA will tell everyone that this assessment is simply wrong. That they have the support and backing of the major doctor organisations for the idea of the MHR. And they do. But that isn’t the support of doctors themselves. The RACGP  and the AMA coming out and saying that they endorse the concepts behind the MHR is not your every day GP agreeing with how the MHR is going to interact with them on a day to day basis.

How would I know the majority of doctors don’t support the MHR at this point of time? You get an inkling from a recent TMR survey of GPs which asked if they had signed up for their own MHR yet, and if not, were they going to stay opted in for it now that opt out was here, or opt out?

Of nearly 200 responses, 18% said they had signed up already, and 82% said they intended to opt out of the MHR. Although this is a low sample number, the response is so stunning we do not even believe it. But we do think something is wrong in how the ADHA is communicating the utility of the MHR versus the other issues that GPs face day to day. In your most optimistic interpretation of this result you’d have to say GPs are not bought in and have other issues on their mind.

Another sign that GPs  just aren’t on board is that although just over 30% are uploading case summaries (they get paid to do it) , only 6% or thereabouts are actively using the system in any one month. The ADHA might maintain that this will all change when so many people are now opted in. The patients will drive more interest in other words. But remember, until Monday patients didn’t really know about it. And as they come to know about it, it doesn’t feel likely that they are going to drive doctors into the system if a lot of doctors are actually opting out.

What will a GP say to his or her patient if they ask for their view on the MHR and that doctor has opted out? Some other clues come from a ring around of the major patient management system (PMS) vendors. Most report a significant lack of interest from the doctors part on MHR functionality. Any PMS that has MHR functionality was paid to put it there by the government. It was neither a doctor nor a patient driven addition. Doesn’t that tell us something?

Finally, even if the majority of GPs somehow managed to be supporting the MHR, not many specialists do. According to the Australian Institute of Health and Welfare (AIHW) in 2015 we had about 88,000 medical practitioners actually employed in medicine, which includes at least 34,000 GPs and 49,000 specialists. Let’s say GPs are 50/50 on the MHR to be conservative. We estimate that based on that still, well over 65% of doctors do not really support the MHR rollout.

  1. If doctors don’t support the current MHR rollout, how do we expect patients to support it over time?

Good question. We don’t know. It sounds like it will be awfully hard though doesn’t it?

  1. Is there a detailed ROI analysis of the MHR for the Australian health system?

Another way to frame this question might be “If you dropped the MHR project tomorrow how hard would it be to achieve the stated goals of the project and would you save a lot of money?”

There is no thorough analysis on what return on investment the MHR will provide the Australian tax payer. There are estimates of savings on things like reduced pathology reporting and reduced hospital admissions from medication errors. You can see these if you dig into the budgets and reports on the ADHA and Department of Health websites.

The number for savings provided in government estimates is $123 million a year by 2020-21. Why isn’t there some detailed document with some very specific analysis on where that return is coming from, how, and year to year targets by which the ADHA is measured?

If you are going to potentially ruin a pristine piece of land with a new mine, a highly detailed environmental impact statement which covers all bases is the first mandatory requirement for the miner. In the case of the MHR, we are largely still guessing what might happen based on some reasonably fluffy estimates and research into things like medication errors.

If you don’t think these estimates are fluffy then try to find the detailed modelling that the ADHA has done to get to their figures.

We guess the ADHA is confident in their $123 million number because some of the other numbers they spruik for potential savings are astronomical. For example, they estimate that you might save up to $7515 per patient per year, if you get the MHR right and avoid doctors having to look for a lot of currently hard to access information. I can’t even calculate that saving per annum. But it’s a long way into the billions I’m sure.

Which is a long way from $123 million. Why such a big variation? The ADHA also say that 6.5% of pathology tests and 4.4% of imaging tests are avoidable and the MHR will go a long way to avoiding these costs. That’s also well into the billions.

You can see why people want to have a working MHR. It’s not like there aren’t good reasons. But there still aren’t any good figures at this point we can rely on, or a means of measuring progress easily and success. Given these potential numbers you have to wonder why.

  1. Could you stop the MHR train now if you wanted to?

The simple  answer is no, you could not. The MHR is a giant and slow moving freight train, the line in view ahead is in reasonable condition so there are no impending derailment chances, and every carriage in a cascade of politicians, industry bodies (including the AMA and the RACGP) are all in line, all the way up to our Health Minister Greg Hunt, and as of this weeks media splurge, even the Prime Minister. No-one is stopping this thing. At least not today.

The MHR was a double down bet on what many saw as a huge failure in the PECHR (its predecessor). The way these things work is they take a long time for failure to be recognised. It was recognised in the NEHTA and the PECHR so, like the US in Iraq, it was decided that what was needed was more of the same firepower. There was no real assessment of the things that were going wrong. We didn’t change our strategy to adapt for the failures made in the first surge.

The MHR failure when it comes, will be OK to recognise it in a few years, when the key personalities and players have moved on and can’t have their careers ruined in any way. But should we really wait that long to be looking properly at the questions being asked here?

Ultimately, the bridge is out on the current MHR project. I think even the top brass behind closed doors might acknowledge that. But I’d say they’d be saying to themselves that there’s time to fix the bridge and they’d be patting themselves on the back to actually have the whole train moving so well.

It has been quite a logistical effort. You could cite the constant reassurance that the MHR is going to be replatformed as evidence of such potential goings on behind the scenes.

But let’s consider just how deep the ravine is if we don’t get that bridge repaired on time . So far we’ve spent about $2billion, and by the time the bridge over the ravine comes into sight I’m guessing we might be nearing $3 billion and we will have a platform and service which are not much use to the system.

Are we taking too much of a risk here by blindly letting all these issues ride?

Closing remarks

I have spent a reasonable amount of time talking to a lot of people in the ADHA at all levels, and my view is that they are nearly all highly committed, passionate and honest in their commitment to the project. I do wonder, however, if they might not have sealed themselves in something of a giant echo chamber, and locked themselves in there with the likes of the AMA, the RACGP and a couple of other highfalutin’ organisations, political leaders and government departments, all with the same idea to now bust their way through to success regardless of the obvious issues.

One thing about the MHR now is certainly an air of bust or glory. We doubt it will be either. The project and its overriding concepts are very important to the country.

Next week, I’m going to have a good go at the Top 10 reasons why the MHR is a great idea and could still succeed. That’s going to be hard. But there is hope.

I’ve sent this list of questions to the senior brass at the ADHA. Hopefully we can also report their answers in a few weeks.

Something to say?

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26 Comments on "Top 10 most awkward questions about the MHR"

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bunnitos
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3 months 14 days ago

So did you get any answers?

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[…] not. In a piece titled Top 10 most awkward questions about the MHR, The Medical Republic reported that “you can’t easily get to a short and precise […]

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Stephan Hellmuth
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Stephan Hellmuth
3 months 27 days ago

When did the whole process of MHR start (it seem almost 10 years ago)? Why did the medical expert panel resign years ago?
Apart form the patient,treating doctors in public hospitals and the patient’s own GP who is authorized to access MHR?
I support the MHR if the data is restricted to only the above group.
Patient’s already have a digital footprint in government records(CentreLink,My Gov Portal,Medicare prescription and claim data with itemized records,Police records,Electoral rolls etc).
Insurance claims will be always be checked against fully disclosed medical records and claims be denied if risk is not fully disclosed when applying for any insurance.

Paul Neeskens
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3 months 27 days ago
Several comments 1. Its not the coal face clinicians wanting the MHR. Its others with interest and aspirations. Like the crowd giving advice to footballers. 2. Data is only useful when it is used. The mountain of data spaghetti being created will lead to avoidance, not use. 3. Digitals generally do not like uncertainty. Medical diagnoses and treatments are all embedded with uncertainly. That is why a Doctor studies for 10 years. “Non cardiac chest pain” is a very good clinical diagnosis, but terrible for the Digitals. 4.the MHR is classic Precious Cat Syndrome.(PCS). I spent $2k on the bowel… Read more »
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