13 November 2020
The ADHA needs a new camel
The last straw for the My Health Record (MHR) surely arrived this week with an FOI revelation that all the research the ADHA has done to prove to us the worth of this $2 billion project is meaningless fluff (we suspected that might be the case).
If the agency is going to survive in any meaningful form it’s going to need a new camel, and fast.
This week, an enterprising journalist working for our medical newspaper cousin, Australian Doctor, revealed he had followed up claims by the Office of National Audit (ONA) that the My Health Record was delivering on hard benchmarks of progress it had it set itself, by putting in a Freedom of Information request to gain access to the research the ONA was using to justify its claim. That full story is HERE. It’s a really good piece of journalism, although it’s unlikely to get the credit it deserves because there is so much happening around COVID, the ADHA has almost entirely turned over all its leadership, and most people are suffering MHR fatigue.
The premise of the piece is very simple and one we at The Medical Republic and Wild Health often push. The MHR is a project that is now in its 10th year if you trace it to its illogical birth as a thought bubble of a largely incompetent Labor health minister in about 2010. In that time it has:
• Cost the commonwealth the better part of $2 billion
• Traversed three different government agency structures and been rebirthed twice
• Most recently been championed by the ADHA and a charismatic UK based CEO who decided the only way to push it through was make it opt-out
• Never been set meaningful benchmarks for measurement of project success and therefore proceeded on what is really still “a gut feeling” that it’s a good idea.
The journalist suspected something might be up when he initially tried to access the results of the five cited pieces of research from the ADHA itself and the ADHA told him that as much as they would love to do that, the results were part owned by the organisations that did the research and it didn’t have the full rights to publish. We contacted one of the organisations that did the research and of course they said they couldn’t release the results without the authority of the ADHA. A neat little merry-go-round.
So the journalist put in his FOI and patiently waited for the results. These were published this week and – surprise, surprise – there are no results to speak of. Each piece of research is niche and too small to tell us anything at all meaningful about whether the MHR is doing what its builders have promised us for 10 years:
• drastic increases to the efficiency and safety of the system, including, but not limited to:
• a reduction in prescription misadventure (we are oft quoted that 200,000 die per year from this and MHR will sort it out), and
• significant reduction in pathology test and imaging duplication in the system
• and creating a platform for vastly improved interoperability between tertiary, primary and allied providers.
Critics have long argued that if the ADHA truly really felt comfortable about achieving all of the above it would formulate meaningful ways to measure each criterion.
But it never has. It just puts out reports with giant numbers on them and doesn’t reference the numbers to past or the future, so there is no way of telling what is actually going on. Here is an example of one HERE
Read this one and see if you can gauge whether prescription misadventure or pathology testing duplication is dropping meaningfully and returning value to the system. It’s just lots of big numbers. And unfortunately that is probably pointing to a lot of wasted time on the part of health care professionals, many of whom are forced to load information into the system in order to get more pay. Other information is automatically downloaded from various spots in the system such as pharmacy systems, which aren’t always accurate, and can create more confusion for people using it than clarity.
Most people in the know now are pretty sure there is nothing much going on which relates to progress on the major objectives of the project. If there was, you could work it out and report it by now.
The journalist from Australian Doctor illustrated this point with a very simple piece of analysis taken from the stats in one of these recent reports. He noted that while 3 million documents had supposedly been uploaded into the system in one month recently, only 20,000 had actually been accessed and read by other health practitioners. And when we are told they are accessed and read, we don’t know that really, and we certainly don’t know if they were accessed, read, and provided value to those practitioners. No one is doing that sort of research or measurement. At least none that they are reporting to us.
That the journalist could do this one quick calculation, and the ADHA never does it in its reports, is telling.
In what I thought would be my last rant about the MHR a couple of months back I pointed out that there was new management at the ADHA now and that surely they were going to let the MHR drift into obscurity. It would of course be far too politically difficult to ever admit that you were going to bench the “big fella”, and strip it down for parts over time to use in a much more sensible infrastructure and vision once you had a new one.
In this respect, this FOI revelation surely is the last straw for the ADHA, and the morose camel that is the MHR. Time to put it out of its misery.
If you’re an avid ADHA watcher and you are wondering if the new management might surreptitiously try to switch camels, the clue will likely be in what they end up doing with the tender it has out to replatform the MHR. Look for that replatforming to actually move largely away from the core MHR principals of centralised collection and control of masses of difficult to sort information. Look for those principals to morph, slowly we’d suggest, so only those in the know realise what is really going on, into a project that creates something that is far more distributed data, open systems and API friendly. Look for that system to somehow facilitate access to a variety of distributed, and largely patient- and doctor-owned and centred, data at the point of care, where it is fresh, relevant, has context, is alive and important.
If we just get an upgrade of what we have now, which will be easy to spot, then the powers that be will have decided that the gravity and momentum of the MHR was too politically dense to risk changing tack. If this happens, the ONA must demand real measurement that would ensure that the expense and setup is returning demonstrable value somewhere. Somewhere before we spend the next billion or so, at least.
Also look for the ADHA to subtly but surely start to put a lot more emphasis on other projects, like it has with electronic prescriptions.
There is hope that it will go this way. Has anyone noticed that no one even talks about the MHR much any more?
That it just doesn’t come up a lot any more could be the first sign of the new leadership letting it drift . Maybe we could even abandon the idea of replatforming it if no one brings it up any more in Canberra, and use the money somewhere else.
A good example of how to do this might be the COVIDSafe App.
This was a mega idea, and quite a politically important one at the time it was conceived.
We spent millions initially developing it, for a great purpose – contact tracing efficiency – and then we spent seven million on advertising it. We even started to threaten people with denying them access to things like sporting venues if they didn’t download it. But people stubbornly resisted it, a bit like they did the MHR, until we forced it on everyone with opt out, and upset most of the medical community.
COVIDSafe didn’t work from day one. Looking back, it was a seriously crap way to solve the problem of electronic contact tracing. But perhaps the government can be excused for pushing it in the heat and desperation of our early moments of COVID panic.
Now we have compulsory QR-based contact tracing apps in every venue and you suspect over time this will morph on your phone into something quite automatic, that you are used to and happy to provide access to.
There aren’t any privacy objectors like there were with the COVIDSafe app. Not many anyway. It’s distributed to your local restaurant or sports venue, and you don’t see anyone refusing to use it. You mostly see people competing with each other at venue entries to do the right thing. Common sense, technology and utlity ended up solving what COVIDSafe was originally designed to do…mostly anyway.
That is what is most likely to happen with the MHR. Like COVIDSafe, the intent was right, but the idea of how to solve the problems people wanted solved in digital health and patient data, was always pretty bad.
In the not too distant future your mobile phone will talk directly to your GP’s PMS system, to medical clinic databases, to your insurer databases, and get updated with the most important information about you, that you want updated. And as you travel from health service to health service and city to city your MHR will travel with you and update via the cloud as it goes.
We know this is likely because it’s already happening in parts of the US and Scandinavia. It will be intuitive, handy and an obvious thing to do for most people. No need for opt out.
Facilitating something like this would surely make a good new camel for the ADHA.