15 February 2023

Modernising My Health Record?

ADHA Insights MHR

Below is Mr Grahame Grieve’s reply to a recent Wild Health story in which he was quoted. It was originally published on his website, Health Intersections.

On Friday last week, an article by journalist Wendy John was published by Wild Health, in which I’m quoted as saying, regarding My Health Record (MHR) and the Strengthening Medicare Taskforce report:

“FHIR guru Grahame Grieve has advocated for interoperability standards in healthcare for over two decades. He said it is ‘hard to be excited about it,’ given the trajectory of the implementation of those ideas.

‘It’s basically the blueprint that we’ve been waiting for 20 years to be implemented and all we’ve gotten is a rather useless document database in the sky,’ he said. Mr Grieve said the challenge will be in turning the report into meaningful outcomes for strengthening Medicare.”

If I did say exactly that I did not mean too. Regardless I regret that those words somehow got into a story and wish to clarify what I meant or should have said here (aside: lesson learned, pay more attention when talking to journalists).

What I thought I said – and should have said – is that the MHR is a “a document database of limited use,” not “rather useless.”

It is a difference that matters.

There are two reasons why it is of limited use.

The first reason is that doctors do not upload documents to the MHR, because it is not worth looking at, because no one uploads documents to the MHR: and that has been a problem with it from the start.

Since CSIRO’s interoperability lead Kate Ebrill tells me that no good technical person can write anything at all these days without mentioning chatGPT, I asked chatGPT to explain this for me:

Me: “What would you call it if a system wasn’t worth adopting because no one else has adopted it?”

ChatGPT: “If a system isn’t being adopted because no one else has adopted it, it’s referred to as a ‘chicken-and-egg problem’ or a ‘network effect’. This occurs when the value of a system or product is dependent on the number of people using it, and thus, it becomes difficult to get people to adopt it because they see no one else using it. This creates a self-reinforcing cycle where the system fails to gain widespread adoption because of a lack of users, and the lack of users prevents the system from gaining value and becoming more attractive to potential users.”

The government’s response to this challenge has been to cajole, pay, and force clinical providers to upload documents to the MHR in the hope that this dynamic can be turned around. So, it is no surprise to find these words in the Strengthening Medicare Taskforce report (page 9):

“Modernise My Health Record to significantly increase the health information available to individuals and their health care professionals, including by requiring ‘sharing by default’ for private and public practitioners and services, and make it easier for people and their health care teams to use at the point of care.”

As far as I can see, that is the only concrete action in the whole report. But will it work?

Well, I’m personally pretty dubious, because of the second problem. See, the MHR is a list of past documents, records of things that happened – clinical events, prescriptions, dispenses, immunization. A frozen record of the past, with no way to communicate directly with the source system.

There is definitely a place for a historical record like this in healthcare, and an emergency doctor friend told me after reading the article that he does consult the MHR occasionally in the hope that it has something in it that will give him a clue what is going on with the patient, in the small number of cases where past records will help, and were the patient does have documents in there (the only documents in mine are my prescription/dispense documents).

But only when he really must. It is not an efficient way to browse the history (because it is documents that must be scanned by a human).

So, it is not “rather useless,” as that is a definite valid clinical use. But that is a system of limited usefulness.

Because what the MHR does not have is any sort of workflow collaboration or management, or even simple messaging between patients and providers. I have sat in meeting after meeting where clinical teams of various kinds have wanted to do something like interact with the patient to improve efficiency or effectiveness of care, and thought to use the MHR, but they cannot.

Not only does it not have the features that they want, but because of the political risk of a central government run system having problems, the only things that can be done with it are things that have run through multi-million dollar risk assessment processes, ones where the principle risk being managed is that risk of damaging the government’s reputation.

I cannot see the system that we have ever overcoming the network effect. It needs to be redesigned completely. Which brings me to this wording:

“Modernise My Health Record to significantly increase the health information available to individuals and their health care professionals.”

The big question is what “modernise” means. So far, all the ideas that I have seen the Australian Digital Health Agency announce have involved modernising the technical infrastructure that runs the MHR, including transitioning to a FHIR interface – which I am in favour of – but without redesigning the way the system works, with the attendant cost that would have.

Five years ago, the Australian Senate held an enquiry into the MHR and I made a submission saying that we needed to redesign it, and adopt a genuinely federated model, an open healthcare system, and that we needed that federated model to allow clinical teams and providers to use the system to fit their needs. And I am far from alone in this view.

Ms John’s article picks up on this:

“MHR is a centralised model where, in theory, all health records are uploaded and then distributed as required. However, the advent of cloud-based solutions and consumer demand for real-time data opens possibilities for distributed models, such as those in Denmark and the United States.”

A federated model that we are thinking of is one where all the clinical systems that treat a patient provide a common API to allow for exchange of clinical notes, diagnostic reports, making and receiving referrals, and collaborating on common patient management. Patients and clinical service providers can decide which systems to connect to, and patients can authorise this as necessary. In most designs, there is still a role for a central database as kind of a default system of record for all citizens, but it is not the only game in town.

For the mathematicians amongst us, what creates the network effect is when more participants turn into more connections, and exponentially rising benefits, instead of increasing the load on the central choke point, which eventually yields less benefit per participant.

But for the rest of us, an open federated system is one where your GP, your specialist and the hospital are all seeing synchronised records and communicating with each other seamlessly. And we get seamless care, instead of telling the same story again and again, trying to convince doctors that what happened really happened, and different doctors doing different things because they don’t know what each other is doing or thinking, or even who each other are.

The Senate committee’s response to the idea of a federated system was:

“While a federated model may have been preferable if the system was to be designed today, the committee acknowledges that a substantial investment has been made in the current system and that fundamentally redesigning the system would involve additional investment.”

The inevitable outcome of this response is that since then the Australian Digital Health Agency has done what the Senate said and tried to force the healthcare system to find a use for the MHR we have, rather than trying to build the MHR into something that the healthcare system will want to use.

I sure know what would have happened to any company that tried to do the same: they would go bust.

The agency is not a company, so it cannot go bust, and maybe that is the only way to solve this problem, but it sure looks like it is failing the normal government way to fail. And failing us too.

The big problem is that it is holding the whole country back while it tries to reverse the negative network effect.

The Strengthening Medicare Taskforce report may represent an opportunity to revisit this question; certainly the gap between the capabilities that are starting to be available in other countries that we have not yet even started working on is starting to become quite evident to the experts, and it will eventually become very obvious to the average voter when they cannot get the healthcare they see other people getting on other countries.

So, it really all comes down to ‘what does modernisation mean’? Like the rest of the report, it is just high level guidance, things that we should obviously do. But, how? Hardly anyone is going to disagree with the substance of what the report says, it is just going to be a matter of waiting to see what is made of it.

Once again, though, the report does make one thing crystal clear: digital health, for all its problems, is really the only game in town to transform the healthcare system.

So, it is time for us to take it seriously. Because we have not been for the last fifteen years.

This reply was originally posted on Health Intersections on 14 February 2013.