There’s an enquiry into the pcEHR at the moment. As one of the small cogs in the large pcEHR wheel, I’ve been trying to figure out whether I have an opinion, and if I do, whether I should express it. However an intersection of communications with many people both in regard to the PCEHR, and FHIR, and other things, have all convinced me that I do have an opinion, and that it’s worth offering here.
There’s a lot of choices to be made when trying to create something like the pcEHR. In many cases, people had to pick one approach out of a set of equivocal choices, and quite often, the choice was driven by pragmatic and political considerations, and is wrong from different points of view, particularly with regard to long-term outcomes. That’s a tough call – you have to survive the short-term challenges in order to even have long term questions. On the other hand, if the short term decisions are bad enough, there’s no point existing into the long term. And the beauty of this, of course, is that you only find out how you went in the long term. The historians are the ones who decide.
So now that there’s an enquiry, we all get to second guess all these decisions, and make new ones. They’ll be different… but better? That, we’ll have to wait and see. Better is easier cause you have hindsight, and harder because you have existing structure/investment to deal with.
But it seems to me that there’s two underlying issues that need to be confronted, and that if we don’t, we’ll just be moving deck chairs around on the Titanic.
Social/Legal Problems around sharing information
It always seemed to me that in the abstract, the pcEHR make perfect sense: sharing the patient’s information via the person most invested in having the information shared: the patient. The patient is the sick one, and if they choose to hide information, one presumes that this is the same information they wouldn’t volunteer to their treating clinician anyway, so what difference would it make?
Well, the difference between theory and practice is bigger in practice than in theory.
And the thing I’ve heard most often in the last couple of weeks with regard to the pcEHR is “it’s neither fish nor fowl” – is it a clinical record, or a patient record? I’m sure that the enquiry will be inundated with comments about this, but there’s a deeper underlying question here: what’s the clinician’s liability in regards to sharing information? (both outgoing and incoming). If a clinician does not discover a condition because it’s not listed in the pcEHR, and they didn’t ask the patient, would it (ever) be an acceptable defense that you would expect it to be? Is that something that would come about naturally by osmosis (or something), or is there active cultural and legal changes needed here?
I’m not a clinician, but I rather think it’s the second. But there’s probably a mexican stand-off here – you couldn’t find out whether this would be reasonable till the (x)EHR is a Big Thing, and it won’t ever have any chance of being a Big Thing until this is resolved.
So the enquiry can recommend whatever it wants, but this underlying question isn’t in it’s scope, so far as I can see – and so it probably won’t make much difference?
Now I raise this – in spite of the fact I’m not a clinician – because it actually frames my second issue, and that’s something I do know about. The way it frames the second issue is that I don’t know whether the pcEHR is just a path for sharing information with the patient, or whether it’s actually intended to grow into the real patient care system that everything else is an extension of (the pcEHR documentation is a dollar each way on this issue, so I’m never sure). If the answer is the first – it’s a one way pipe to the patient, then my second issue is irrelevant. But I’ll still raise it anyway because lots of people are behaving as if the goal is a real healthcare provision system.
Lack of Technical Agreement
The underlying pcEHR specifications for clinical agreement are the CDA document specification stack, consisting of the “Core Information Components”, the “Structured Document Templates” (aka Structured Content Specifications), and the CDA Implementation Guides. At interest here is the Core Information Components, which say:
The purpose of the [X] Information Requirements is to define the information requirements for a nationally agreed exchange of information between healthcare providers in Australia, independent of exchange or presentation formats.
Then they say:
Note that some of the data elements included in this specification are required for ALL [X], whereas others need only be completed where appropriate. That is, a conformant [X] implementation must be capable of collecting and transferring/receiving all Information Requirement elements.
What this means is that these documents are a minimum required functional set – all parties redesign their systems to do things this way, and we’ll all be able to exchange data seamlessly.
There’s no discussion in these documents about the idea of systems doing extra pieces of data not discussed by the core information components, but the underlying approach really only works if there aren’t any. The problem is that this is “core” components – and that’s very much a reflection of the process – these are things everyone agreed to (where “everyone” turns out to mean, the people who were talking to NEHTA back then, which is far short of everyone who will implement). That leaves a lot of things out of scope.
So there’s problems here in two directions – what if systems don’t support the core components? What if they have other things?
Now the pcEHR was built on top of these specifications, and some parts of the pcEHR design expected that things would follow the core components – particularly, any part that implied data aggregation, analysis, or extraction. As long as the pcEHR is documents inbound, document navigation, and document view, the conceptual gaps the core information components leave don’t matter.
But as soon as you start wanting to do composite views, summaries, etc, you need to be sure about the data. And deviations from the Core Information Components make that impossible. And, in practice, many of the contributing systems deviate from the core information component specifications by not supporting required fields, adding extra fields, or having slightly different value sets for coded values etc. There was this expectation that all the systems would be “adjusted” to conform to these core information components. And some were, though sometimes in some strictly notional sense that the users will never use. But many systems never even tried, and it just wasn’t going to be practical to make them.
It probably sounds like I think the core information components are flawed, but I don’t really think they are – I think the issues I have listed should be understood as that we have found the limits of agreement within Australia in these regards. Given a much longer development time, a lot more money, and a lot better engagement, we could have added a few more fields, but I don’t think it would’ve made much more difference. The problem is the existing systems – they are different. And may be they could be rewritten, but that would cost a vast amount of money, and what would happen to the legacy data?
So any useful clinical leverage from the pcEHR in terms of using the data is pretty much a non-starter right now. Only the NPDR, where the prescribe and dispense documents are locked right down – only there do we have useful data analysis happening (and so far, we have only a few providers set up to push data to the NPDR. I wonder how others will go – but prescription is a fairly proscribed area, so this might be ok).
I don’t see how the enquiry can make much difference in this area either – this is a generational problem. I guess there can be lots of moving the deck-chairs around, and blaming the symptoms. That’s how these large projects usually go….