Comments on the senate enquiry on the PCEHR

Feb 26, 2012

Going through the recent transcript of the Australian Senate enquiry into e-health, I found this, from Vince Macaulay, spoken as a representative of the MSIA (I am also a member).

Even in the NEHTA specification as it is there is no intention to audit or manage that medication list, so until the terminology is in place it is going to mean that that medication list is going to become a major mish-mash of information from different people and different places and description of medication using different names. It is going to be extremely confusing. By going to a representation of the actual report from a prescription or the pharmacy dispensed record—by putting those into the PCHR—you are actually presenting the information in a readable format that the clinicians can understand, and it gets around those problems with terminology that we can move to at a later time. But in that initial phase, if we have that simplified format, we have safety risks that might not be involved otherwise.

Now I have a great deal of respect for Vince - he’s a clinician, a scientist, a standards producer, a software developer, and has owned his own medical software business. That’s a powerful combination that gives Vince great insight into the health interoperability space - but I’m going to disagree with him anyway.

There’s several problems here:

  1. Vince is correct that there’s no intention to audit or manage a medication list as part of the PCEHR. A managed medication list is the holy grail of EHRs, of course, but it’s one of the highest mountains to climb, and so the PCEHR isn’t going there for the foreseeable future. So when he says “that medication list is going to become a major mish-mash of information from different people and different places and description of medication using different names”, **what does that mean? There won’t be a medication list to be a mish-mash. Therewill**be a series of documents that each make a set of statements about a patient’s medications from a different perspective. And that will be confusing - but less confusing than it is now, when those documents aren’t even available. (Actually, Vince implies that this is about pharmacy dispense records, but as I readthe ConOps, these aren’t even in the PCEHR)
  2. The second problem is that there’s again a misunderstanding of CDA and the notion of a single document that contains both presentation and structured data. The implication above is that the PCEHR is using structured data, and that the problems this will cause could be resolved by not sending structured data, and using a human readable form for clinicians instead. But this is a false dichotomy - CDA includes the human readable form. That’s one reason why the PCEHR is built using CDA documents. Structured data is added to foster the gradual growth of secondary reuse and clinical decision support. Few people have any illusion that this reuse will happen from day #1 - to get good use, you need good data, and the clinicians will need to do better record keeping to enable it. While there will be many documents with properly populated structured data (and some with Snomed/AMT too) from day #1, the willingness to use the data, and put effort into improving the other documents will only happen when clinicians see useful outcomes. CDA documents allow us to have human readable documents, and then to gradually grow into populating and using the data without changing the technical base.
  3. It would be great if health industry as a whole would take up AMT quickly. That it hasn’t says a little about AMT and a great deal about the health industry (per my previous point, and also see my previous post about thevalue of standardsfor part of the reasonand this one too). But even if everyone was using AMT (or any other medications coding system) that still wouldn’t mean we’d could  build a coherent medication list. Even if we got every dispense entirely fully and correctly coded, and every administration, we still won’t have a useful medication list unless we can get right up close to the patient and somehow automatically know what they actually take. In the meantime, a useful medication list has to built the hard way by a human. Properly coding this with AMT etc would be useful and helpful for building it, but it isn’t the biggest problem.
  4. The thing I really wanted to comment about was the underlying assumption that I commonly run into when developing interoperability specifications. The thrust of the argument here is that if the NEHTA specifications provide structured data, this**will **lead to unsafe medication lists. That’s because implementers who aren’t at the table are obviously too dumb to figure these problems out for themselves. Now it’s certainly possible - implementers can go out and do amazingly stupid things (btw, in my experience this is often because some clinician asked for it). But this argument, which I see fairly often in lots of contexts, is that because it’s possible for a feature to be implemented badly, then it shouldn’t be present at all, whatever functional outcomes might be possible from it.At heart, this is a governance problem. There’s a natural desire to control things - that’s what drives people to play in the standards space. And people take their duty to clinical safety seriously too. But in most contexts, it’s wrong to keep useful stuff out because it might be abused. In this case, the limitations of the structured data for medications are well understood, but there are still legitimate uses for it.

Vince is a friend, and as I said, knows most of this stuff well indeed. I can only assume that the pressure of being in the senate and making statements rather than having a useful discussion lead to Vince not saying quite what he meant. I still thought it was worth commenting on though. And I certainly disagreed with what was reported as the official MSIA position at the senate enquiry - that the PCEHR should be built on PDF documents. Though I’m not sure that’s quite what the MSIA said to the enquiry after I read the transcript - perhaps that was just what the media reported.

p.s. I’m looking forward to an active comments thread on this one, but note that with regard to the PCEHR, many of the most knowledgeable people (all NEHTA employees) are not allowed to comment here. There’s a lot I’m not allowed to comment on either - else I’d have taken up much meatier issues from all the comments at the Senate enquiry.