The submissions to the PCEHR Review being conducted for the Health Minister (Mr Dutton) closed on Friday 22, 2013.
In the week leading up to that date I has conversations with quite a wide range of people regarding their proposed submission - with the obvious comment that many I chatted with had views not awfully different from mine - but often with quite difference emphasis.
Despite the following injunction to those officially invited to respond we have had some public comment.
“A submission to the review Panel becomes a panel document, and must not be disclosed to any other person or published by the submitter either in print or digitally. Unless you have requested that the submission remain confidential, it may be published, after the panel has received and examined it and authorised its publication.”
Among those who have blogged on the issue (and were not invited to submit) we have had these (excluding mine that went up last week).
PCEHR. How not to build an Information System
You would have thought the most obvious thing to do when building an Information System is to have at least some understanding of the information you want in it.
Not the PCEHR.
As I explained in my unsolicited submission to the PCEHR review team:
My opinion is that, in the case of the PCEHR, the root cause is a simplistic approach to the “problem” of Health Information. This problem has not been identified or analysed and its solution has not been defined. The PCEHR has been treated as an IT system not as a Health Information System. This is not unusual in large scale IT projects. The large costs are in the technology and the project and so they attract the attention of senior managers and project managers. To them information is just the stuff that goes into and comes out of the IT. There is no direct cost associated with information.
What senior managers and project managers fail to understand is that the value of the system lies in the information, how it is defined, managed and processed. There is no value in the technology, only cost.
It is worth examining the NEHTA document, High Level System Architecture, PCEHR, Final, v 1.35, November 2011. This is supposed to be a definitive description of the PCEHR system. Unfortunately it is silent on the topic of the Health Information that the system is supposed to be managing.
As an absolute minimum there should be an Information Architecture, Entity Relationship Diagrams and Data Flow Diagrams at both the conceptual and logical levels.
These documents should cover, not only the information within the PCEHR but the broader context including information in other systems and interface requirements including, but not limited to standards. There should also be discussions on information ownership, privacy, security, legal issues, data accuracy, data matching and a full description of the lifecycle of health information. Some, but nowhere near all, of these have been raised and discussed individually and from a technical perspective, but not in a comprehensive, holistic manner. Given that all these issues are inter-related, it is not possible to deal satisfactorily with them separately; they need to be considered holistically.
Without these artefacts the rest of the documentation is useless. The High Level System Architecture contains none of these, there are no references to other documents which might contain them and there is no evidence of any such documents on the NEHTA website or anywhere else.
As a highly experienced, professional system developer and an IT architect certified to international standards, my opinion of this document, and other architecture documents published by NEHTA, is that they are woefully inadequate and demonstrate a total lack of competence when it comes to understanding Health Information.
The lack of attention to Health Information means that an Information System has been created without an understanding of the information within that system. The consequences will (not might, but will) be significant rework as they try to correct for the failings in the fundamental design; errors in the system; a failure to meet the needs and requirements of users; and breaches of security and privacy.
This failure to understand what information problem the PCEHR is supposed to address is just one of many failings of this initiative; however it is the most important and is the one that will cause the most trouble, assuming that the PCEHR is not cancelled.
My full submission is here (Link now fixed)
The original blog is found here:
Second this was pointed out to me - by the author:
Underlying Issues for the pcEHR
Posted on November 17, 2013 by Grahame Grieve
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?
Lots more here:
The Australian Privacy Foundation has made their submission available here:
I have also heard there are a range of the usual stakeholders also contributing (MSIA, ACHI, HISA, CEA, CHF, some Medical Colleges etc.). From Senate Estimates we also know DoH and NEHTA will also be contributing.
With all this is am really hearing three main messages.
The first is that there are some real issues around the information integrity, reliability and quality of what is held in the PCEHR.
The second is the increasing recognition that it is very hard to be sure just who the PCEHR is actually meant to be used by and just what is actually meant to do given all the issues around usability, workflow, liability etc.
The third is increasing concern regarding the governance and performance of those who are managing the program.
The next issue will be to see if all the submissions get released and after that just what the panel concludes should happen.
For what it is worth there are very few people I have chatted with that do not see the need for major and rapid change - at a minimum. Time will tell I guess!