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!
David.
Did you ask any patients who are using it what they thought?
ReplyDeleteWell I am a consumer who has one and I think it is rubbish.
ReplyDeleteThe fact that almost no one who has one is using it tells you all you need to know!
David.
250 submissions have been invited!!! We have consulted widely Minister and we have concluded the PCEHR approach could have been handled better. Even so there is a strong body of support for the PCEHR and some of the work needs to be tweaked to get the desired outcomes. However, we have concluded that for the present the focus should be more on inter-connectivity between vendors' solutions whilst putting the PCEHR on the back burner in the interim.
ReplyDeleteAre we about to witness a reincarnation of HealthConnect albeit under a different moniker; same people in charge all doing the same things under a different banner with lots of money to spend? You decide.
We will all have to wait and see if what springs out is a 'change management strategy' rather than an actual project - which happened the moment Mr Hockey told Mr Abbott how much HealthConnect would cost!
ReplyDeleteDavid.
Well if change management means changing the management - I for one will not complain.
ReplyDelete"Well I am a consumer who has one and I think it is rubbish."
ReplyDeleteThat's most likely due to your bias. I have encountered three patients so far who found it a valuable aide-mémoire (both at home and during a consult). The PCEHR may be rudimentary, but that doesn't mean it doesn't have value.
"I have encountered three patients so far who found it a valuable aide-mémoire (both at home and during a consult). The PCEHR may be rudimentary, but that doesn't mean it doesn't have value."
ReplyDeleteA billion dollars to replace a word file or a small note-book. Not value to me!
David
You misunderstand. This is not information that the patient necessarily had access to in the first place or did not remember to write down (a common situation - too often patients are too preoccupied with what's happening to them to think about recording information). Or, the information was valuable in an indirect way. For example, PBS feed used by a patient to retrace a recent health journey and bring a specialist up to date.
ReplyDeleteNot that more than 1 in a 100 specialists even have access - and when seeing a specialist the patient should have a referral with the information. With the GP their computer should hold the information to explain to the patient.
ReplyDeleteMy view is that the PCEHR is a solution in search of a problem.
David.
Surely you know that no clinical information system holds all information about a patient's health context? Systems are designed to record data resulting from isolated care events. But when data from various systems are brought together they are greater than the sum of their parts.
ReplyDeleteWithout the patient, clinicians do not have the full picture. It's a partnership (admittedly, most patients probably don't see it that way).
Dear 11/26/2013 08:49:00 AM
ReplyDeletePlease do not confuse the general concept of an electronic record that can be shared, and the local instance of that concept that is the PCEHR.
No one is suggesting that we don't want good electronically sharable records. What many of us do complain about is that the PCEHR is a very poor, very expensive, instance of that general concept.
Separate arguments.
Expensive compared to what? How much should it have cost? This is new territory (especially given the national scale). If we knew *exactly* what we were doing it would be easier, cheaper, and better. But we don't. No one does. Those trying to implement an SEHR will encounter cultures (clinical, patient, vendor) that don't understand it. It's paradigm-shifting. PCEHR could be better. Fortunately, it seems it's possible to improve it.
ReplyDeleteExactly one of my major points.
ReplyDeleteWe should have started small and extensible - proven the model and then grown with something we knew works. There are models of SEHR already working for a lot less than the PCEHR that were ignored in the rush to create a national system for which there was no experience or business case - and which is now not working very well.
Bit sad that.
David
I agree with you on that one. Still, I'm glad we've got something now. Better than nothing. And we should concentrate on making it better (for patients, clinicians, and for integration with other systems).
ReplyDeleteI would argue the faults with the PCEHR - see my submission from last week - are essentially too fundamental to make the thing worth keeping. I do not think it is better than nothing.
ReplyDeleteWe need a fresh better planned start.
David.
All I hear is, band aids, band aids, band aids...
ReplyDeleteThis is not how you treat a gaping wound...
The bleeding will never stop unless you treat it at the core...
If there is public sentiment and industry buy-in for a SEHR then we should start again
For those who avoid hyperbole, incremental improvement is both pragmatic and desirable.
ReplyDeleteIn one sense the PCEHR's functionality is quite simple. So it should be straightforward to improve. But it's also rolled out on a nationwide scale. So even minor improvements become difficult to achieve.
The priority problems do not lie with the technology itself (i.e. this was no healthcare.gov debacle).
It's the process interoperability, and stakeholder engagement, and design approaches that need to be looked at.
Sorry. A flawed core approach remains a flawed approach. The technology - poor though it is - is irrelevant. My view it needs to be scrapped and a new and much better approach developed.
ReplyDeleteLipstick on a pig is what trying to fix it is about. Also a waste of money.
David