Just when we thought we would have a day off from the continuing news-flow of issues and problems we had this appear.
Punctuation a stumbling block for e-health
4th Jul 2012
Medical Observer has found patients with apostrophes or hyphens in their name cannot register for an e-health record, as the government scrambles to get the rest of the patient registration process working.
Patient registrations were originally due to be made available online, via telephone or in person at a Medicare office from 1 July, before the government signalled online registrations had been scrapped.
Online registrations were briefly made available earlier this week but have since been taken offline again, along with the consumer portal patients were supposed to use to access their records.
A health department spokesperson said the department had been testing the performance of the system and the related links.
When MO attempted to use the telephone registration system yesterday the operator said an apostrophe in the surname to be registered could not be entered into the system, and that all names with special characters would require an update of the system before they could be entered.
Lots more here:
Additional coverage of the issue is found here:
E-health online registrations can't handle names with hyphens and apostrophes
- by: Fran Foo
- From: The Australian
- July 05, 2012
IF Health Minister Tanya Plibersek's husband tried to register for an e-health record he would have no such luck.
The issue lies with Michael Coutts-Trotter's name: it has a hyphen and the newly launched, multi-million dollar personally controlled e-health record system hasn't been built to accept such characters.
As well, people with apostrophes wouldn't be able to register.
"The system hasn't been built for that," a government e-health hotline representative said. "It cannot accept those special characters".
She said if people with hyphens or apostrophes tried to register someone would "take down their details and call them back because they can't register".
A Health Department spokeswoman said the "issue has been picked up in our testing and is being addressed as a matter for urgency".
"Anyone affected can register in writing or contact the e-health telephone line to provide their details and they will be notified when the issue is resolved," the spokeswoman said.
The system had a low-key launch on July 1, with registrations only available via phone or at Medicare offices.
As the system went live, people couldn't enter their personal information, medical history and medication details as the consumer portal was unavailable.
More here:
For those of a technical bent there is a detailed note on the matter - with relevant standards and so on you can read here:
Validating Name Characters
Posted on July 4, 2012 by Grahame Grieve
Well, the pcEHR go-live hasn’t gone that well. One particular feature that’s attracted some attention is that fact that the pcEHR won’t accept people with some unusual characters in their surnames.
From http://www.medicalobserver.com.au/news/punctuation-a-stumbling-block-for-ehealth:
Medical Observer has found patients with apostrophes or hyphens in their name cannot register for an e-health record, as the government scrambles to get the rest of the patient registration process working.
It sounds like a glaring oversight… only, just what characters do you need to allow in a patient’s surname? I suspect that real experts would be fairly circumspect in commenting on this – it’s harder than it looks.
Full blog is here:
In response to all this I had a message from a colleague. It read:
“Well, if my Icelandic grandchildren came to live here we'd need ö. As their "surname" is Börgarsdottir (with an accent on the "i" as well).”
I only have two comments.
First - this is the sort of problem that is found when one bothers to actually do some basic piloting and testing before ‘going live’ with a national system. Clearly the efforts to test and pilot the NEHRS System has been inadequate. Had the testing been done a rather humorous but ultimately just hopeless outcome could have been avoided.
Second - I reckon you are entitled to have your name recorded as you desire. The system needs to suit all potential users - not force anyone to change or modify name. Really that is just silly for a health system to not provide such flexibility - especially in such a multicultural nation!
I wonder what will turn up next week? In the meantime I agree with the comments suggesting we all need to hear, formally and on the record, from the DoHA and NEHTA leadership regarding all the issues that are now out there.
David.
16 comments:
The following quote is from the National Health Data Dictionary, funded by the Commonwealth, and at the Australian Institute of Health and Welfare site. It defines the rules for family name when used in Health and Community Service-based systems. Seehttp://meteor.aihw.gov.au/content/index.phtml/itemId/286953
"Punctuation:
If special characters form part of the family name they should be included, e.g. hyphenated names should be entered with a hyphen.
Examples:
- hyphen, e.g. Wilson-Phillips
Do not leave a space before or after a hyphen, i.e. between the last letter of 'Wilson' and the hyphen, nor a space between the hyphen and the first letter of 'Phillips'.
- apostrophe, e.g. O'Brien, D'Agostino
Do not leave a space before or after the apostrophe, i.e. between the 'O' and the apostrophe, or a space between the apostrophe and 'Brien'.
- full stop, e.g. St. John, St. George
Do not leave a space before a full stop, i.e. between 'St' and the full stop. Do leave a space between the full stop and 'John'.
- space, e.g. van der Humm, Le Brun, Mc Donald
If the health care client has recorded their family name as more than one word, displaying spaces in between the words, record their family name in the same way leaving one space between each word.
Registered unnamed newborn babies:
When registering a newborn, use the mother's family name as the baby's family name unless instructed otherwise by the mother. Record unnamed babies under the newborn Name type.
Persons with only one name:
Some people do not have a family name and a given name, they have only one name by which they are known. If the person has only one name, record it in the 'Family name' field and leave the 'Given name' field blank......" etc
Every health system developer in Australia would be aware of these rules/standards and will have specified the requirements and tested for these rules. How is it that such an important system as this, relying as it does on matching family name as a key component for the identifier along with date of birth, sex Medicare number has it so wrong?
Surely some of the 64 HIGH PROFILE TRUSTED CLINICAL LEADS whose names appear on NEHTAs web site can't have all lost their tongues.
http://www.nehta.gov.au/about-us/clinical
If I was a NEHTA or DOHA employee, who had been working my heart out to get this over the line for the last 6 months, I would be feeling pretty abandoned by my leaders right now.
Through their silence, they are allowing a negative story to be the only story, and that story quickly will become the received wisdom. That's what happened with pink batts - a program which had a BETTER safety record that industry standard but which nonetheless got tarnished with the unsafe label because no one defended it when things started to go wrong. Same will happen here. Silence creates negative space, literally.
Anonymous 7/05/2012 06:07:00 PM:
It's pretty hard to defend the indefensible! But it IS a management failure. First, as has been pointed out, implementation should have been in accordance with the National Health Data Dictionary. Second, the system should have been subject to thorough testing before it went live. The fact that it has not been tested is now laid bare, which raises the question "what other faults have gone through undetected?"
NEHTA and DOHA's leaders should be stating one thing right now:
Mea Culpa
And following on from that, we will do better and be openly held accountable for doing better to cease the incessant historical and needless spin that has led to this outcome.
No longer is "everything tracking to its critical path". Arguably this is a cluster of a soft launch and if there is any true leadership at DOHA and NEHTA, it will be working overtime to correct things, minimise the damage and erosion in confidence to ehealth and fix their issues swiftly, openly and transparently.
Going to ground with head in sand is not what true leadership does, so can the guilty parties make amends and fix it, or resign and get out of the way for others more capable in the succession plans to clean up this PCEHR mess.
A system that can't accept hyphens and apostrophes in names is laughable in this day and age. Just type "o'" or "smith-" or "van der" into Google and see what happens in "real time".
A $467M Irish Joke alright. Although I don’t think the Tax Payers are or will find this amusing.
The nehta employees were abandoned a long time ago...and given the recent exodus, even more so in limbo.
"First, as has been pointed out, implementation should have been in accordance with the National Health Data Dictionary"
Umm, actually, no. The national health data dictionary is too focused on reporting, and often not really appropriate for production systems. As a consequence, it is often ignored in production system design, even when, as in this case, it has useful content. It doesn't have teeth, but the standards do.
This has been such a very basic requirement for any software application for so long (since at least 1983 when the original NSW PAS system could cope with it and also offer soundex searching to identify patients by near name matches eg Smith Smythe)that I find it incredible that any modern software developer could ignore this in a system implementation of this nature and scale.
At best haste to get something to meet deadline no matter the consequences - at worst incompetence on such a massive scale as to be breathtaking!!
I should add parenthetically that many many commercial software systems offer this capability as absolutely standard functionality.
This names fiasco is not something that should be picked up in testing. Handling of valid names should have been a very basic, fundamental requirement.
Apparently not.
So we have a new or changing requirement.
Which gets back to:
The most reliable and consistent predictor of a failing project is unstable requirements.
All the signs of more unstable requirements are there.
But Grahame.... the Australian Standard for Healthcare Client Identification, as published in the Standard Australia site (with BIG TEETH) is based on the National Health Data Dictionary see this reference from within that standard:
"National Health Data Dictionary (NHDD): Published by the Australian Institute of Health and Welfare (AIHW), the objectives of the Dictionary are to establish a core set of uniform definitions relating to the full range of health services and a range of population parameters; promote uniformity, availability, reliability, validity, consistency and completeness of data; accord with nationally and internationally agreed protocols and standards, wherever possible; promote the national standard definitions by being readily available to all individuals and organizations involved in the generation, use and/or development of health and health services information. Source: http://www.aihw.gov.au".
And as you will know, most health service systems used these standards directly in their systems - because many of the HL7-derived standards required them for interoperability, in addition to the ability to report morbidity etc.
And specifications for transactions between say clinical systems and the HI Service, and clinical systems and the PCEHR rely on consistent data formats to verify IHIs.
"Australian Standard for Healthcare Client Identification, as published in the Standard Australia site (with BIG TEETH) is based on the National Health Data Dictionary see this reference from within that standard: National Health Data Dictionary (NHDD): Published by the Australian Institute of Health and Welfare (AIHW), the objectives of the Dictionary are to establish a core set of uniform definitions relating to the full range of health services and a range of population parameters; promote uniformity, availability, reliability, validity, consistency and completeness of data; accord with nationally and internationally agreed protocols and standards, wherever possible; promote the national standard definitions by being readily available to all individuals and organizations involved in the generation, use and/or development of health and health services information. Source: http://www.aihw.gov.au".
Yeah, got to love that. Just another standards reference at the head of a standard that's referred to at the head of different standard, which is the one that you use. But so you provide lavish praise upon the NHDD in the standard, but then the actual field contains incompatible rules... what does that tell you?
The meaningful purpose for our ehealth system should have been an ehealth framework that facilitated and supported cyclic improvement in long term health outcomes for all Australians.
We should have planned for, and developed, smarter frameworks to employ information in a meaningful way to improve all related areas and obtain comparative measures of those improvements over time; the quality outcomes of healthcare at the coalface, national health and medical research priorities and outcomes, long term population health, national productivity, PBS, hospitals, ..., etc.
Every review that has ever been worthy of its consultancy fees has damned the practice of 'silo-ing' information.
Yet our system is all about health information 'silos' and exchanging info between 'silos'.
The most vulnerable consumers in our communities, the sick, the aged, and newborns are being encouraged to register without the same benefit of transparency that this blog's readers enjoy, without being duly cautioned by anyone who claims to be representing them.
Several comments identify the real culprits in this mess: NEHTA management. So many of the people in the trenches are talented individuals who have a commitment to the ideals they think NEHTA stands for (I was one of those believers), yet they are repeatedly let down by the incompetent fools at the top. My own experience was that the managers are so busy enforcing NEHTA's own rules concerning their employees, such as spending tens of thousands on witch hunts to find bloggers, that they forget the organisation's real mandate: better health outcomes.
The most frustrating part of this saga is that the fools at the helm will probably not wear the mud. Their mates outside NEHTA will offer them another plum assignment thanks to the incestuous revolving door that is the Australian health bureaucracy.
I wonder how far into the system this names issue goes?
How about data within NASH and the IHIs? And their interfaces?
Changing data definitions throughout a system is one of the most complex and error prone things that can happen to a project. For something as fundamental as identifiers it is almost back to square one. And all testing needs to be re-done.
Maybe NEHTA/DoHA should let everyone know the situation. After all it is "our" system - we are paying for it.
They will probably try to make light of it - "a small glitch, to be expected, a teething problem..." and so on. However, there is a big mamma elephant in the room and she has a big tattoo that says DATA QUALITY. If they can't get this basic fundamental field right, when there are national standards already in place that all other health systems are obliged to follow, then what does it say about the data quality of the clinical data to be shared in this important national system.
Let's hope they have a data quality strategy in place and being implemented at every stage of this project.
Let's hope they have a data quality strategy in place and being implemented at every stage of this project.
If they do have a data quality strategy in place then it isn't being implemented very well.
IMHO the smart money is on no such strategy.
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