openEHR

Representing FHIR clinical content in openEHR

Over the past few days I’ve attempted the task of representing the FHIR Skin and Wound Assessment profiles using openEHR archetypes.

I note that there are three Skin and Wound Assessment FHIR Implementation Guides available online:

  1. "Full CIMI" version – which is the one I chose to model;

  2. Federal Health Information Model (FHIM) version; and

  3. Mitre’s ‘mini-CIMI’ version.

I’m a clinical modeler, a clinician by background, so I’m always looking at how we can best represent clinical data in ways that are friendly to grassroots, non-technical clinicians of any sort. The FHIR IG is a tough beast to decipher, despite my experience of gathering patient requirements and turning them into implementable specifications for more than a decade.

My intent as I started this work was specifically that as a clinician I didn’t want to have to fully understand the FHIR representation. I wanted to be able to look at the clinical data and recreate it using my familiar openEHR tooling and representations.

I estimate that it has taken me nearly 2 full days of work – much more than I anticipated - and mostly to trawl through the myriad of online pages for each FHIR resource and associated profile, then to piece together the connections visually so that I could create/reuse appropriate openEHR archetypes and templates. The openEHR representation didn’t take long, largely because of reuse. It was the analysis that was the time killer.

Despite all of that effort, I am still not confident that I’ve got it right. But the following post reflects my experience, plus learnings and some queries.

My modelling assumptions

The three base clinical representations that I’ve gleaned is the Wound Presence Assertion, the Wound Absence Assertion and the Wound Panel Assessment.

Rightly or wrongly, my openEHR templates assume the following:

  • ‘Wound Presence Assertion’ profile is the equivalent of our recording a diagnosis and overview of a wound – so I’ve created a Wound Presence Assertion template, based on the EVALUATION.problem_diagnosis);

  • ‘Wound Absence Assertion’ profile is the positive assertion that a wound is excluded or not present; and

  • ‘Wound Assessment Panel’ is the equivalent of clinical examination findings about a single, identified wound – so I’ve created a Wound Assessment Panel template, based on the OBSERVATION.exam archetype.

  • If FHIR components were modelled as 0..1 occurrences then I added them to the archetype at the root level – see the size measurements and edge related data elements in the Examination of a Wound CLUSTER archetype.

  • If FHIR components were modelled as 0..* occurrences then I added them as repeatable internal cluster groupings – see the Tunnelling and Undermining clusters in the same archetype.

openEHR Representation

You’ll note that I haven’t created a template for the Wound Absence Assertion. I’ll be curious to understand the use case from the FHIR modellers but I cannot understand the use case where a clinician will explicitly record that a wound is absent, not there. They will record that a previously known wound has healed over, or that the skin in the area is normal. But to record that a pressure ulcer on the right buttock is absent – I don’t think so, not even in a medico-legal scenario! If someone can provide me with a use case, I’m happy to reconsider…

I’ve uploaded the resulting two templates and the associated archetypes to a public incubator on CKM. You can view them all here: https://ckm.openehr.org/ckm/#showProject=1013.30.9.

The two templates comprise 6 reused archetypes, and I created two new archetypes:

The clinical content within the FHIR IG is generally very sound, and I can see that a lot of work has gone into the development of it and especially the value sets. It is a very useful resource, if you can discern the content in amongst all of the rest of the tech spec. I must admit I got very frustrated and very confused and had to restart a few times.

Once I’d teased it out, I’m very grateful to those who did the hard yards of clinical analysis that underpins this Skin and Wound assessment. Credits on the IG attribute the domain content analysis to Susan Matney from Intermountain Health. I have some other questions for clarifications and would like to discuss a few issues but otherwise this is a really sound piece of work and I’m very pleased with the end result in openEHR.

The templates are up on CKM for you to take a look at:

The rather ugly CKM default UI for templates is deliberately designed for displaying the individual data elements and most of the relevant constraints – much easier for a clinician to be able to review and approve from a content point of view. CKM doesn’t display the URL to value sets, although if you download the .oet and .opt files you will find them safely stored within the code.

Questions, issues

General modelling

I’ve reconfirmed that the openEHR reference model is a godsend. That the data types have set attributes is a given and doesn’t need to be represented over and over again is something I now appreciate enormously, including null flavours etc. Brilliant. There is so much endless repetition in the FHIR resources for RM related data and it takes ages to locate the real clinical data amongst everything else.

Wound Presence Assertion

  • Anatomical location of the wound is only recorded in this model. I’m not so sure about whether this is a good idea. I think that anatomical location should also be modelled for each examination event (ie included in the Wound Assessment Panel) so that what is being examined is clear and unambiguous. At present the anatomical location of the wound represented by the Assessment Panel appears to only be associated with the Presence Assertion via a common identifier (WoundIdentifier).
    Note that I can only find the Anatomical location model in the Logical model and not in the Profile, so maybe I’m missing something?

  • In the logical model, Laterality is represented as ‘Unilateral left’, ‘Unilateral right’ and ‘Bilateral’. I totally agree with the left and right but I have a major problem with identifying one (or more) wound(s) as ‘bilateral’. ‘Bilateral’ should probably not refer to direct observational exam findings at all, but is may have some value in recording conclusions. For example, in examination of each ankle, the finding of pitting oedema may be made, but each side is likely to need explicit recording of different severity or association with ulceration etc, so the findings from each side should be recorded one separately. However, the conclusion of the clinician, at a higher level of abstraction in a physical findings summary or as a diagnosis, may well be bilateral ankle oedema, but it is not advised for use at the point of recording the examination findings.
    Given that this representation of anatomical location is in the Assertion and as best I can tell the concept being modelled is a single Wound (SNOMEDCT::416462003), the notion of a bilateral wound is not appropriate.

  • Clinical status values – now these were tricky. We have an existing ‘Problem/diagnosis qualifier’ archetype. It is a messy beastie, largely because clinicians are notoriously messy at how they record these kind of things. The FHIR value set used in this template comprises values from 4 (yes, four) data elements that we have identified as having completely different axes in our archetype. The FHIR value set is drawn from parts of each of our ‘Active/Inactive’, ‘Resolution phase’, ‘Remission status’ and ‘Episodicity’ data elements.

Wound Assessment Panel

  • As above, I’m concerned that there is no explicit recording of the Anatomical location/laterality parameters so that we can track examination findings over time, especially if there are multiple wounds. An identifier as a connector seems a little flimsy for me.

  • The concept seems to be a generic wound, but the data elements seem to be focused on recording the findings of an open, ulcerated lesion in reality. If the wound was a long laceration, for example, there are parameters missing such as beginning and end point, relative location to a body landmark. An animal bite might also be difficult to record at the best of times, and something simple like a narrative description would also be helpful.

  • There is a data point about a pressure ulcer association, with two values – device and pressure site, which reinforces the focus on a pressure ulcer and is very specific. I have modelled that same data point as a repeating cluster pattern of a ‘Factor’ associated present/absent attributes to make this model more applicable to a range of wounds.

  • Tunnelling is a tricky concept to model. In the FHIR model, tunneling seems to assume that the tunneling radiates out from the edge of the wound but doesn’t allow for deep tunneling from the middle of the wound to be recorded.

  • The use of a clockface direction is common in a few clinical scenarios, including this one. However the openEHR experience has identified that in order to represent it accurately a few assumed items need to be recorded, such as identification of the central landmark around which the clockface is oriented, as well as the anatomical landmark that identified the 12 o’clock reference point. See our recently published Circular anatomical location archetype.

  • The Undermining model is represented in the archetype/template as a repeating CLUSTER to allow multiple measurements of the amount undermined in different directions. In the FHIR model, the length and direction are both optional. In the archetype I’ve made the length mandatory as there is no point recording a direction by itself.

  • I did not model exudate volume in the template as it is measured, and it is not clear to me how you measure a volume at an examination (assuming this assumption about the recording context is correct). Rather it is usually recorded over time, and so does not seem to belong here. I did model the Amount, with a value set that is not available to view, as I assume it is descriptive and could be appropriate here.

  • Episode is modelled within this context, however it seems to me that it is probably better placed in the Assertion. See the ‘Episodicity’ data element within  the Problem/diagnosis qualifier archetype.

  • Similarly ‘Trend’ feels a little tricky in the context of examination findings. I guess that it could be useful if part of a sequence of exam findings and if it correlated back to the longer timeframe of ‘Course description’ narrative within the Problem/Diagnosis archetype.

  • There are a few data element which record Yes/No/Unknown answers as though it is answering a questionnaire within the context of recording exam findings. In openEHR we tend to record these as findings that are Present/Absent/Indeterminate so that we can bind, arguably, more meaningful codes to each value and not mix history-like recording with observations.  


For a grassroots clinician to review the content there is no doubt that the IG is next to impossible. Perhaps the FHIR community has a more clinician-friendly view that I’m not aware of. It is absolutely needed!

Wouldn’t it be great if FHIR and openEHR communities could collaborate such that this CKM representation could be used to support the FHIR work… but I’ve probably said that a million times… or maybe more. Perhaps one day <sigh>.

A common data language is essential for digital health disruption

The lack of a common health data language has been ‘the elephant in the room’ for a very long time. Unfortunately, very few people acknowledge the need for a clinical lingua franca as a critical foundation for eHealth. The mainstream view seems to be that messages are/will be enough and that creating a standard language for health information is either too hard or too complicated. Is it really that hard? Or is that just the view of those with vested interest in perpetuating the message paradigm?

Journey to interoperability I

Despite some wins, the transition to EHRs has generally been much slower than we anticipated, much harder than we imagined, and it is not hard to argue that interoperability of granular health data remains frustratingly elusive.

Adverse reaction risk: provenance

Recording adverse reactions, allergies and intolerances to medications and other substances is universally regarded as a high priority for clinical safety. This is the ‘Adverse reaction risk’ archetype’s story - an international, cross SDO collaboration that achieved consensus. It demonstrates the potential value that comes if we choose to work together, rather than create more silos.

Bridging the interop chasms

True or false: if we want to achieve any degree of semantic interoperability in our clinical systems we need to standardise the clinical content, keeping it open and independent of any single implementation or messaging formalism?

Case Study: Clinical Engagement

Bridging the gap between the clinical experts and software engineers involved in eHealth projects is well known for being difficult and frustrating for both sides. The openEHR methodology is having great success in bringing the non-technical clinicians along with us on the clinical modelling journey.

Clinical modelling, openEHR style

The outcome of a program of coordinated clinical content standardisation provides a long term and sustainable national approach to developing, maintaining and governing jurisdictional health data specifications. It can form the backbone for a national health data strategy and is a key way to ensure that clinicians contribute their expertise to jurisdictional eHealth programs.

The Archetype 'Elevator Pitch'

I've been asked for the classic 'elevator pitch': How does a non-openEHR expert, non-geek explain the notion of developing a library of archetypes to their colleague or boss?

Preventing health data 'black holes'!

It really is not surprising that scientific data is disappearing all the time. But, oh, think of the value of this data - in terms of cost and knowledge. Irreplaceable. The original article from Smithsonian.com is here: The vast majority of raw data from old scientific studies may now be missing.

Some excerpts:

A new survey of 20-year-old studies shows that poor archives and inaccessible authors make 90 percent of raw data impossible to find.

...

When a group of researchers tried to email the authors of 516 biological studies published between 1991 and 2011 and ask for the raw data, they were dismayed to find that more 90 percent of the oldest data (from papers written more than 20 years ago) were inaccessible. In total, even including papers published as recently as 2011, they were only able to track down the data for 23 percent.

...

"Some of the time, for instance, it was saved on three-and-a-half inch floppy disks, so no one could access it, because they no longer had the proper drives," Vines says. Because the basic idea of keeping data is so that it can be used by others in future research, this sort of obsolescence essentially renders the data useless.

...

And preserving data is so important, it's worth remembering, because it's impossible to predict in which directions research will move in the future.

Seems to me that the openEHR approach to data definitions is an excellent candidate for preventing the health data 'black hole' too!

Non-proprietary, open data specifications are a key component for future-proofing irreplaceable clinical and research data.

Archetypes/DCMs MIA in SDOs

Curious to note that there is very little apparent interest in detailed clinical information models (DCMs) of any brand or flavour in the major Standards Development Organisations (SDO's) - they are effectively Missing In Action when compared to the likes of CDA and IHE profiles. The ISO 13972 DCM specification took a long and tortuous time to travel through the ISO TC 215 processes. Engagement with 13972 during its development, and from what I can observe now it is on the verge of publication has been rather sparse.  A further piece of work is now starting in ISO regarding quality criteria for DCMs but it also seems to be struggling to find an audience that understands it, or even cares.

I don't quite understand why the concept of DCMs has not been a big ticket item on the radar of the SDOs for a long time as it is a major missing piece of any standards-based framework. Groups like CIMI are raising awareness, alongside the openEHR work, so momentum is gathering, but for some reason it seems to keep a very understated profile compared to new opportunities like FHIR in HL7.

The work of messages, documents, profiles and terminologies are clearly important for interoperability, but standardisation of clinical content models working closely with terminologies can potentially make the work required to develop messages, documents, and profiles orders of magnitude easier.

Let me test a metaphor on you. Think of each message, document or profile as a sentence and each archetype or DCM as a word, a building block that is one component of each sentence. By focussing on the building a specific sentence, we are working backwards by trying to determine the components, and the outcome is still just that single sentence. However if we start by standardising the words/archetypes, then once they are stable it is relatively simple to construct not only one sentence for a specific purpose, but the potential is a much greater output in which many more additional sentences can be created using a variety of words in different combinations. If we manage the words (archetypes) as core building blocks and get them right, then we allow a multitude of possible sentences (messages/documents/profiles) to proliferate.

The ‘brand’ of archetype/DCM solution does not concern me so much as raising awareness that clinician-led, standardised clinical content is a significant missing and overlooked piece of the international eHealth foundations puzzle.

Technical/Wire...Human/Content

In a comment on one of my most recent posts, Lloyd McKenzie, one of the main authors of the new HL7 FHIR standard made a comment which I think is important in the discourse about whether openEHR archetypes could be utilised within FHIR resources. To ensure it does not remain buried in the rather lengthy comments, I've posted my reply here, with my emphasis added.

Hi Lloyd,

This is where we fundamentally differ: You said: "And we don’t care if the data being shared reflects best practice, worst practice or anything in between."

I do. I care a lot.

High quality EHR data content is a key component of interoperability that has NEVER been solved. It is predominantly a human issue, not a technical one - success will only be achieved with heaps of human interaction and collaboration. With the openEHR methodology we are making some inroads into solving it. But even if archetypes are not the final solution, the models that are publicly available are freely available for others to leverage towards 'the ultimate solution'.

Conversely, I don't particularly care what wire format is used to exchange the data. FHIR is the latest of a number of health data exchange mechanisms that have been developed. Hopefully it will be one that is easier to use, more widely implemented and will contribute significantly to improve health data exchange. But ultimately data exchange is a largely technical issue, needs a technical solution and is relatively easy to solve by comparison.

I'm not trying to solve the same problem you are. I have different focus. But I do think that FHIR (and including HL7 more broadly) working together with the openEHR approach to clinical modelling/EHRs could be a pretty powerful combo, if we choose to.

Heather

We need both - quality EHR content AND an excellent technical exchange format. And EHR platforms, CDRs, registries etc. With common clinical archetypes defining the patterns in all of these uses, data can potentially start to flow... and not be blocked and potentially degraded by the current need for transforms, mappings, etc.

Stop the #healthIT 'religious' wars

I seemed to trigger an interesting discussion over on Grahame Grieve's blog when I posted the following question to him on Twitter. https://twitter.com/omowizard/status/432869451739185152

Grahame responded a la blog, but not really answering the essence of my question.

However, below is a great comment copied directly from the discussion thread, and submitted by Koray Atalag (from openEHR NZ). In it he has succeeded in expanding my twitter-concise thoughts rather eloquently:

"Hi guys,

I’m interested in getting these two awesome formalisms as close as possible. In what way – have no clue at the moment apart from existing mutual understanding and sympathy at a personal level. Well that’s where things start I guess ;) Ed Hammond once said, as he was visiting us in Auckland last year, convergence in standards is a must, mappings just become complex and hard to maintain. I kind of agree with that. Where I’d like to see openEHR and FHIR is really dead simple – Share what they are the best. Here is how I see things (and apologise if you find too simplistic): 1) Archetypes are THE way to model clinical information – anyone argue with that? 2) FHIR IS the way to exchange health information over the wire; modern, non-document/message oriented, heaps of interest from vendors etc. 3) openEHR’s Model Driven Development methodology can be used to create very flexible and highly maintainable health information systems. So this is a different territory that FHIR covers. Inside systems vs. Outside. A growing number of vendors have adopted this innovative approach but it’d be dumb to expect to have any significant dominance over the next decade or so.

So why not use openEHR’s modelling methodology and existing investment which includes thousands of expert clinicians’ time AND feed into FHIR Resource development – I’d assume Archetypes will still retain lots of granularity and the challenge would be to decide which fall under the 80%. I take it that this proportion thing is not mathematical but a commonsense thingy.

As with anything in life there is not one perfect way of doing health IT; but I feel that FHIR based health information exchange with propriety (and from the looks increasingly monolithic) large back-end HIS and openEHR based health information systems working with rich and changeable clinical data (note some Big Data flavour here ;)will prevail in this rapidly changing environment.

So I’m interested – probably mapping as a starting step but without losing time we need to start working together.

The non-brainer benefits will be: 1) FHIR can leverage good content – I tend to think a number of Published or Under Review type archetypes have been in use in real life for a while and that’s probably what Heather was referring to by clinical validation. A formal clinical validation is a huge undertaking and absolutely unnecessary I guess unless you’re programming the Mars Colonisation Flight health information systems!

2) openEHR can learn from FHIR experience and use it as the means to exchange information (I haven’t yet seen EHR Extracts flying over using modern web technologies). There is an EHR service model and API but I’d say it is not as mature as rest of the specs.

3) Vendors (and the World for that matter) can benefit from 1) mappings; and then 2) better FHIR Resources in terms of more effectively managing the semantic ‘impedance mismatch’ problem. An example is medication – I’d assume an HIS data model for representing medication should have at least the same granularity as the FHIR Resource it ought to fill in (practically only the mandatory items). If any less you’re in trouble – but having a sound model will ease the HIS internal data model matching and help with deciding which part is 80% vs. 20%.

4) Needless to say vendors/national programmes using pure openEHR vs. FHIR + something else will benefit hugely. Even ones using CDA – remember some countries are using (or just starting as in New Zealand) Archetypes as a reference library and then creating payload definitions (e.g. CDA) from these. So having this openEHR – FHIR connection will help transition those CDA based implementations to FHIR. Interesting outcome ;)

5) I think in the long run vendors can see the bigger picture around dealing with health information inside their systems and perhaps start refactoring or rebuilding parts of it; e.g. clinical data repositories. An HIS with sound data model will likely to produce better FHIR instances and definitely have more capability for using that information for things like advanced decision support etc.

All for now…"

And then the conversation continues, including Thomas Beale from @oceaninfo and Borut Fabjan from @marandlab. I know of many others who have expressed a strong desire for openEHR clinical content and FHIR to be more aligned and collaborative.

FHIR seems here to stay - it is gathering fantastic momentum. The openEHR methodology for developing clinical content is also gathering momentum, including national program adoption in a number of countries and in clinical registries.

Chuck Jaffe (CEO of HL7) emphasised the need for collaboration between standards at last week's Joint Inter-Ministerial Policy Dialogue on eHealth Standardization and Second WHO Forum on eHealth Standardization and Interoperability at the World Health Organisation in Geneva.

So let's do it.

We all live in the real world and need to be more proactive in working together.

It is time to stop the 'religious wars', especially the long-time, tedious 'not invented here' argument between openEHR and HL7 and the ever-ongoing lets 'reinvent the wheel' approach to EHR content that occurs more broadly.

I call on all participants in the eHealth standards world to get the 'best of breed' standards working together.

Engaging clinicians: building EHR specifications

There is a methodology that is pragmatically evolving from my experience in openEHR clinical modelling work over the past few years. It has developed in a rather ad hoc way, and totally in response to working directly with clinicians. The simplicity and apparent effectiveness – both for me and the clinicians involved - continues to surprise me each time I use it. The clinical content specifications for specialised health records and care plans that we are building are being developed with a sequence of expert input and clinical verification:

  1. Identifying the clinical requirements and business rules in conjunction with a selected initial domain expert group;
  2. Broader abstract verification of the notion of ‘maximal data set’ for ‘universal use case’ during formal archetype review cycles;
  3. Contextual validation during template review by ‘on-the-ground’ clinicians; and finally, although to a lesser degree,
  4. Validation during mapping and migration of legacy data.

With each project I am refining this process. Starting off a project with face-to-face meetings has been a ‘no brainer’ – after all, it takes a while for everyone to understand the get the idea of what we are doing. However after initial workshops, pretty much everything else can be done via web conference, online collaboration via CKM and email.

I find the initial workshops are usually greatly satisfying. Within hours we can be creating two outputs – a mind map that reflects the clinicians evolving conversation about their requirements and, in parallel, an equally agile template of clinical content specifications that can be verified by the clinicians in real time.

The mind map is displayed on a shared screen or via a data projector and acts as a living document, evolving as we talk through the clinical requirements, and identify the complexities, dependencies and relationships of all the components. The final mind map may be surprisingly different to how it started, and at the end of the conversation, the clinicians can verify that what they’ve said if accurately reflected in the mind map. It is an open source tool, so we can also share this around after the workshop for further comments.

Subsection of a mind map

Most recently I have begun building a template on the fly during the workshop, using any existing archetypes that are available, and identifying gaps or the need for new archetypes on the mind map as we go. In this way we are actually building the content specification in front of the clinicians as well. They get an understanding of how the abstract discussion will actually shape the resulting EHR content and they can verify it as we gradually pull it together. The domain experts are immediately equipped to answer the question: “Does this specification match what you have been telling me you do in practice?”

Same subsection of the mindmap as a template specification

This methodology seems to bring the clinicians along with us on the clinical modelling journey, and most are able to understand at least some of the implications of some of our requirements discussions and, in particular, the ‘shape’ of the data that we can collect. It is a process seems to suit the thinking process of many clinicians and the overwhelmingly consistent feedback from recent workshops is that they have all actually enjoyed the experience and want to know what are the next steps for them to be involved. So that’s certainly a winner.

And the funders/jurisdictions are anecdotally confirming for me that they are finding that this approach is supporting higher quality specifications in a much shorter time frame.

For example, at a project kickoff workshop for a new project recently, in two days we:

  • developed a series of mind maps capturing a consensus view of the clinical requirements and business processes;
  • identified all the archetypes required for the entire project, including those that existed and were ‘fit for use’, those that needed some extension to meet requirements and new archetypes that needed to be created;
  • identified sources of information or mind mapped the requirements for each new archetype identified; and
  • built 3 templates comprising all of the existing archetypes available from a number of sources – the NEHTA CKM http://dcm.nehta.org.au/ckm/, the openEHR international CKM http://www.openehr.org/ckm/ and local drafts that I had on my own computer. For a number of the new archetypes we also collectively identified source information that would inform or be the basis for the archetype development.

All of this described above took 8 medical practitioners clinicians away from their everyday practice for only 1-2 days, each according to their availability. Yet it provided the foundation for development of a new clinical application.

Then I go home. Next steps are to refine the mind map, modify/update/specialise any archetypes for which we have identified new requirements and build the new ones. And in parallel start the collaborative process through a CKM project to ensure that existing and modified archetypes are ‘fit for (our project’s) purpose’, and to upload and initiate reviews on the new draft archetypes.

All work to progress these archetypes to maturity (ie aiming for clinical consensus) and then validate the templates as ready for handover to the implementers can be done online, asynchronously and at a time convenient to the clinicians work/life balance!

Clinician-friendly view of the same template in CKM

I live over 2000 kilometres away from these clinicians. Yet the combination of web conference and CKM enables us to operate as an ongoing collaborative team. It seems to be working well at the moment... No doubt I'll continue to learn how to do it better.

The White Wizard is Walking

I received my Walking Jacket at the reception desk of my Italian hotel. I'd just paid an exorbitant amount of tax in exchange for receive my jacket from the Italian Postal Service for my trusty, favourite jacket to be turned into a disruptive artwork by @ReginaHolliday. I first wore it to the Medical Informatics Europe Conference in Pisa in August 2012 and then to the ISO TC 215 meeting in Vienna the following September. I'd heard about Regina and her family's story some time before, my awareness raised purely through the twitter community, and then finding images of her 73 cents mural. I finally met her at HIC12, the Australian health informatics conference in Sydney in early August.

Regina was a keynote speaker and during her HIC address, many in the audience were clearly moved. It is the only presentation that I have seen in the health IT environment that received a standing ovation – powerful stuff. It polarised people. Most loved it and felt inspired; some thought it inappropriate in a healthIT conference – go figure!

Regina and I talked one night at dinner. She offered to paint me a jacket. I felt a bit like a fraud – I have no special patient data faux pas story to tell. My involvement in health IT stems from having a long-term engagement with the health system from the tender age of 5; about how that influencing my decision to become a doctor; and my subsequent, almost accidental, slip sideways into health informatics. Nowadays my work focus is firmly on getting health data right, working collaboratively with international clinicians to agree on common definitions about how to represent clinical content in electronic health records.

fulljacketAnd yet here is my jacket – a favourite that I bought way back in 2000 for my first foray out of clinical practice and into the corporate world - my first step into health informatics. I hadn't worn it for a while and Regina's painting has given it a new lease of life. It now has its own story - having travelled to the US to be painted, on to Europe to be worn for the first time in Italy and Vienna, and now back home to Australia.

Regina hasn't explained the image to me. I've asked … and waited. She promised to blog about it, but I think I'll be waiting a while. In her gallery of jackets that tell personal stories, mine is number 176.

So let me share what I think it portrays…

I was hit by a car when I was five years old. As a result I started my first day of school on crutches and in plaster from my waist to my right ankle – that young girl on crutches and wearing a caliper is me. Mini-me!

That accident resulted in some permanent problems and I ended up experiencing a series of operations during my childhood and early teenage years. Way too much time was spent in hospital than was healthy, but I still remember telling my orthopaedic surgeon that I wanted to be a Nurse. I remember him saying 'Rubbish. You shouldn't do that much walking. You should be a Doctor, instead"! Maybe it planted a seed. I don't remember it influencing my decision to enter medicine, but that is where I found myself. I'm not sure that as a young intern and resident years we walked less than the nurses – my memory is we never stopped running!

I practiced medicine for over 15 years, gradually side-stepping into health informatics as I joined my husband in developing, marketing, selling, supporting one of the first prescribing systems in Australia. He was the geek GP, passionate to combine his love of clinical practice with technology. I merely agreed to support him in his venture, having absolutely no idea what I was getting myself into.

That kickstarted the health informatics chapter of my life – 17 years duration to date - which has propelled my husband and myself jointly into the world of business, from cottage industry to large corporate consulting firms, and travel to some extraordinary places.

topjacketThe adult woman in Regina's image is also me – as the 'omowizard'. This has become my online persona, largely now related to Twitter and blogging. 'omowizard' originated from a love of Tolkien and seeking a Hotmail account back in 2000. Gandalf was taken, as was the 'white wizard'. So given my laundry responsibilities for my young family at the time, I became whiter than white – the Omo wizard. For those unaware, Omo is a brand of clothes washing powder that at the time claimed to wash clothes 'whiter than white'! I never dreamed anyone else would ever have to know or understand that, not even when I experimented on Twitter for the first time as @omowizard. Now it is probably too late to change :)

In the painting I am standing in isolation on a very tall, narrow, bleak pillar. I'm not quite sure what that is representing. Some have suggested a reference to Sauron's tower in Lord of the Rings, but maybe that's too fanciful! I certainly don't have any magic powers. My youngest child informed me recently that I have a strong maternal death stare as a superpower, but I don't think that counts. Maybe it represents the approach that we have been using to standardise the clinical content for health records. It is known as openEHR and although I have been heavily involved in developing the clinical modelling side of it – building archetypes and training others. It has stood in isolation for many years and outside of the mainstream approaches to health IT, but in recent years has become recognised and is gaining increasing recognition as a significant contributor towards the goal of semantic interoperability. Only Regina knows the answer to this one!

bottomjacketThe ribbons or strands entwining around the tower are really interesting to me. The main one rippling across the tower reads: "A house divided against itself cannot stand". This appears to be a direct reference to Jesus' words in Matthew 12:25 – "He knew what they were thinking and told them, "Every kingdom divided against itself is destroyed, and every city or household divided against itself will not stand." (NIV 2012). Abraham Lincoln used the phrase in a speech to Republican candidates at the Republican State Convention on June 16, 1858 relating to the danger of slavery-based disunion. Apparently it is still used sometimes in political speeches, calling for unity and working together for a common goal.

The lowest ribbon says simply, 'openEHR'; the one immediately to its right, 'HL7'; and just above it, 'Standards and Interoperability'.

I had described the approach that we are taking with our openEHR clinical modelling to Regina as one in which we are engaging with clinicians and domain experts to verify that the computable definitions that we are building in openEHR systems are fit for purpose. It is a collaborative approach that is crowdsourcing clinical expertise using the Clinical Knowledge Manager tool. For many years there had been little engagement with the HL7 community as a whole, although recently there appear to have been a softening of the lines of political demarcation. Those not constrained by political blinkers can see there could be significant mutual benefit from openEHR content definitions being used within HL7 constructs. Who knows if this will eventuate? And then there are other opportunities such as the CIMI and FHIR projects… Collaborating is the key.

So I interpret the ribbons yielded by the omowizard as another way of Regina calling for collaboration and collective action in healthIT. It seems that she is portraying me as a coordinator of some of the standardisation occurring in healthIT around the archetype work – using the @omowizard's twitter and blogging being one of the means to coordinate and share the passion, perhaps!

I love the painting but in trying to interpret it, it is not a comfortable image for me. I don't like being the focus. I am certainly enjoying my small bit part in the openEHR clinical modelling and health IT standards world. I have come to openEHR when it was relatively immature. We are seeing it grow and become established, but it is definitely not my idea or vision. I'm just one of number who have had the exciting opportunity of being a facilitator for something that I believe will make a difference.

I hope that when I wear this jacket it will trigger some discussions that might further progress in sharing health information and impacting the provision of health care – that is reason enough to wear it.

Thankyou, Regina. My jacket is a piece of art that is beautiful to look at; It is a powerful statement when understood in context of its origins; and is potentially a disruptive force when considered as part of the larger international Walking Gallery movement. I look forward to more opportunities to wear it at home in Australia and in my travels.