A Call to Action – Getting our information right

Hi all, it’s been quite a while…So it’s going to be long. I’m going to make a complete dump of my mind which over the past few days was quite full; feeling really angry, first, then hopeless and then it ‘clicked’ and now I can think really clearly and know which direction I want to take. I hope, as a member of the public and academician, some of the ideas and rather informal tone won’t offend any person or organisation – if so it is completely unintentional. Read on…

OK the topic is a completely professional one: all about what is happening (well for the most part what is NOT happening – but please bear with me) in NZ health IT. I think we, as a country, are at an important cross-road now:

– We have a new health minister who’s forward thinking and willing to take reasonable risks – that is the NZ EHR, or officially known as “Single EHR”. I strongly support the idea and personally don’t see any other option as this is clearly what every developed nation is currently doing. So we ought to take the step – full stop.

– Unfortunately, Health IT, like healthcare delivery in NZ, has been way too fragmented. Over the past 8 years that I have been fortunate enough to call this beautiful country home, the investments have been overly cautious and mainly risk averse. The word “EHR” has been a tabu but new words have been invented to circumvent the acute need in some key areas: Shared Care Systems. I myself have been on the bandwagon for a while. It is basically a mini EHR plus a multidisciplinary workflow tool – how cool is that? It became apparent during implementation that, while the scope of EHR might be small, this is like overcoming the escape velocity to overcome Earth’s gravity and reach space: you’ve got to overcome all of the hurdles – technical and information-wise no matter how small or big the payload is. What happened? Bigtime FAIL (except for a few places, such as Canterbury, where truly stars have aligned).

– At the same time, while in many developed jurisdictions hospitals have been blessed with fully integrated EMR systems, we kept on patching our fragmented systems and establish individual integration between disparate systems. It is hilarious that DHBs have just recently gotten rid of IE6! Way too many DHBS, way too many systems and way too many ways of healthcare practice and administration. Makes one think, whether this might actually been a deliberate way to create more jobs! Naah 😉

– The primary care health IT, together with NHI, has been the main factor for NZ to score at the top among many developed nations (see slides 4-8), something magical had happened: almost all GPs have been meaningfully and actively using an EMR: Practice Management Systems (PMS). So much so that when the system was down I observed GPs were really upset as they couldn’t get a patient’s history during the short encounter. I really think the single vendor who held like 95% of market, MedTech, has done a monumental job and single-handedly carried NZ to the top of the league. Yes All Blacks of health IT, in primary care. But once you’re at the top there’s only one way you can go – rest of the world has caught up and now passed us. Sad but true. Sorry I have no hard evidence but you may ask your GP next time you visit what they’re thinking about their PMS 😉

– We do have a counterpart star in secondary care – Orion Health. I, like many NZers, feel very proud about their great successes internationally. Like Lorde…But because there has not been a drive in NZ for fully integrated hospital information systems they didn’t build such a product for a long time. Naturally their core competence has been around health information exchange. Their integration engine, Rhapsody, is truly an amazing product – as many say. I don’t have any practical experience with it as yet but it now natively supports the all new HL7 FHIR standard. And the smart Concerto – a web based clinician portal in secondary care powered by Rhapsody. That was the sensible area to focus – since the reality was that there were heaps of disparate systems in a hospital they had to excel in bringing useful information to the clinicians to support direct care. Absolutely crucial. They have also recently acquired a fully integrated hospital EMR from Microsoft – but we don’t hear much about it.

So why am I telling all this – this blog has so far been followed by only a few, already knowledgeable about health IT in NZ, either technically enthused clinicians or clinically enthused developers and a few of us who are formally in between. I’m intending to disseminate this post (I’ll probably shorten and make a more formal version later) very widely, even internationally. Please bear with me…Here’s the deal:

I was at HISO meeting yesterday – yes I’m an expert advisory member of our National Health Information Standards Organisation. I’m not aiming at showing off – but I’m also a member of the Sector Architects Group and have co-authored the National Interoperability Reference Architecture which in 3 parts published as a HISO standard. I am also a Board Member of HL7 NZ (recently resigned from vice-chair as I have a full-time job at the University!). I’m in the steering committee (I think!) of the Integrated Data Initiative of Stats NZ – for secondary use. I’m also member of the Management Board of openEHR – that’s international and I’m really loving it. Well that explains why my CV is weak on academic publications – I have been so eager to work in the ‘Real World’ 😉 So one might think I must have been awfully busy and making a lot of contribution these days. Not the case in NZ and that was my wake up call today! I had a brilliant day with family – helped me to reflect on my experiences over the past years and I reckoned what was bothering me. I am absolutely not contributing enough and kind of started to feel worthless instead of all that glitter 😉 And even start to criticise things…what a loser – right?

The reality is, I honestly think, the government is doing as best as they could. With so little resources and capacity for health IT. So instead of criticising and feeling miserable about things I chose to contribute – more effectively and directly. So I’ll try to portray how I was feeling until this afternoon (OK I admit, it was a glorious day in Auckland and I got out early from work and went to the beach with family 🙂

The pessimist view: I heard from the govt officially that openEHR will not be used in NZ EHR. Wow how dare! This is the only fit-for-purpose EHR standard in the world and I’m bloody on top of this… Our very Interoperability Reference Architecture actually is underpinned by openEHR. So what happened? And yes now we have FHIR – the panacea in health interoperability. Oh and SNOMED CT – humanity’s most expensive terminology. But IHTSDO knows the business, it works with governments. Since there’s no competitor there is no risk. So governments happily subscribe – some even pay tens of millions! Don’t get me wrong, I strongly support standardisation in clinical terminology and have actually developed one of the first clinical systems with an automated SNOMED encoder (back in 1998 – PATHOS-WEB, my anatomic pathology system. Yes I was once a developer – for 15 odd years! It held >2 million records, about 30% SNOMED encoded back in Turkey). So I know a little bit about SNOMED 😉 No I don’t like the way IHTSDO operates (even many of IHTSDO members will be surprised to hear SNOMED had been translated into Turkish back in mid-90’s and due to their agressive commercial direction back then the Turkish editor who I worked very closely with sent all print material to recycle and destroyed electronic copies!) and current archaic structure and limitations of SNOMED but hey they are overwhelmingly successful – so they must be right! And I accept it – SNOMED is our best shot. GALEN is dead. Medcin never took off. VHS won over Betamax! once again!!! So will it be the case for FHIR and openEHR?

My current view: I know whether we get a Big vendor’s EHR or a local solution (code name: NZ Inc.) we need to define our national clinical information requirements. So this is a homework we ought to do whatever the solution might be. Now a bit Health Informatics 101 stuff but we health informaticians know by heart (at least my students!) there are several different layers for interoperability and thus building a decent EHR:

Interop3Levels

So what do we currently have in NZ?
1- Data layer: ticked, that’s bread and butter these days. Not a problem
2- Terminology layer: ticked? well effectively yes, we do have ICD10AM, LOINC (NZPOCS) and now SNOMED CT. That should be enough for a while. Need a terminology server and Patients First is working on it. Thanks to Peter Jordan.
3- Content Standards: Houston we have a problem! So I argue strongly there is currently no coherent group in NZ addressing this at a national level using best scientific and other evidence available. The standards group within the Ministry with limited resources have been putting together some information standards recently but I believe this should be done with more engagement from the Sector – especially from clinicians and consumers. Keep in mind this is the information level – or more formally: Information Modelling. That’s the business level – healthcare. So currently proposed Content standards for NZ EHR are all technical – where is the clinicians’ and consumers’ voice? That is what openEHR delivers – non-technical people can directly contribute to content development (e.g. how to record a clinical diagnosis, lab result, prescription or even as simple as body weight) using mature high-level tools. Ah but we have FHIR – right? read on…
So the question is: where is the source of truth for clinical information definition for Single EHR?

I must admit there is overlap, possibly significant, between the definition of clinical information (aka Content) within EHR and the content at API. Truth is, FHIR is still in its infancy, don’t get me wrong, it is a working brilliant standard which I’ve been a strongly supporting… There are many real-world examples. But these are all health information exchange type of projects – mostly used to provide fast, innovative and predominantly mobile App extensions to Big Vendors’ big EMR.

Although its uptake has not been rapid, openEHR in turn, has been in this space for almost two decades. Moreover, openEHR is the only standard, by way of a fit-for-purpose EHR Reference Model, that provides an architecture for EHR – that is a lifelong, longitudinal clinical record organisation that is capable of satisfying medico-legal, ethical and provenance requirements (that have explicitly been defined in ISO 18308 – Requirements for an electronic health record architecture).  We now have whole national programs (Norway, Brazil), regional projects (Australia, many EU countries, Russia, Middle-East and Asia) and specific products and projects. See this whitepaper for more details. We have around 1500 active users: expert clinicians, terminologists – lots of hard-hat health informaticians contributing, globally to defining these information models – called Archetypes (see CKM and select Report>Statistics). Suprisingly so few from the US. I hope it will change (Well maybe not with Trump  😉

The point I’m making is: it is not a matter of FHIR or openEHR, I say why not FHIR and openEHR? That seems to have been identified as the low risk option by many governments, regions and large projects (again refer to the whitepaper). Even HL7 itself is doing it (The Clinical Information Modelling Initiative uses Archetypes as source of truth to derive FHIR profiles). What’s so special about NZ? I believe there is a need for education and support – and I intend to do just that – with your help!

Reality is openEHR currently has many validated and mature information models which we can leverage to define our own EHR information requirements. It would be a breeze to create FHIR profiles and extensions and SNOMED RefSets once we know what information to collect and how. Trouble is FHIR currently does not have enough models and more importantly the tooling which clinicians can comprehend and create content. Yes my valued colleague and friend David Hay has been meticulously working on ClinFHIR tool – but I’m sorry it simply is not there yet for confronting clinicians. It took openEHR almost a decade and a handful of full-time developers (kudos to Ocean Informatics) to create CKM (openEHR’s web based collaborative clinical model governance tool). But many national and regional programs have been using it successfully to quickly, cost effectively and relatively easily define clinical information requirements. I told the analogy of building a real building to David yesterday at the airport over a couple beers: building an EHR is kind of similar to building a house: you start with a foundation, national MPI (NHI in NZ), health provider list, medicines list, formulary etc. we already have most of it in place – thanks to the NHITB. Then you assemble the walls, floors, kitchen, bathroom etc. and lastly you put the windows and doors and chimney – right? So, in my opinion, we have the foundation (e.g. NHI, NZULM etc.) and bricks (terminology – ICD, SNOMED, LOINC) but we need to have the interior design to build walls, internal doors, kitchen, appliances etc. This is similar to the definition of detailed clinical models for building a decent EHR. Once we get them right, only then, can we start putting windows and doors (APIs). I believe – strongly.

OK I’ll cut to the chase: Inspired from recent purchase of a private beach on behalf of the public via crowd-funding in NZ  I suggest we, health informaticians and enthusiastic clinicians and consumers, pretty much everyone who can contribute, to support the government in the quest for EHR. And I hope we can manage to provide this at no direct cost to the government. Timeline is pretty tight – they are aiming to get it running by 2018 so we got a lot to do. I hope at least some of you will join me.

So I’m thinking, this is beyond openEHR now, so probably a working group within HINZ might be a good platform – Health Information Working Group? I’d be interested in your feedback. Don’t forget, terminology and API are already in good and capable hands (govt and HL7 NZ). Everyone’s input will be valuable to help define key terminology sets and information models/datasets required for NZ EHR. I’m sure a participatory and consensus based input from a much wider and informed group will be very helpful for the standards group within Ministry of Health and HISO. Let’s do this! I’m sure if openEHR provides real value in this journey the government may consider their decision again.

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2 Responses to A Call to Action – Getting our information right

  1. sasanof says:

    Thanks Koray – i admire & support your action on this. I’m not so sure there is widespread support for MedTech or Orion necessarily. Depends who you talk to. One curly issue of course is privacy & security of data – i’m interested in how blockchain technology might contribute to improvement in that regard. Bottom line is we need ‘labourers’ on board & i don’t mean the clinicians who get it rather those who are in the majority and who must overcome differences of opinion for standards of care so we have true governance and acceptance of standards that are ‘good enough’ to proceed and create the platform for information exchange. This may not necessarily be an EHR as we know it now but could be something even better! I’m in. 😉

    • Koray Atalag says:

      Hi, many thanks for your feedback and support. I’m not really deep into security area myself and don’t know much about that particular technology but this is definitely a crucial area in the area of information exchange and governance. From what I can comprehend by reading Wikipedia entry it primarily applies to finance (e.g. bitcoin transactions) where non-repudiation and integrity seems to be guaranteed in a highly distributed and completely decentralised way. When you apply that to health information exchange transactions when damage is done (e.g. breach) there is little you can do to remedy, so I guess in healthcare we need to think more in terms of preventing harm.

      Re standards, as I have expressed, I believe they key to success and buy-in really lies in wider community involvement and I hope we can achieve that. I’ll keep posted on this blog and elsewhere.

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