How to fix CKM biggest issue

Ian McNicoll ian at freshehr.com
Fri Mar 13 08:55:40 EDT 2015


Hi Diego,

Mostly agree but I think there is a still a strong case for a purely
international 'centrally-resourced' activity which is aligned to vendor /
system builder need, rather than national activities which for now tend to
have a more limited scope and focus.

I don't think we can rely on national activities to drive this, though
agree that we need to make it easier for them to share into the
international space.

I wholly agree that it would be good to start looking at some APIs that
would allow easier cross-communicaton between different repository
solutions. Some of the work done on versioning/namespacing was definitely
done with that in mind.

I'm sure the Board would welcome any concrete proposals in that are, if you
had something worked up already. I am conscious that the HL7 template
community is also working in this area. It would be nice to se some kind of
simple Restful API emerge.

Ian

Dr Ian McNicoll
mobile +44 (0)775 209 7859
office +44 (0)1536 414994
skype: ianmcnicoll
email: ian at freshehr.com
twitter: @ianmcnicoll

Director, freshEHR Clinical Informatics
Director, openEHR Foundation
Director, HANDIHealth CIC
Hon. Senior Research Associate, CHIME, UCL

On 13 March 2015 at 11:44, Diego Boscá <yampeku at gmail.com> wrote:

> I really think that the solution to all these detected issues is a
> distributed approach: Each national/specific domain archetype repository is
> likely to have paid staff to develop their archetype set. Each national
> repository should have their own editors, which should ease the editorial
> tasks on international CKM.
>
> I'm aware that CKM currently supports or is planing to support completely
> this approach, but we probably should develop/agree on an open API which
> repositories could (should) then use.
>
> 2015-03-13 6:10 GMT+01:00 Heather Leslie <
> heather.leslie at oceaninformatics.com>:
>
>>  Thanks Evelyn,
>>
>>
>>
>> Even I forget the real roots… We should document it so we don’t lose the
>> provenance.
>>
>>
>>
>> Regards
>>
>>
>>
>> Heather
>>
>>
>>
>> *From:* openEHR-clinical [mailto:
>> openehr-clinical-bounces at lists.openehr.org] *On Behalf Of *Evelyn Hovenga
>> *Sent:* Friday, 13 March 2015 2:53 PM
>>
>> *To:* 'For openEHR clinical discussions'
>> *Subject:* RE: How to fix CKM biggest issue
>>
>>
>>
>> Thanks you for this historical overview Heather.  I’d like to add that
>> the original CKM was developed, maintained and funded by Central Queensland
>> University.  It was taken over by Ocean Informatics when that University
>> decided to shut down its entire HI Research Centre at the end of 2007.
>>
>>
>>
>> Evelyn
>>
>> [image: EHE logo tree]
>>
>>
>>
>> Dr Evelyn J.S.Hovenga, FACS
>>
>> CEO & Director
>>
>> *   eHealth Education Pty Ltd, RTO 32279*
>>
>>   www.ehe.edu.au
>>    e.hovenga at ehe.edu.au
>>  Mob. 0408309839
>>
>>
>>
>> *From:* openEHR-clinical [
>> mailto:openehr-clinical-bounces at lists.openehr.org
>> <openehr-clinical-bounces at lists.openehr.org>] *On Behalf Of *Heather
>> Leslie
>> *Sent:* Friday, 13 March 2015 1:12 PM
>> *To:* For openEHR clinical discussions
>> *Subject:* RE: How to fix CKM biggest issue
>>
>>
>>
>> Hi Gustavo and the openEHR community,
>>
>>
>>
>> I’m really sad and disappointed if Gustavo’s opinion is mirrored
>> elsewhere in the openEHR community.
>>
>>
>>
>> I’m sure it reflects a frustration with the slow process over past years.
>> But anyone who has bothered to ask me about how I feel about the progress
>> will hear that I am much more frustrated than any of you.
>>
>>
>>
>> We, as the openEHR community really need to do a bit of soul searching.
>> From my point of view we’ve all been very passive about this modelling
>> work, all waiting for someone else to do it or take responsibility for it.
>>
>>
>>
>> The reality is that when Ocean first launched the openEHR CKM, the work
>> fell to Ocean people. Either Ocean funded it OR Ian and I did the editorial
>> work in our own time… no other option, and has been the way for years.
>> Truth is, after a couple of years and getting a couple of hundred
>> archetypes publicly available on CKM, I was really burned out and unwell.
>> No-one seemed to notice the effort, to be honest. Certainly no-one seemed
>> to appreciate it.  I stopped doing the work in my own time and reclaimed my
>> evenings and weekends. I hoped that there would be a cry of outrage from
>> the community – “Why has the CKM work stopped?” But no one noticed; no one
>> said anything, for at least 18 months, possibly more.
>>
>>
>>
>> This passivity has astounded me.
>>
>>
>>
>> Over 2 years ago, there was a bit of an epiphany – a special strategic
>> board meeting was held in London where others were invited, including
>> myself. The attendees all agreed that one of the highest priorities was to
>> get archetypes published. I was able to present calculations on how much it
>> would cost to fund some editorial work to get this happening. Nothing
>> happened.
>>
>>
>>
>> Finally, in the second half of last year, the Industry Group has been
>> able to offer the first funded work to Ian and myself to try to fast track
>> some archetypes through to publication. This is the first funding that has
>> been raised in the openEHR community for this critical modelling work ever.
>> The scope is clearly limited to publishing 69 archetypes. Unfortunately
>> there was no extra allocated for the extra time required to train or mentor
>> others to do the work.
>>
>>
>>
>> The Industry Sprint hasn’t been as fast or as focussed as either Ian or I
>> would like as we both have ‘day jobs’ that require our attention as well.
>> However you will have seen a flurry of activity in the past couple of weeks
>> – 9 archetypes have been refined and sent out for review in the past 10
>> days. I really appreciate that the Industry Group has collaborated and
>> committed to this support. And of course it is really exciting that this is
>> one of the first times we will see potential competitive vendors working
>> together to get clinical content standardised – breaking down the siloes!
>>
>>
>>
>> So the situation IS changing…
>>
>>
>>
>> And in addition, we need to recognise what we do have – an amazing set of
>> building blocks and an approach to clinician engagement that has not been
>> emulated in any other domain or standards work. This current openEHR
>> approach is world-leading and with fairly modest resources we can do a lot
>> more that needs to be done.
>>
>>
>>
>> The community has a fantastic problem. As of today we have 1300 users
>> from 85 countries registered on the openEHR CKM. What a spectacular
>> resource we have at our finger tips; 381 people have specifically
>> volunteered to review and 199 to translate archetypes – all through word of
>> mouth, no advertising. We have a purpose-built tool has been developed and
>> provided free of charge to the community for over 7 years in order to
>> manage the library, collaboration and governance of information models use
>> that. We have only two trained Editors and a handful of others with limited
>> experience and zero resources committed to managing it. So far it has been
>> run on the ‘smell of an oily rag’ – not sure how that will translate
>> outside of Australia – and this needs to change to become sustainable.
>>
>>
>>
>> From a tooling point of view, CKM has been purpose-designed and gradually
>> enhanced to do all the things that Gustavo dreams of – projects and
>> incubators (acting as sandpits for raw archetype development); multiple
>> roles for reviewers, editors, CKAs have all been there for at least a year;
>> archetypes can be proposed in the next release of CKM. Community
>> participation is the focus, and the capability is not currently being
>> leveraged as it could, and the healthy tension between ‘bottom-up’ and ‘top
>> down’ can be managed. But the real problem is that there are not enough
>> people trained as Editors, and no one resourced to manage/govern the work.
>>
>>
>>
>> Bringing on new Editors is absolutely welcome – both Ian and I are very
>> keen to share the Editorial and Clinical Knowledge Administrator load more
>> broadly, because otherwise the CKM work is not sustainable. All this talk
>> of the community being unable to participate is not actually fair or
>> reasonable – when I’ve put out a call for Editors we’ve had a few people
>> volunteer, true. To be honest though, most of those that I have discussed
>> it with in more detail have then declined when I’ve explained the amount of
>> commitment or they’ve simply participated in an editorial meeting. For
>> those remaining, they need training and then ongoing mentoring. But who is
>> to do this? How is this to be resourced? It absolutely does need to be
>> resourced appropriately.
>>
>>
>>
>> By contrast, I have been working under contract with the Norwegian CKM
>> team recently – they have been resourced to develop archetypes and develop
>> processes for governance and in many aspects after only one year of
>> activity they are now more advanced than the openEHR community. We are
>> working closely with the Norwegian CKM team to ensure that we can develop
>> processes for collaboration between CKMs. Silje Bakke from the Norwegian
>> CKM agreed last week to co-edit the Problem/Diagnosis archetype with me and
>> that archetype was sent out for review last night. other archetypes have
>> had guest editors involved as well, under Ian and my mentorship.
>>
>>
>>
>> Key learning: in order for the openEHR work to accelerate, there needs to
>> be modest financial resources committed to the archetype standardisation
>> work, beyond the very limited scope of the sprint, and the resources need
>> to be dedicated, not fitting it in between other work committments.
>>
>>
>>
>> As an aside, personally,  I’m sick and tired of personally being
>> considered a ‘blocker’. If only you can imagine how keen I am to upskill
>> others and share this onerous responsibility with others; of course at the
>> same time this will ensure that this approach will be sustainable into the
>> future, and all my work, passion and vision will have been worth it. If I
>> keep ‘control’, as some choose to view it, then I can be sure that all this
>> effort will have been in vain.
>>
>>
>>
>> And I’m thoroughly sick of Ocean involvement being regarded as ‘the
>> enemy’. I’m not going to address accusations of ‘conflict of interest’ in
>> this forum – the assumption of huge commercial advantage never gets
>> balanced by the huge cost of volunteering leadership. Perhaps one day one
>> of us will write our memoirs… J
>>
>>
>>
>> Back to the main point again - the community should be rightly feeling
>> indignant about a lot of things, but rather than complaining or ‘thinking
>> about it’ we need to be actively doing something about it. We have a new
>> openEHR Management Board – I hope they will do something about this? But,
>> also, if you are one of the indignant what are YOU personally going to do
>> about it?
>>
>>
>>
>> I’ve done what I can with essentially zero resources, now what do you
>> propose?…
>>
>>
>>
>> Regards
>>
>>
>>
>> Heather
>>
>>
>>
>>
>>
>> *From:* openEHR-clinical [
>> mailto:openehr-clinical-bounces at lists.openehr.org
>> <openehr-clinical-bounces at lists.openehr.org>] *On Behalf Of *Gustavo
>> Bacelar
>> *Sent:* Friday, 13 March 2015 3:51 AM
>> *To:* For openEHR clinical discussions
>> *Subject:* Re: How to fix CKM biggest issue
>>
>>
>>
>> Hi Ian, Sebastian and everyone,
>>
>> on early 2009 Microsoft discontinued its encyclopedia, Encarta. MS
>> Encarta had a limited selection of *professionally edited content*, but
>> it was defeated by an initiative of *non-professional edited content*: Wikipedia.
>> By that time, Wikipedia offered *2.7 million articles* in English,
>> Encarta had *42,000 entries*.
>>
>>
>>
>> Encarta did try to adapt, inviting users to submit suggestions for
>> changes to articles, but those suggestions *first had to be checked by a
>> member of the Encarta staff*. And Encarta *did not allow users to submit
>> new entries*.
>>
>>
>>
>> My point is: openEHR has a *huge potential*, but it is still
>> too bureaucratic. It must be free to follow its path.
>>
>>
>>
>> Someone can say: "but the quality of wikipedia is questionable, the
>> Editors are not professionals!". In 2005, Nature famously reported
>> <http://www.jimgiles.net/pdfs/InternetEncyclopaedias.pdf> that Wikipedia
>> articles on scientific topics contained just four errors per article on
>> average, compared to three errors per article in the online edition of
>> Encyclopaedia Britannica.
>>
>>
>>
>> ​I've been spreading the word about openEHR through courses (
>> http://goo.gl/KvNCvb) and consulting and I can see more and more people
>> aware of it, but the barriers are not moving. I've tested the beta version
>> of CKM, thanks Sebastian! It seems to be a very important upgrade,
>> including the CKA role.
>>
>>
>>
>> I understand that the focus of the Editorial group is to get green ticks,
>> but if there were more Editors would be more green ticks as well. By
>> mid-2012 there was a Call for CKM Editors. There were at least three people
>> interested: Domingo Liotta, ​Pablo Corradini and I. Nothing happened since
>> then.
>>
>>
>>
>> When it comes to using CKM to local projects, I really think it would be
>> much better for the community. It a local project would like to develop new
>> archetypes, it would be better to do it within an international context
>> instead of developing them locally.
>>
>>
>>
>> It is important to separate the interests of openEHR Foundation from
>> Ocean's, at his time there in conflict. Ocean wants to sell their products,
>> I don't blame it, but the international CKM needs to be a central hub for
>> archetype development. It doesn't matter if its for commercial projects or
>> not as long as the content:
>>
>>    - Is of interest and not repeated (e.g. a local version of an
>>    existing archetype)
>>    - Is not a specific admin data for particular use
>>    - Is available in CKM for community.
>>
>>  Many of the existing archetypes in CKM were created to fulfill
>> commercial use, so it should be used as a source of resources. I will use
>> the words on openEHR website and openEHR Wiki:
>>
>>
>>
>> "The openEHR CKM has gathered an active Web 2.0 community (...) for
>> *sharing* health information between individuals, clinicians and
>> *organisations*; between applications, and across *regional* and
>> *national* *borders*."
>>
>>
>>
>> ​A moral liberal approach would put more load on the Editors, but only if
>> we don't increase the Editorial team. It is better to have many useful
>> incubated archetypes ​than not having then in CKM. If these archetypes are
>> so important, we will be able to see and improve them as soon as possible.
>> Let's think about Encarta.
>>
>>
>>
>> Best regards!
>>
>> --
>>
>> Gustavo Bacelar
>>
>> MD + MBA + MSc Med Informatics
>>
>> Skype: gustavobacela
>>
>> ​r
>>
>> LinkedIn: pt.linkedin.com/in/gbacelar
>>
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>>
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>>
>
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