How to fix CKM biggest issue

Joseph Dal Molin dalmolin at e-cology.ca
Fri Mar 13 12:00:26 EDT 2015


Marcus... suggested reading as emotional fashion accessory to
flame-proof helmet:

"Dealing With Disrespect: Handling your critics, no matter what they
throw at you"
Jono Bacon

http://dealingwithdisrespect.com/jonobacon-dealingwithdisrespect-1ed.pdf

:-)

Joseph



On 15-03-13 11:22 AM, Marcus Baw wrote:
> At the risk of upsetting people, I am going to stick my neck out here
> in support of Gustavo.
>
> It has long puzzled me why a technology like openEHR - which is
> intended to foster sharing of Archetypes for the "universal use case"
> and trying to conquer the massive problem of international
> interoperability - has so many different CKMs, all doing their own
> thing albeit with some sharing.
>
> I think if the community knew that what it had built was going to be
> shared with the entire world by default (like Wikipedia) then there
> would be more motivation to participate. I have been involved with a
> couple of archetype reviews but if someone asked me where those
> archetypes are now I wouldn't be sure. UK CKM? Scotland CKM? HSCIC CKM?
>
> Apologies if this email gives away how little I know about openEHR or
> about how archetypes are shared in the real world*, but I would second
> Gustavo's call for a single, openly accessible, point of origin for
> canonical archetypes.
>
> * [I am one of a pretty small number of openEHR-trained individuals in
> the UK - so if I still don't get it yet, what's the hope for real
> direct-clinician-generated archetypes covering all of medicine.]
>
> I am attaching a heavy steel flame-proof helmet as I press Send. ;-)
>
> Here to Learn
>
> M
>
>
> On 13 March 2015 at 14:46, Gustavo Bacelar <gbacelar at gmail.com
> <mailto:gbacelar at gmail.com>> wrote:
>
>     Dear Heather and everyone,
>     I'm really sorry, but you completely misunderstood the point. I'm
>     not critisizing you or Ian, on the contrary. I've always
>     appreciated your work and I'm a big fan of you both (I'm proud to
>     say it in public). I was not discussing the persons, but the
>     policies. I don't think Ocean is an enemy, never mentioned it.
>
>     Differently of Wikipedia, where it doesn't matter to have other
>     similar wiki competitors, openEHR must have a single knowledge
>     repository to support semantic interoperability. The knowledge
>     repository of openEHR, be it CKM or not, must take advantage of
>     the community.
>
>     I agree with you that community is not as active as it should be,
>     but that's just because the current model doesn't help them to. I
>     know you and Ian are overloaded, and I don't blame you, but that's
>     exactly why we need to change the policy. If we want a more active
>     community, we must provide the means to achieve it.
>
>     You asked me what do I propose and what am I going to do about it.
>     I'm already doing something.
>
>     I want openEHR to be much bigger. I propose a more liberal
>     approach for CKM governance. I propose openEHR doesn't focus only
>     on National governments and big industry players, but also on
>     startups and small companies.
>
>     During the last couple of years, I can tell you I've promoted
>     openEHR in Brazil, in Portugal and even in USA. I've presented
>     lots of keynotes and courses free of charge, started an unfunded
>     project for public care, created a website in Portuguese
>     (www.openehrbrasil.com.br <http://www.openehrbrasil.com.br>),
>     written papers and white papers in Portuguese. More recently, I'm
>     writing a book (an introductory guide) to be distributed for free.
>     All about openEHR with zero resources (and the list is probably
>     missing many things, like ophthalmology archetypes).
>
>     Kind regards,
>     Gustavo Bacelar
>
>
>     2015-03-13 5:10 GMT+00:00 Heather Leslie
>     <heather.leslie at oceaninformatics.com
>     <mailto: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
>         <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
>
>         EHE logo tree
>
>         	
>
>          
>
>         Dr Evelyn J.S.Hovenga, FACS
>
>         CEO & Director
>
>         *   eHealth Education Pty Ltd, RTO 32279*
>
>           www.ehe.edu.au <http://www.ehe.edu.au/>
>            e.hovenga at ehe.edu.au <mailto:e.hovenga at ehe.edu.au>
>          Mob. 0408309839   
>
>          
>
>         *From:*openEHR-clinical
>         [mailto: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] *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
>         <http://pt.linkedin.com/in/gbacelar>
>
>
>         _______________________________________________
>         openEHR-clinical mailing list
>         openEHR-clinical at lists.openehr.org
>         <mailto:openEHR-clinical at lists.openehr.org>
>         http://lists.openehr.org/mailman/listinfo/openehr-clinical_lists.openehr.org
>
>
>
>
>     -- 
>     Gustavo Bacelar
>     MD + MBA + MSc Med Informatics
>     Skype: gustavobacela
>     ​r
>     LinkedIn: pt.linkedin.com/in/gbacelar
>     <http://pt.linkedin.com/in/gbacelar>
>
>     _______________________________________________
>     openEHR-clinical mailing list
>     openEHR-clinical at lists.openehr.org
>     <mailto:openEHR-clinical at lists.openehr.org>
>     http://lists.openehr.org/mailman/listinfo/openehr-clinical_lists.openehr.org
>
>
>
>
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