How to fix CKM biggest issue

pablo pazos pazospablo at hotmail.com
Sat Mar 14 00:53:19 EDT 2015


Hi all,
I agree with Gustavo's view and I'm also very thankful for all the work done by Heather and Ian, without it we "techies" couldn't create any software at all, being that commercial or in my case open source + software used for openEHR training.
For me the biggest concern, besides the limited publishing capabilities or non editors, is that the CKM is made over proprietary software, that doesn't allow us to create our own instances of the CKM for free, and share archetypes in a distributed / versioned way, like GitHub does.
For me, as an openEHR trainer that's a major blocker, I can't publish archetypes so my students can play with them, translate them, improve them, etc. And I played a lot of times with the idea of creating a simplified open source clone of the CKM, can't make this idea true because I don't have the resources/time to do it, but at the same time hoping that the current CKM evolves in that way, but there are still core parts of it that are proprietary.
I know we talked about this lots of times, and we don't move forward other direction because the lack of resources, and what we can do is just be in a "use what we have in the best possible way" mode.
I believe if we reach a truly distributed and open CKM the editors will be more and more each day. That is happening every day with thousands of projects on GitHub.
Just wanted to add also the technical side of some of the current problems. 

-- 
Kind regards,
Eng. Pablo Pazos Gutiérrez
http://cabolabs.com

From: gbacelar at gmail.com
Date: Fri, 13 Mar 2015 14:46:52 +0000
Subject: Re: How to fix CKM biggest issue
To: openehr-clinical at lists.openehr.org

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), 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>:








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







 
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]
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 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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-- 
Gustavo BacelarMD + MBA + MSc Med InformaticsSkype: gustavobacela​r
LinkedIn: pt.linkedin.com/in/gbacelar


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