ICD-11 queries

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In October 2009, I raised some general enquiries with Dr Robert Jakob, Classifications, Terminology and Standards Team, WHO, Geneva, in relation to the operation of the iCAT. No response from Dr Jakob was received.

October 28, 2009
Subject: iCAT collaborative authoring platform

1] iCAT (wiki type collaborative authoring platform)

The nine iCAMP YouTubes and the PowerPoint presentations and documents on the ICD-11 Revision Google site have provided a better understanding of the structure of iCAT and the way in which it will function. But it remains unclear how the launch of iCAT relates to the Timeline for the Alpha drafting process.

Can an indication be given at this stage of when iCAT might be anticipated to launch?

Once the iCAT platform has launched, will iCAT be in the public domain or will registration be required by members of the public in order to view iCAT or in order to access iCAT via an intranet?

It is understood that there will be various levels of authority and editing privileges within iCAT and also that at some point, some level of interaction will be extended to registered users beyond WHO, classification experts, RSG (Revision Steering Group), TAGMEs (Topic Advisory Group Managing Editors), TAG (Topic Group) members and TAG WG (Topic Advisory Group Work Group) members, content reviewers etc.

At what point in the Timeline for Alpha and Beta drafting is this envisaged?

To what categories of user will this be extended and what will be the extent of their interaction with the iCAT platform?

2] Visibility of the drafting process and population of content

How visible will the drafting and peer review process be to those beyond WHO, classification experts, RSG, TAGMEs, TAG members, TAG WG members, content reviewers?

For example, will it be possible for members of the public to track the progress of specific proposals and the population of content for specific categories as these pass through the various stages as set out in the ICD-11 Revision Google site document: Alpha Drafting Workflow, or will the public be able to view content only after it has reached a certain stage in the process and if so, at what stage?

3] Transparency around Peer Reviewers

Will those acting as independent peer reviewers to the various TAGs, and also external sources from whom input/opinion might otherwise be being sought, be identified via iCAT to users outside the ICD revision process?

Will the evaluations undertaken by external reviewers and input from external sources be visible to those outside ICD revision?

Will COI disclosures be required of external reviewers?

Sincerely etc.

On June 28, 2010, I raised the following queries with Dr Raad Shakir, Chair, Topic Advisory Group for Neurology. Although Dr Shakir did advise me that my queries had been forwarded to the Topic Advisory Group, no clarifications have been forthcoming. A copy of my queries was forwarded to WHO’s Dr Tarun Dua on October 14, 2010.

June 28, 2010
Subject: Query: TAG Neurology proposals for ICD-11 Chapter 6 (VI)

To: Dr Raad Shakir, West London Neurosciences Centre, Charing Cross Hospital, Fulham Palace Road, London W6 8RF

Re: Query in relation to Topic Advisory Group for Neurology proposals for ICD-11 Chapter 6 (VI)

28 June 2010

Dear Dr Shakir,

I am writing to you in your capacity as Chair, ICD Revision TAG Neurology, with a request for clarification of current proposals for the restructuring of categories classified in ICD-10 under G93 Others disorders of brain, specifically those at G93.3. That is:

Diseases of the nervous system (G00-G99)

> Other disorders of the nervous system (G90-99)

> G93 Other disorders of brain

[…]

          G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis

(with Chronic fatigue syndrome indexed to G93.3 in ICD-10: Volume 3: The Alphabetical Index)

In the absence of the release of an ICD-11 Alpha Draft, I rely on information as it currently displays in the ICD Categories listed in the iCAT production server at: http://icat.stanford.edu/

My understanding is that what is being proposed at this point for ICD-11 is that ICD categories coded between G83.9 thru G99.8 in ICD-10 Chapter VI: Diseases of the nervous system, are being reorganised.

That in ICD-11, Chapter 6 (VI) codings beyond G83.9 are represented by new parent classes numbered GA thru to GN thus:

Chapter 6 (VI) Disorders of the nervous system

[…]
G80-G83 Cerebral palsy and other paralytic syndromes
GA Infections of the nervous system
GB Movement disorders and degenerative disorders
GC Dementias
[…]
GN Other disorders of the nervous system

That “GN Other disorders of the nervous system” is parent to five child classes that are assigned the “Sorting labels” Gj90-Gj94.

(It is understood that a “Sorting label” is a string that can be used to sort the children of a category and is not the ICD code.)

At Gj92, sits “Chronic fatigue syndrome”

That “Gj92 Chronic fatigue syndrome” displays no child classes of its own.

The Category Note associated with “Gj92 Chronic fatigue syndrome” records a Change in hierarchy for class: G93.3 Postviral fatigue syndrome because its parent category (G93 Other disorders of brain) is removed.

According to the iCAT ICD Categories “Details for Gj92 Chronic fatigue syndrome”

“Gj92 Chronic fatigue syndrome” displays as a ICD Title term.

“Gj92 Chronic fatigue syndrome” has a Definition field populated.

It has an External Definitions field populated which includes definitions imported from other classification systems, the text of which includes “Also known as myalgic encephalomyelitis”.

It has “Benign myalgic encephalomyelitis” specified under Inclusions.

It has no Synonyms, Exclusions or other descriptor fields populated yet.

That at this point and as far as the iCAT version displays, there is no explicit accounting for “Postviral fatigue syndrome”, as an entity, other than that “Postviral fatigue syndrome” is specified under Exclusions to Chapter 5 (V) F48.0 Neurasthenia and to Chapter 18 (XVIII) R53 Malaise and fatigue and is referenced in these chapters as

         postviral fatigue syndrome G93.3 -> Gj92 Chronic fatigue syndrome

It is further understood, from the iCAT Glossary at http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html that:

“Inclusion terms appear in the tabular list of the traditional print version and show users that entities are included in the relevant concept. All of the ICD-10 inclusion terms have been imported and accessible in the iCat. These are either synonyms of the category titles or subclasses which are not represented in the classification hierarchy. Since we have synonyms as a separate entity in our ICD-11 content model, the new synonyms suggested by the users should go into the synonyms section. In the future, iCat will provide a mechanism to identify whether an inclusion is a synonym or a subclass.”

I should be most grateful if you could clarify the following for me:

1] In ICD-10 Volume 3: The Alphabetical Index, “Chronic fatigue syndrome” is indexed to G93.3 but does not appear in the Tabular List.

In ICD-11, is it being proposed that “Chronic fatigue syndrome” will be included in the Tabular List in Chapter 6 (VI) Diseases of the nervous system under “(GN) Other disorders of the nervous system”?

2] In ICD-11, is it being proposed that rather than “Postviral fatigue syndrome” being the ICD Category Title term (previously coded at G93.3, but which has now lost its parent class, G93) that “Gj92 Chronic fatigue syndrome” is proposed as a new ICD Category Title term?

If this is the case, what is the current proposed relationship between the terms “Postviral fatigue syndrome” and “Gj92 Chronic fatigue syndrome”?

That is, is it proposed that in the tabular list, “Postviral fatigue syndrome” would still appear as a discrete Category Title term or is it intended that it should be subsumed under “Gj92 Chronic fatigue syndrome” or become a Subclass of, or Synonym to “Chronic fatigue syndrome”, or to have some other relationship?

3] In the iCAT, the term “Benign myalgic encephalomyelitis” (previously coded at G93.3, but which has now lost its parent class G93) is listed as an Inclusion under “Details for Gj92 Chronic fatigue syndrome” but does not appear listed under “GN Other disorders of the nervous system” in the ICD Category List with a Sorting label of its own, nor as a child to “Gj92 Chronic fatigue syndrome”.

What is currently being proposed for ICD-11 for the classification and coding of “Benign myalgic encephalomyelitis”, as an entity, and its relationship to “Chronic fatigue syndrome” ?

Since this is not explicit from the information as it currently displays in the iCAT, nor from the Discussion Note to Gj92, I should be pleased if you could disambiguate current proposals for the classification of, and relationships between these three terms for ICD-11.

Sincerely etc.

On September 27, 2011, I wrote to Ms Sarah Cottler, WHO, Geneva, with the following enquiries. No response was received.

September 27, 2011
Subject: Enquiry re ICD-11 Chapter 6

Dear Ms Cottler,

In April this year, I was responsible for providing background briefing materials to Professor Leonard Jason, Ph.D., Director, Center for Community Research, DePaul University, Chicago for the May 10-11 meeting of the US federal CFSAC, the Chronic Fatigue Syndrome Advisory Committee that provides advice and recommendations to the US Secretary of Health and Human Services.

Professor Jason is a member of CFSAC Committee and discussion of the forthcoming ICD-10-CM was an item on the agenda for the committee’s May meeting for which I had provided Professor Jason with information around the forthcoming DSM-5 and ICD-11, which was used to inform discussions at this meeting.

One of the issues under discussion were proposals for three specific classifications within ICD-10-CM, which were compared with ICD-10 and with proposals for ICD-11. For the forthcoming October meeting of the CFSAC Committee, I should like to be able to provide Professor Jason with an update on current ICD-11 proposals for these three specific ICD-10 categories.

Although I have scrutinised the Alpha Browser for the relevant chapter, it isn’t explicit from the draft that displays to the public what current proposals are for the categories in question and I am approaching you and Dr Raad Shakir (Chair TAG Neurology) for clarification.

The categories in question are the ICD-10 Title category G93.3 Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome (the latter indexed in ICD-10 to G93.3 but not listed in the ICD-10 Tabular List).

In May, last year, the iCAT recorded a “change in hierarchy for class G93.3 Postviral fatigue syndrome because its parent category G93 Other disorders of brain is removed”, with Chronic fatigue syndrome assigned the “Sorting label” Gj92 and displaying as an ICD-10 Title category with a Definition and some other Content Model parameters fields and with Benign myalgic encephalomyelitis specified as an Inclusion term.

In May, this year, I noted that Chronic fatigue syndrome had been assigned the code 06L00 under parent 06L Other disorders of the nervous system.

The Alpha Browser currently displays a different category at 06L00 with the reappearance of parent class “Other disorders of brain”, at 06L02.

However, in the public draft as it currently displays, there is no explicit listing of Chronic fatigue syndrome or Postviral fatigue syndrome under 06L Other disorders of the nervous system, under 06L02 Other disorders of brain.

Chronic fatigue syndrome is currently displaying at

http://apps.who.int/classifications/icd11/browse/f/en#/@_@who_3_int_1_icd_2_G93_3_3

under

Selected cause is Remainder of diseases of the nervous system in Condensed and selected Infant and child mortality lists

with the Parent(s) listed as

Selected cause is Remainder of diseases of the nervous system in Condensed and selected Infant and child mortality lists
Selected Cause is All other diseases in the Selected General mortality list
Selected cause is Diseases of the nervous system
To be retired

In the absence of a more comprehensive Alpha Drafting platform and in order that CFSAC Committee members might be provided with contemporary information for their October meeting, I should be pleased if you or Dr Shakir could clarify the following:

What are current proposals for the classification of the three ICD-10 categories G93.3 Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome within ICD-11?

That is, which are proposed to be Title categories, which are proposed to be Inclusion terms and under which parent class are the three terms proposed to be coded?

Are all three proposed to be assigned Definitions and other Content Model parameters, or just Chronic fatigue syndrome?

If relationship fields between Inclusion terms and Title terms have been completed, what is the proposed relationship between the three terms?

Under the list for “Parent(s)” for Chronic fatigue syndrome it states “To be retired”. To which class does “To be retired” refer?

I should be most grateful if these queries could be clarified before the October meeting of CFSAC Committee in order that I might inform Professor Jason and his fellow committee members of current proposals, with the caveat that the Alpha draft is a work in progress.

Sincerely etc.

On April 21, 2011, I raised the following with Dr Bedirhan Üstün, Coordinator: Classifications, Terminology and Standards, Department of Health Statistics and Information, WHO, Geneva, following receipt of a communication from Dr Üstün. I have received no response.

Re: Information Sharing

[Responses to  Dr Üstün’s communication redacted]

For information on the ICD timeline and targets, I have relied on this February 2011 public domain document published by WHO-FIC:

http://www.who.int/classifications/network/Council_report_2011_16Feb.pdf

Report council conference call 2011-02-16

Page 6, 7: ICD-11, Alpha Draft; ICD-11 Beta Draft and Timeline

I have also relied on publicly accessible background documents to the ICD Revision Process Alpha Evaluation Meeting, namely the meeting Agenda and three of the MS PowerPoint presentations that are published on this page of the ICD-11 Revision website:

http://sites.google.com/site/icd11revision/home/face-to-face-meetings/software-development-meeting-11-april-2011

Since not all readers of my website will have PowerPoint reader programs installed (or not the most recent .pptx version) and since PDF versions were not available, I have posted selected slides on my site. If WHO is uncomfortable with my having uploaded public domain PowerPoint presentations to my website (or selected slides from these) in order to better inform my readers, who would otherwise need to visit the ICD Revision site, locate the documents and scrutinise them, then please advise and I will remove them forthwith.

On the issue of transparency of process:

It is very much welcomed that ICD Revision has aimed for transparency in some areas. For example, the production of YouTube videos from iCAMP meetings, particularly the two most recent training videos on the Content Model and operation of the iCAT, and also the placing of key Revision documents such as the Content Model Reference Guide and ICD Revision Project Plan, meeting agendas, background documents and PowerPoint presentations on the publicly accessible ICD Revision Google platform.

But there are areas where increased transparency would be welcomed.

For example, there have been no agendas or summaries of the meetings of the International Advisory Group for Mental and Behavioural Disorders published since the Summary of the 4th meeting in December 2008; there has been no summary of the 5th meeting which was understood from Dr Reed to have been held in late September 2009, and it is unestablished whether any further meetings of the International Advisory Group for Mental and Behavioural Disorders have taken place since then.

Since the APA, who participate in these meetings, do not publish agendas or summaries on the APA or DSM-5 Development websites, either, (which I consider the Task Force should remedy), it isn’t possible to access them from their websites, either. It may be the case that there is limited stakeholder interest in being able to access Int Advisory Group for MH meeting summaries, but nevertheless, since ICD Revision set out, in 2007, publishing these summaries on the WHO’s main website there is an expectation that ICD Revision would continue to do so.

In September 2009, I had raised several queries with Dr Jakob around the public visibility of the iCAT drafting platform, which included whether the names and affiliations of those acting as independent peer reviewers to the various TAGs, and external sources from whom input/opinion might otherwise be being sought would be identified via the iCAT to viewers outside the ICD revision process; whether COI disclosures would be required of external reviewers; whether the progress of proposals through the review Workflow would be transparent to viewers of the drafting platform beyond WHO, ICD Revision and IT personnel. These queries received no acknowledgement from Dr Jakob and a response has been left hanging.

It is understood that some professional bodies have been preparing submissions of proposals to various chapters of ICD but there is no information on any of the ICD Revision platforms about through what means organizations are invited to submit, which bodies/organizations/institutions may already have submitted or whether submissions are going to be collated and made publicly available by ICD Revision.

Last June, I had approached Dr Shakir with a request for clarification around specific ICD-10 categories in relation to what was visible at that point in the iCAT (with the caveat that I understand that the drafting platforms are “works in progress”). Although Dr Shakir responded that he had passed my queries onto TAG Neurology, they appear to have disappeared into a black hole and 9 months later I have still to receive a clarification.

The ICD-11 Blog appears to be moribund.

There is no mention of the most recent Geneva meeting on the ICD Revision Facebook site. Members of the public have left queries on the ICD Revision Facebook site since it was launched in 2009 but these often go unaddressed. In January, I again queried the timeline for the release of a publicly viewable Beta draft: this time, the query has received no response at all.

If ICD-11 is going to set up platforms like Facebook for interaction with the public (as opposed to using them purely as noticeboards or as extensions to internal channels of communication to be used primarily by those directly involved in the revision process or attending iCAMP meetings) then there needs to be a mechanism in place whereby queries are responded to and within a reasonable timeframe – not months later – otherwise these platforms risk being perceived as purely tokenistic nods at public interaction.

The Revision Timeline:

Apart from the “Project milestones and budget” overview on Page 7 of the ICD Revision Project Plan document (which few stakeholders are likely to have downloaded) and what can be gleaned, surmised or established from meeting agendas and presentations, there is no definitive ICD Timeline posted on any of the WHO/ICD Revision websites.

There is an expectation that ICD Revision will endeavour to keep the public informed around projected timelines and targets.

But with no minutes or summaries of Int Advisory Group for MH, RSG meetings or TAG group meetings being published (for the majority of TAGs), there is little information readily available which sets out whether and when stakeholders might next anticipate a drafting platform to be made publicly accessible (the iCAT was abruptly removed from the public domain, without explanation, last November); or what status of stakeholder or communities of stakeholders would be permitted to interact with the platform when it is made publicly accessible; what constitutes a “stakeholder community” or the projected extent of that interaction.

So these are some of my concerns around ICD Revision and transparency.

As you are no doubt aware, the APA has recently shifted its schedule for release of a beta draft of proposals for changes to DSM-IV categories and criteria for a second, brief public review exercise in May/June, three months down the line to August/September but The Task Force made no announcement about this change of plan.

But I hope that given public uncertainty, and given the expectation that some form of beta would be ready and placed in the public domain in early May, this year, which is fast approaching, that ICD Revision will be issuing an information release or public statement soon that clarifies its intentions and when it does so, I shall be happy to publish a copy on my sites.

With kind regards etc

Last updated: February 6, 2012

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