World Health Assembly adopts ICD-11: When will member states start using the new edition?

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On May 25, 2019, the 72nd World Health Assembly voted unanimously to adopt the ICD-11, the next edition of the International Classification of Diseases (ICD).

Endorsement won’t come into effect until January 1, 2022, which is the earliest date that member states can begin using ICD-11 for reporting data.

A stable version of the ICD-11 MMS was released in June 2018 to enable member states to begin planning for implementation.

ICD-11 is an electronic classification containing over 55,000 codes and a considerably more complex product than ICD-10. It has been designed to incorporate or link with other ICD classifications, such as the International Classification of Functioning, Disability and Health (ICF), the WONCA* developed International Classification of Primary Care (ICPC), and with the SNOMED-CT and OrphaNet terminologies.

Even the earliest implementers will need several years to evaluate the new edition, determine how they will use ICD-11, complete translations, produce training and implementation materials and prepare their health systems for migration. Japan is understood to be well advanced with translations and planning.

There is no mandatory implementation date: member states will migrate to ICD-11 at their own pace and according to their countries’ needs and resources but there is an expectation that countries will start planning for transition. Some member states may need to develop clinical modifications of ICD-11 for country specific use. A few countries still use ICD-9.

Global implementation of the new edition will be a patchy and prolonged process and during the transition period, WHO will be accepting data reported using both ICD-10 and the new ICD-11 code sets until the majority of member states have transitioned to the new edition. WHO has said that the last update to ICD-10 will be Version 2019.

No member states have announced timeline projections but below is a round-up of ICD-11 transition planning activities already in progress:

*World Organization of National Colleges, Academies and Academic Associations of General Practitioners/Family Physicians.

 

NHS England

NHS England mandates the use of ICD-10 in secondary care (currently using ICD-10 Version 2015).

As a WHO Collaborating Centre and designated UK Field Trial Centre, NHS Digital has taken part in ICD-11 Field Trials.

NHS Digital has said:

No decision has been made for the implementation of ICD-11 in England, however NHS Digital plan to undertake further testing of the latest release and supporting products that will inform a future decision.

NHS Digital Delen: ICD-11 resources page

Proposed Future Additions

Over the coming months, NHS Digital would like to engage and invite all users of ICD to participate and interact with the review process.

To support this, we are proposing to add the following information to our Delen site;

  • A mechanism for questions, issues, concerns and errors relating to ICD-11 to be raised to us as the UK Field Trial Centre.
  • A high-level overview of our future plans
  • Presentations providing more information on ICD-11
  • e-Learning materials to support familiarisation with ICD-11. Topics to include post coordination / cluster coding, chapter and code structure, chapter specific changes and notes, conventions etc
  • Further testing – parallel coding in ICD-10 in real-time. If you would be interested in taking part in this please let us know by emailing icd-11@nhs.net

Until NHS England has implemented ICD-11, the mandatory classification system for use in the NHS remains ICD-10.

Since April 2018, SNOMED CT (which replaces the Read Codes/CTV3 clinical terminology) has been the mandatory terminology system for use in NHS primary care at the point of contact and forms an integral part of the electronic patient record (EPR).

SNOMED CT terminology system is already used in some secondary care settings but is planned to be implemented across all secondary care, acute care, mental health, community systems, dentistry and other systems used in direct patient care by April 2020.

SNOMED CT terminology system and clinical classifications, like ICD-10, work together to fulfil different needs:

Source: Presentation: NHS Digital: Clinical Coding for non coders – Overview of clinical coding, how ICD-10 and SNOMED CT work together, and the role of the Clinical Classifications Service.

For more information on the planning that will be required before ICD-11 can be implemented within the NHS, see BETA – Clinical Information Standards, section: ICD-11 and the new Procedure Based Classification (PBC).

Resources:

NHS Digital Delen Home Page

NHS Digital SNOMED CT resources

SNOMED CT UK Edition browser

 

Australia

Australia uses a modification of the WHO’s ICD-10, known as ICD-10-AM [1].

Australian classification standards and statistics agencies were well represented on the ICD-11 Joint Task Force, with 5 of the Joint Task Force’s 21 members representing Australia, plus co-chair (Dr James Harrison, Director, Research Centre for Injury Studies, Flinders University, Adelaide) and observer (Dr Richard Madden, Professor of Health Statistics and Director National Centre for Classification in Health, University of Sydney).

For comparison, the UK had only an observer on the Joint Task Force; the U.S. had 4 participants and an observer.

The Australian Institute of Health and Welfare (AIHW) has been conducting a review of ICD-11 to inform and assist decision-makers about the new edition and its potential for adoption in Australia, see Post: #349: Australia: Potential adoption of ICD-11: Pre-consultation for decision makers.

1 Australian Consortium for Classification Development

 

Canada

Canada uses a modification of the WHO’s ICD-10, known as ICD-10-CA, developed by Canadian Institute for Health Information (CIHI) [1].

CIHI is participating in the testing of ICD-11 and assessing the implications for potential implementation in Canada.

CIHI has said that no decision has been made for the implementation of ICD-11 in Canada and that they are currently working on a number of initiatives to better understand the differences between ICD-10-CA and ICD-11 to help inform the business and statistical implications of adoption.

April 15, 2019 webinar:

https://www.cihi.ca/en/submit-data-and-view-standards/codes-and-classifications/icd-11

https://www.cihi.ca/fr/normes-et-soumission-de-donnees/codification-et-classification/cim-11

Canadian Institute for Health Information (CIHI) Webinar: Introduction to ICD-11

Introduction to ICD-11 — Part 1 Transcript and Recording

https://www.cihi.ca/en/bulletin/webinar-introduction-to-icd-11-part-1

https://www.cihi.ca/fr/bulletin/webinaire-introduction-a-la-cim-11-partie-1

Introduction to ICD-11 — Part 2 Transcript and Recording

https://www.cihi.ca/en/bulletin/webinar-introduction-to-icd-11-part-2

https://www.cihi.ca/fr/bulletin/webinaire-introduction-a-la-cim-11-partie-2

 

1 Version 2018 ICD-10-CA/CCI, Canadian Coding Standards and related products

 

United States

The National Center for Health Statistics (NCHS) is the federal agency responsible for the use of ICD-10 in the United States.

ICD-10 has been used in the U.S. to code and classify mortality data from death certificates since January 1999. NCHS developed a clinical modification of ICD-10 for morbidity purposes (ICD-10-CM) which replaced ICD-9-CM on October 1, 2015.

Since its initial launch, in 2007, the U.S. has maintained high level participation in the ICD-11 development process and its ongoing update and improvement:

The U.S. provided representatives from professional and scientific organisations, academics and practitioners for the ICD-11 Topic Advisory Groups (TAGs) and sub working groups. Stanford Center for Biomedical Informatics Research developed the web based iCAT Collaborative Authoring Platform on which ICD-11 was developed.

The U.S. has representatives on the ICD-11 governance committees via the WHO-FIC Network; the Medical Scientific Advisory Committee (MSAC); the Classifications and Statistics Advisory Committee (CSAC); the Mortality and Morbidity (MbRF) Reference Groups; and the Functioning and Disability Reference Group, which have oversight for the annual updating and ongoing improvement of the global ICD-11 edition.

Dr Geoffrey Reed (WHO, Geneva; Columbia University) is Senior Project Lead for the ICD-11 Mental Health chapter and a member of the MSAC; Steven Hyman, MD (former Director of the National Institute of Mental Health (NIMH) and former DSM-5 Task Force member) chaired the Topic Advisory Group for Mental Health; Michael B First, MD has served as a key external advisor to the Mental Health chapter.

Dr Christopher Chute (John Hopkins University) chaired the ICD-11 Revision Steering Committee, was a member of the Joint Task Force and now chairs the MSAC; Donna Pickett (Chief, Classifications and Public Health Data Standards, NCHS, Centers for Disease Control and Prevention, Head, Collaborating Center for the WHO-FIC in North America) co-chaired the Morbidity TAG, was a member of the Joint Task Force and is a member of the CSAC; Dr Robert Anderson (Chief, Mortality Statistics Branch Division of Vital Statistics, Centers for Disease Control and Prevention) was a member of the Joint Task Force and co-chaired the Mortality TAG; Cille Kennedy (ASPE) co-chaired the ICD-11 Functioning TAG; Sue Bowman (Senior Director of Coding Policy and Compliance, AHIMA) is a representative on the ICD-11 Morbidity Reference Group (MbRF).

Around 25 member states have modified ICD-10 for country specific use.

WHO is still formulating policies around the licensing of ICD-11 but it is understood that the intention is to limit development of national modifications.

See Presentation slides #36-38 for more information on licensing and the development of country modifications: Insights into the Next Revision: Like Texas, Everything is Bigger in ICD-11, Kathy Giannangelo, RHIA, CCS, CPHIMS, FHIMA, Texas Health Information Management Association.

It would be premature to speculate when the U.S. might be ready to migrate to ICD-11 for mortality (cause of death reporting) and whether ICD-11 will be adequate as a morbidity classification system for U.S. use or whether NCHS will need to develop a clinical modification, as it did for ICD-10.

It was put forward at the June 5-6, 2019 NCVHS meeting that the U.S. might potentially use ICD-11 unmodified if WHO were to incorporate some additional terms within the global ICD-11 edition.

NCVHS has initiated the process of planning for transition to ICD-11 at the federal level.

In February 2019, William W Stead, MD, Chair, NCVHS, sent a letter to the Secretary of Health and Human Services (HHS) recommending a simplified process for adopting future versions of ICD. The letter also recommended that HHS should invest now in an ICD-11 evaluation project and develop a plan to enable a smooth, transparent transition from ICD-10 to ICD-11 at the optimal time.

 

NCVHS meetings:

A National Committee on Vital and Health Statistics Full Committee Meeting was held on June 5-6, 2019.

Agenda: Full Committee Meeting-June 5-6, 2019

Presentations were given for Agenda item: ICD-11 Project:

Recording Mp3: Full Committee Meeting-June 5, 2019

Agenda item: ICD-11 Project: presentations and discussions starts 2hrs: 50 mins in from start; closes 5hrs 55mins from start.

Meeting summary: To follow

Transcript: To follow

Presentation slides: To follow

 

Forthcoming NCVHS meeting:

NCVHS Subcommittee on Standards is holding an ICD-11 Evaluation Expert Roundtable Meeting on August 6-7, 2019.

Location, agenda, meeting materials: To follow

 

1 WHO Group Discusses ICD-11 Transition Planning report by Sue Bowman, MJ, RHIA, CCS, FAHIMA for Journal of AHIMA (American Health Information Management Association)

2 Presentation: Status on ICD-11: The WHO Launch National Committee on Vital and Health Statistics, July 18, 2018, Donna Pickett, Chief, Classifications and Public Health Data Standards, Head, Collaborating Center for the WHO-FIC in North America; Robert N. Anderson, PhD Chief, Mortality Statistics Branch Division of Vital Statistics

 

WHO-FIC Africa

WHO-FIC Africa Collaborating Centre has said:

ICD-10 is the current standard for Morbidity (cause of illness) and Mortality (cause of death (COD) coding.

The ongoing implementation and maintenance of ICD-10 for mortality and morbidity coding remain a core focus of the WHO-FIC Collaborating Centre (African region). Following the release of ICD-11 MMS in June 2018, there will be increasing focus on ICD-11 in the work plan of the collaborating centre. Inputs to the development of ICD-11 are essential to ensure that the classification meets regional needs.

WHO-FIC Africa News: WHO on the Implementation of ICD-11, November 2018:

WHO-FIC collaborators met in Pretoria (South Africa) on 7 November 2018, discussing the implications for implementing ICD-11 and ICHI. We linked up with Nenad Kostanjsek from WHO (Geneva), who shared his thoughts about the preparation for implementation of ICD-11.

Download presentation slides

 

Other member states

This table from the eHealth DSI Semantic Knowledge Base project compiles information provided from a number of member states on their use of ICD (or a modification of ICD) and their plans regarding potential future implementation of ICD-11. Information provided by: Austria, Belgium, Croatia, Cyprus, Czech Republic, Estonia, France, Germany, Greece, Hungary, Ireland, Italy, Luxenbourg, Malta, Netherlands, Portugal, Slovenia and Spain.

Table: Current status of the use of ICD by eHDSI deploying countries (2018)

Resources:

ICD-11: The 11th Revision of the International Classification of Diseases – Site maintained by eHealth DSI Semantic Community providing resources for ICD-10, ICD-11, ICD derivative classifications and other classification and terminology systems

Insights into the Next Revision: Like Texas, Everything is Bigger in ICD-11, Kathy Giannangelo, RHIA, CCS, CPHIMS, FHIMA, Texas Health Information Management Association

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ICD-11 implementation package

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On Saturday, May 25, 2019, member states meeting at the 72nd World Health Assembly voted unanimously to approve the draft resolution to adopt the Eleventh revision of the International Classification of Diseases. The resolution passed with no amendments.

Adoption comes into effect on January 1, 2022, subject to transitional arrangements. After this date, member states can start using or transitioning to the ICD-11 codes when they have prepared their health systems for migration from earlier editions.

Source: Presentation slides: Dr Robert Jakob, November 2018 Information session on ICD-11

 

The two key documents for Agenda Item 12.7 Eleventh revision of the International Classification of Diseases are:

A72/29 Add.1
Eleventh revision of the International Classification of Diseases
Draft Resolution

A72/29
Eleventh revision of the International Classification of Diseases
Report by the Director-General

 

Implementation package

The World Health Organization (WHO) has prepared an implementation package. These tools can be accessed at ICD-11.

 

1) ICD-11 Implementation or Transition Guide (version 1.05, May 2019)

This document is a part of the ICD11 implementation package¹ developed by the World Health Organization. This document also provides some background related to the development of the ICD11 and its components. The document outlines essential issues that countries need to consider in the lead up to and during the transition from an existing ICD environment to the eventual implementation of ICD11.

1 The ICD-11 implementation package comprises the Classification System, the Coding Tool, Browser and all supporting documents including the Reference Guide and Implementation Guide, and a set of tools. Source: ICD-11 Implementation or Transition Guide, Geneva: World Health Organization; 2019; License: CC BY-NC-SA 3.0 IGO.

 

2) Coding tool (multilingual)

Index based search tool.

See Additional resources [1] for NHS overview of ICD-11 Coding Tool.

 

3) ICD-11 browser for Mortality and Morbidity Statistics (MMS)

Blue ICD-11 MMS platform (current release: 04 / 2019)

English: https://icd.who.int/browse11/l-m/en

Spanish: CIE-11 para estadísticas de mortalidad y morbilidad (Versión : 04 / 2019): https://icd.who.int/browse11/l-m/es

See Additional resources [2] for NHS overview of ICD-11 MMS Browser and [3] for general overview of ICD-11.

 

4) ICD-11 Reference Guide (version 11-04-2019)

Detailed guide to ICD-11 and how to use it; update and maintenance workflow; updating cycles; requirements for proposal submission.

 

5) ICD-10 / ICD-11 mapping Tables

Map ICD-11 codes to and from ICD-10 (links to Zip file; crosswalks in Text and MS Excel formats)

 

6) Orange ICD-11 Maintenance Platform

English: https://icd.who.int/dev11/l-m/en

The audience for this site is the maintainers, contributors and translators of the classification. The content of the Orange browser is not the released version of the classification. The content is updated on a daily basis to incorporate changes approved since the most recent release of the Blue ICD-11 browser for Mortality and Morbidity Statistics (MMS).

The Orange Maintenance Platform incorporates the ICD-11 Proposal Mechanism (a proposal and commenting tool for which registration is required). Once an account is registered, new proposals, comments and suggestions for changes and enhancements to existing content can be submitted and notifications set up. For help with submissions see: Maintenance Platform User Guide.

 

Specialty versions and derived classifications

Specialty versions provide more detail for particular user groups, such as Mental Health, Neurology, Dermatology and less detail for primary care or low diagnostic resource settings.

For ICD-11, the WHO Department of Mental Health and Substance Abuse has developed a companion publication to ICD-11 Chapter 06 for mental health professionals, general clinical, educational and service use.

The Clinical Descriptions and Diagnostic Guidelines for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders (CDDG) provides expanded disorder descriptions and includes: essential (required) features, severities, boundaries with other disorders and normality, differential diagnoses, additional features and culture-related features.

WHO has given no firm release date but says the CDDG will be published “as soon as possible” following approval of the overall system by the WHA¹.

Also under development is the ICD-11 PHC – a clinical guideline written in simpler language to assist non-mental health specialists, especially primary care practitioners and non medically trained health workers, and for use in low resource settings and low- to middle-income countries with the diagnosis and management of 27 mental disorders. No finalization and publication date is available. Like the ICD-10 PHC (1996), this revised edition will not be a mandatory classification for member states.

1 Reed GM, First MB, Kogan CS, et al. Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders. World Psychiatry. 2019;18(1):3-19.

 

Linkages with other classifications and terminologies

ICD11 incorporates or links with the following classifications and terminologies through the ICD11 Foundation:

• International Classification of Disease for Oncology – ICD-O
• International Classification of External Causes of Injury – ICECI
• International Classification of Functioning, Disability and Health – ICF
• International Classification of Primary Care – ICPC [Ed: developed/maintained by WONCA]
• Other terminologies such as OrphaNet and SNOMED-CT

Source: ICD-11 Implementation or Transition Guide, Geneva: World Health Organization; 2019; License: CC BY-NC-SA 3.0 IGO.

 

Additional resources:

1 NHS Digital: ICD-11 Coding Tool Overview, September 2018

2 NHS Digital: ICD-11 Browser Overview, September 2018

3 NHS Digital: ICD-11 Overview

4 Presentation: Information session on ICD-11 Dr Robert Jakob, Team Leader, WHO, Geneva, Classifications, Terminologies and Standards, November 2018

Presentation: NHS Digital: Clinical Coding for non coders – Brief overview of clinical coding and the role of the Clinical Classifications Service

6 ICD-11: The 11th Revision of the International Classification of Diseases – Site maintained by eHealth DSI Semantic Community providing resources for ICD-10, ICD-11, ICD derivative classifications and other classification and terminology systems

Australia: Potential adoption of ICD-11: Pre-consultation for decision makers

Post #349 Shortlink: https://wp.me/pKrrB-4Nr

After 11 years in development, the World Health Organization (WHO) released an advance “preview” version of ICD-11 in June 2018 to enable member states and other stakeholders to evaluate the new edition and start the process of planning for potential adoption and implementation.

This “preview” release was replaced with a slightly revised version in December 2018. In April 2019, another release was posted: ICD-11 for Mortality and Morbidity Statistics (Version : 04 / 2019)*

In May, this year, the WHO intends to present the ICD-11 MMS for endorsement at the 72nd World Health Assembly (Geneva, May 22–28, 2019).

If endorsed, the WHA’s endorsement would not take effect until January 2022. After this date, member states can begin using the new edition for reporting. It is anticipated that early implementers will take several years to prepare their countries for transition from ICD-10 to ICD-11.

Delaying the effective endorsement date to January 2022 also allows the WHO additional time for review and revision of implementation and end-user support materials, for preparation of ICD-11’s specialty versions and derivative publications, and to clear a backlog of unprocessed proposals.

England’s NHS Digital has yet to publish a timeline for evaluation and potential implementation of ICD-11.

*Note that the Blue ICD-11 MMS “Version for preparing implementation” does not include the same level of detail that the Orange “Maintenance Platform” contains.

 

Australia: Potential adoption of ICD-11: Pre-consultation for decision makers

The Australian Institute of Health and Welfare (AIHW) is conducting a review of ICD-11 to inform and assist decision-makers about the new edition and its potential for adoption in Australia.

Flyer

Extracts:

The World Health Organization’s International Classification of Diseases, Tenth Revision (ICD-10) is used to standardise the way we report causes of death across the world. Australia uses ICD-10 for coding mortality (cause of death) and ICD-10-AM for coding of diseases and related health problems in hospitals (morbidity). The WHO’s Eleventh Revision of ICD (ICD-11) brings the reporting of mortality and morbidity into one classification.

Countries have been given a version of ICD-11 to start looking at how it might be implemented for reporting. The WHO anticipates that ICD-11 will be presented to the World Health Assembly (the decision-making group of WHO) in May 2019 which will pave the way for countries to begin the adoption of ICD-11.

ICD-11 Review for Australia

The Australian Institute of Health and Welfare (AIHW) is conducting a review of ICD-11 to inform and assist decision-makers about ICD-11 and its potential for adoption in Australia.

The AIHW is designated as the Australian Collaborating Centre (ACC) for the WHO’s Family of International Classifications. The membership of the ACC is Australian and New Zealand organisations that have an interest and experience in working with health classifications. The work of the ACC has contributed to the development of ICD-11.

Contribute to the Review

If you have comments about the potential adoption of ICD-11 in Australia please contact the AIHW project team: Email: who-fic-acc@aihw.gov.au

 

Pre-Consultation document

Extracts:

ICD-11 was released by the WHO in an advanced ‘preview’ version in June 2018 and is expected to be formally presented to the Seventy-second World Health Assembly in May 2019 for official endorsement by Member States.

If endorsed, ICD-11 will then be available for implementation by Member States and there is an expectation by the WHO that its Member States will take steps to begin using ICD-11 in some capacity, whether that be exclusively for mortality purposes or for more broader application in morbidity systems and beyond.

The Australian Institute of Health and Welfare (AIHW) is conducting a review of ICD-11 to inform and assist decision-makers about ICD-11 and its potential for adoption in Australia.

The aim of stakeholder consultation is to identify all issues relevant to a potential adoption of ICD-11 so that, if and when, Australia decides to adopt ICD-11 it can start to ready its relevant systems, processes and people for implementation in some capacity.

A decision to adopt and implement ICD-11 would require a detailed understanding of the stakeholders impacted, the resources needed, the time frames required, and the impact on existing workforces.

The WHO has ceased to update ICD-10 and this will, over time, result in ICD-10 and ICD-10-AM becoming out of date. However, a decision to adopt ICD-11 for use in Australia has not yet been made. A lot of research and consultation will need to be undertaken before such a decision could be made and this may take several years. In addition, it is anticipated that several years lead time will be required for implementation of ICD-11 once a decision is made to implement.

 

See full document for stakeholder questions for decision-makers.

Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2

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Update: With regard to a new parent class: Functional clinical forms of the nervous system proposed for inclusion within the ICD-11 Diseases of the nervous system (Neurology) chapter, see Stone et al paper:

Functional disorders in the Neurology section of ICD-11: A landmark opportunity

Jon Stone, FRCP, Mark Hallett, MD, Alan Carson, FRCPsych, Donna Bergen, MD and Raad Shakir, FRCP

Neurology December 9, 2014 vol. 83 no. 24 2299-2301

doi: 10.1212/WNL.0000000000001063

Full free text:

http://www.neurology.org/content/83/24/2299.long

Full free PDF:

http://www.neurology.org/content/83/24/2299.full.pdf+html

 

As previously posted:

Part two of a three part report on the status of ICD-11 proposals for the classification of the three ICD-10 entities:

G93.3 Postviral fatigue syndrome (coded under parent class G93 in Tabular List)

Benign myalgic encephalomyelitis (inclusion term to G93.3 in Tabular List)

Chronic fatigue syndrome (indexed to G93.3 in Volume 3: Alphabetical Index)

 

Part 1: Status of the ICD-11 development process published September 29, 2014

 

Part 2: Status of proposals for the classification of PVFS, BME, and CFS in the public version of the ICD-11 Beta drafting platform

Seven years into the development process and it’s still not known how ICD-11 intends to classify the three G93.3 terms.

Sub working groups were formed under TAG Neurology with responsibility for the restructured disease and disorder blocks proposed for ICD-11’s Diseases of the nervous system chapter.

It hasn’t been established which of the various sub working groups has responsibility for making recommendations for the revision of the G93.3 terms or who the members of the subgroup(s) and its external advisers are.

Neurology Topic Advisory Group (TAG) sub working groups:

Neurology TAG sub working groups

Source: Slide #16: Summary of progress, Neurology Advisory Group, Raad Shakir (Chair): http://www.hc2013.bcs.org/presentations/s1d_thu_1530_Shakir_amended.ppt

 

No journal papers, editorials, presentations or public domain progress reports have been published, to date, on behalf of TAG Neurology that discuss emerging proposals or intentions for the classification of the three G93.3 terms for ICD-11.

The public version of the Beta drafting platform displays no editing change histories or category notes. Until the three terms have been restored to the Beta draft the public is reliant on what information WHO/ICD Revision chooses to disclose, which thus far, has been minimal.

Currently, there is no information within the Beta draft for proposals for these three terms. The continued absence of these terms from the draft (now missing for over 18 months) is hampering professional and public stakeholder scrutiny, discourse and comment.

This is not acceptable for any disease category given that ICD Revision is being promoted by WHO’s, Bedirhan Üstün, as an open and transparent process and inclusive of stakeholders.

This next section summarizes the most significant changes since May 2010 for several iterations of the Neurology chapter, during the Alpha and Beta drafting phases, as displayed in the public version of the draft.

 

Tracking the progression of the G93.3 terms through the Alpha and Beta drafting stages

In May 2010: the ICD-10 G93 legacy parent class: Other disorders of brain was retired and a change in hierarchy for class Postviral fatigue syndrome recorded. See Notes Tree screenshot [12].

A Definition was inserted for Chronic fatigue syndrome. See Change history screenshot [13].

Chronic fatigue syndrome replaced Postviral fatigue syndrome as the new ICD Title term and now sat directly under parent class: Other disorders of the nervous system.

Benign myalgic encephalomyelitis was specified as an Inclusion term under Synonyms to new ICD Title term: Chronic fatigue syndrome. See Alpha draft screenshot [14].

Postviral fatigue syndrome was at that point unaccounted for in the Alpha draft.

By July 2012: 13 additional terms were now listed under Synonyms, including Postviral fatigue syndrome, and two terms imported from the yet to be implemented, ICD-10-CM (the ICD-10-CM Chapter 18 R53.82 codes: chronic fatigue syndrome nos and chronic fatigue, unspecified).

The Definition field was now blanked.

At this point, ICD Title term: Chronic fatigue syndrome was no longer displaying as a child category directly under parent class: Other disorders of the nervous system.

The listing for Chronic fatigue syndrome now appeared under a new “Selected Cause” subset, which displayed as a sub linearization within the Foundation Component. The purpose of this subset, which aggregated many terms from Neurology and other chapters, was not evident from the Beta draft.

By November 2012: ICD Revision had re-inserted a scrappy, revised Definition for Chronic fatigue syndrome. I have sourced this draft definition to an internal ICD Revision/Stanford Protege document (line 1983):

Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.

 

Below is a screenshot from the Beta draft taken in July 2012, before a Definition for Title term, Chronic fatigue syndrome had been re-inserted.

(It isn’t evident in the screenshot, but the asterisk at the end of Benign myalgic encephalomyelitis displayed a hover text denoting its specification as the Inclusion term to ICD Title term, Chronic fatigue syndrome. Also not evident in this cropped screenshot is the listing of Postviral fatigue syndrome under Synonyms.)

July2512

Source: ICD-11 Beta drafting platform, July 25, 2012.

This “Selected Cause” sub linearization was later removed from the public Beta draft and some of the terms that had been listed under it were restored to the Neurology chapter and to other chapters. But ICD Title term, Chronic fatigue syndrome, its Inclusion term and list of Synonyms were not restored to any chapter.

Since February 2013: no listing can be found in any chapter of the public version of the Beta draft, under any linearization, for any of the terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis or Chronic fatigue syndrome, as uniquely coded ICD Title terms, or as Inclusion terms or Synonyms to Title terms, or in the ICD-11 Beta Index.

Since June 2013: My repeated requests for an explanation for the absence of these three terms from the Beta draft and for ICD Revision’s intentions for these terms were ignored by ICD Revision until July 2014, when a response was forthcoming from ICD Revision’s, Dr Geoffrey Reed.

(It is understood that Annette Brooke MP also received a response, in July, from WHO’s, Dr Robert Jakob, in respect of the joint organizations’ letter of March 18, for which Ms Brooke had been a co-signatory.)

 

What clarifications have been given?

Feb 12, 2014: An unidentified admin for the @WHO Twitter account replied to a member of the public: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11.” A similar affirmation was tweeted by Gregory Hartl, head of public relations/social media, WHO.

 

July 24, 2014: Geoffrey Reed PhD (Senior Project Manager for revision of Mental and behavioural disorders) replied to Suzy Chapman, by email:

Dr Reed stated inter alia that the placement of ME and related conditions within the broader classification is still unresolved.

That he had no influence or control over this process; his authority being limited to coordinating recommendations related to conditions that should or should not be placed in the chapter on Mental and behavioural disorders.

That there has been no proposal and no intention to include ME or other conditions such as fibromyalgia* or chronic fatigue syndrome in the classification of mental disorders.

That the easiest way to make this absolutely clear will be through the use of exclusion terms. However, he would be unable to ask that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily Distress Disorder) until the conditions that are being excluded exist in the classification. That at such time, he would be happy to do that.

That since his purview does not extend to the section on classification of Diseases of the nervous system or other areas outside the Mental and behavioural disorders chapter, he was unable to provide any information related to how these conditions will be classified in other chapters.

That he was unable to comment about the management of correspondence by other TAG groups and signposted me to Dr Robert Jakob [the senior classification expert who had been copied into the joint organizations’ letter to WHO/ICD Revision, in March] whose role relates to the overall coordination of the classification.

 

*Fibromyalgia remains classified under ICD-11 Beta draft public version chapter “Diseases of the musculoskeletal system and connective tissue” under parent: Certain specified soft tissue disorders, not elsewhere classified.

Irritable bowel syndrome remains classified under ICD-11 Beta draft public version chapter “Diseases of the digestive system” under: Functional gastrointestinal disorders > Irritable bowel syndrome and certain specified functional bowel disorders.

 

In August, I submitted two FOI requests, one to the Scottish Health Directorate, one to the English Department of Health. The latter was not deemed specific enough in terms of named health agencies for a response to be generated and will require resubmission.

September 24, 2014: FOI request fulfilled by (SCOTLAND) ACT 2002 (FOISA), received from David Cline, Unit Head, Strategic Planning and Clinical Priorities Team, by email: 

The Quality Unit: Health and Social Care Directorates
Planning & Quality Division

[Addresses redacted]

Your ref:  FoI/14/01460

24 September 2014

REQUEST UNDER THE FREEDOM OF INFORMATION (SCOTLAND) ACT 2002 (FOISA)

Thank you for your request dated 27 August 2014 under the Freedom of Information (Scotland) Act 2002 (FOISA)…

 

Your request

Under the Freedom of Information (Scotland) Act 2002, please provide the following.

Please send me copies of all correspondence, emails, letters, minutes relating to:

Enquiries made by Scottish Health Directorate to World Health Organization (WHO), 20 Av Appia, CH-1211, Geneva, in respect of:

Classification of the three ICD-10 (International Classification of Diseases 10th edition) G93.3 coded disease terms in the forthcoming revision of ICD-10, to be known as ICD-11:

Postviral fatigue syndrome (Post viral fatigue syndrome; PVFS)

Benign myalgic encephalomyelitis (myalgic encephalomyelitis; myalgic encephalitis; ME);

Chronic fatigue syndrome (CFS; CFS/ME, ME/CFS)

During the period:

1] January 1, 2013 – December 31, 2013

2] January 1, 2014 – July 31, 2014

I also request copies of responses received from WHO in reply to enquiries made by Scottish Health Directorate during these periods in respect of the above ICD disease categories.

 

Response to your  request

Information held covering the time period indicated relates to an email exchange on 11 and 12 March 2014 as part of a request for advice in answering Ministerial correspondence.

On 11 March the World Health Organisation WHO were asked “I would be very grateful for your help in confirming the status of an element within the WHO’s ICD 11 regarding ME/CFS. On 25th February in the UK parliament, the Under-Secretary of State for Health informed the UK parliament that the WHO had publicy stated that there was no proposal  to reclassify ME/CFS in ICD-11…I would be very grateful if you can confirm that this is the case and if possible, provide a web link to the original wording so I can include this within the correspondence I am preparing”.

The WHO responded on 12 March; “The question regarding MS/CFS [sic] and ICD-11 has been asked recently by several different parties. At this point in time, the ICD-11 is still under development, and to handle this classification issue we will need more time and input from the relevant working groups. It would be premature to make any statement on the subject below.

The general information on ICD Revision can be accessed here: http://www.who.int/classifications/icd/revision/. The current state of development of ICD-11 (draft) can be viewed here (and comments can be made, after self registration): http://www.who.int/classifications/icd11 ”.

A further email on 12 March to the WHO asked; “It would be fair to say then …that work will continue on the draft with an expected publication in 2015?”.

WHO responded on 12 March; “Work on the draft will continue until presentation at the World Health Assembly in 2017. Before, reviews and field testing will provide input to a version that is available for commenting, as much as possible and proposals can be submitted online* with the mechanisms provided already.”

*Since the three terms are currently not accounted for within the Beta draft this impedes the submission of comments.

 

This is the sum total of what has been disclosed by WHO/ICD Revision in respect of current proposals for the classification of the three ICD-10 G93.3 terms, despite the fact that ICD-11 has now been under development for 7 years, and prior to the timeline extension in January 2014, the new edition had been scheduled for WHA approval and dissemination in 2015.

 

What might the working group potentially be considering? 

  • The terms may have been removed from the draft in order to mitigate controversy over a proposed change of chapter location, change of parent class, reorganization of the hierarchy, or over the wording of Definition(s). (Whether a term is listed as a coded Title term, or is specified as an Inclusion term to a coded term or listed under Synonyms to a coded term, dictates which of the terms is assigned a Definition. If, for example, CFS and [B]ME were both coded as discrete ICD Title terms, both terms will require the assigning of Definitions and other Content Model descriptors.)
  • TAG Neurology may be proposing to retain all three terms under the Neurology chapter, under an existing parent class that is still under reorganization, and has taken the three terms out of the linearizations in the meantime, or is proposing to locate one or more of the terms under a new parent class for which a name and location has yet to be agreed.
  • TAG Neurology may be proposing to locate one or more of these terms under more than one chapter, for example, under the Neurology chapter but dual parented under the Symptoms and signs chapter. Or multi parented and viewable under a multisystem linearization, if the potential for a multisystem linearization remains under discussion.
  • TAG Neurology may be proposing to retire one or more of these three terms (despite earlier assurances by senior WHO classification experts) but I think this unlikely. ICD-11 will be integrable with SNOMED CT, which includes all three terms, albeit with ME and BME listed as synonyms to coded CFS, with PVFS assigned a discrete SNOMED CT code.
  • Given the extension to the timeline, TAG Neurology may be reluctant to make decisions at this point because it has been made aware of the HHS contract with U.S. Institute of Medicine (IOM) to develop “evidence-based clinical diagnostic criteria for ME/CFS” and to “recommend whether new terminology for ME/CFS should be adopted.” Any new resulting criteria or terminology might potentially be used to inform ICD-11 decisions.

Other possibilities might be listing one or more of these terms under parent class, Certain specified disorders of the nervous system or under Symptoms, signs and clinical findings involving the nervous system, which is dual parented under both the Neurology chapter and the Symptoms and signs chapter.

All currently listed parent and child categories within the Neurology chapter can be viewed here:

Click on the small grey arrows next to Beta draft categories to display their parent, child and grandchildren categories, as drop down hierarchies.

Linearization display button1Select this coloured button to display symbols and hover text indicating which linearization(s) a selected term is listed under.

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1296093776

 

There is a new parent class proposed for the ICD-11 Neurology chapter called, Functional clinical forms of the nervous system, which Dr Jon Stone has been working on [15] [17].

Under this new Neurology chapter parent class, it is proposed to relocate or dual locate a list of “functional disorders” (Functional paralysis or weakness; Functional sensory disorder; Functional movement disorder; Functional gait disorder; Functional cognitive disorder etc.) which in ICD-10 are classified under the Chapter V Dissociative [conversion] disorders section.

The rationale for this proposed chapter shift for Conversion disorders/functional disorders is beyond the scope of this briefing paper.

In a 2013 editorial, Prof Raad Shakir (Chair, TAG Neurology) briefly discusses the proposed reorganization of what he calls the “rag bag of diverse and disparate diseases” that is parent class, Other disorders of the nervous system [16].

He writes, “In addition, there will also be a section on Functional disorders of the nervous system, reflecting the growing diagnostic importance of such syndromes.” 

It’s not clear whether this reference, in 2013, to the inclusion of a new section for “Functional disorders of the nervous system” within the Neurology chapter relates to the relocation or dual location of those “functional disorders” currently classified under Dissociative [conversion] disorders within ICD-10 Chapter V, or whether Prof Shakir was referring to potential inclusion within the Neurology chapter of a section for “Functional somatic syndromes.” But I consider the former more likely.

There is currently no inclusion within any chapter for a specific parent class for “Functional somatic syndromes,” or “Functional somatic disorders” or “interface disorders” under which, conceivably, those who consider CFS, ME, IBS and FM to be “speciality driven” manifestations of a similar underlying functional disorder might be keen to see these terms aggregated.

I shall return to the subject of “interface disorders” in Part 3.

 

There remain 6 important questions to be answered:

• under which chapter(s) are PVFS, BME and CFS proposed to be located?
• under which parent classes?
• what hierarchies are proposed, in terms of coded Title terms, Inclusions, Synonyms?
• which of the terms are to be assigned definitions?
• where will definitions be sourced from?
• when will the terms be restored to the draft to enable scrutiny and comment?

 

Extract, ICD-11 document Known Concerns and Criticisms:

“It may be true that some advocacy groups may give inputs in line with their vested interests or object to the listings in ICD-11 Beta. When such public controversy occurs, it is better to have it in an open and transparent discussion…”

Having obscured these terms from the Beta drafting platform eighteen months ago, with no explanation, ICD Revision Steering Group and TAG Neurology, which are both accountable to WHO, have disenfranchised professional and advocacy stakeholders from scrutiny of, and participation in what is being touted as an open and transparent process.

For Part 1 of this briefing document: Part 1: Status of the ICD-11 development process

In Part 3, I shall be setting out what is currently known about the status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11.

 

Important caveats: The public Beta platform is not a static document, it is a work in progress, subject to daily editing and revision, to field test evaluation and to approval by the RSG and WHO classification experts. Not all new proposals may survive the ICD-11 field tests. Chapter numbering, codes and “sorting codes” currently assigned to ICD categories are not stable and will change as chapters and parent/child hierarchies are reorganized. The public version of the Beta is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and omissions.

 

References for Part 2

12 https://dxrevisionwatch.files.wordpress.com/2010/05/2icatnotegj92cfs.png

13 https://dxrevisionwatch.files.wordpress.com/2011/02/change-history-gj92-cfs.png

14 https://dxrevisionwatch.files.wordpress.com/2011/05/icd11-alpha1-17-05-11.png

15 http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1614846095

16 Shakir R, Rajakulendran, S. The 11th Revision of the International Classification of Diseases (ICD) The Neurological Perspective JAMA Neurol. 2013;70(11):1353-1354. http://archneur.jamanetwork.com/article.aspx?articleid=1733323

17 Functional neurological disorders: The neurological assessment as treatment. Stone J. Neurophysiol Clin. 2014 Oct;44(4):363-73 http://www.ncbi.nlm.nih.gov/pubmed/25306077

Briefing paper on ICD-11 and PVFS, ME and CFS: Part 1

Post #315 Shortlink: http://wp.me/pKrrB-40E

 

Part one of a three part report on the status of ICD-11 proposals for the classification of the three ICD-10 entities:

G93.3 Postviral fatigue syndrome (coded under parent class G93 in Tabular List)

Benign myalgic encephalomyelitis (inclusion term to G93.3 in Tabular List)

Chronic fatigue syndrome (indexed to G93.3 in Volume 3: Alphabetical Index)

 

Part 1: Status of the ICD-11 development process

Part 2: Status of proposals for the classification of PVFS, BME, and CFS in the public version of the ICD-11 Beta drafting platform

Part 3: Status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11

 

Part 1: Status of the ICD-11 development process

The revision of ICD-10 and development of the structure for ICD-11 began in April 2007.

ICD-11 was originally planned for completion by 2012, but the timeline was extended to 2015 early in the development process.

In January 2014, WHO/ICD Revision extended the timeline by a further two years to allow more time for generation of content, peer review, field testing and evaluation, translations and transition preparations [1].

The current projected date for approval by the World Health Assembly (WHA) is May 2017 with implementation timelined for 2018+.

In July 2014, WHO issued a call for expressions of interest in a contract for an external interim assessment of the revision process. Due date for the assessment report is December 15, 2014. It is not known whether WHO intends to publish a summary of the external assessment report.

Once ICD-11 is ready for dissemination, WHO Member States will transition to the new edition at their own pace. There is no WHO mandated date by which ICD-11 must be implemented, but WHO has said that it won’t support the annual updating of ICD-10 indefinitely. Developing and low resource countries may take many years before migrating to ICD-11.

 

Print and electronic versions

The scope of the revision project is ambitious and technically very complex. The project is under-resourced and underfunded and there is no overall project manager. Work groups have complained about the burden of work and poor internal communications.

There will be an ICD-11 print edition and a more expansive computerized version planned to be integrable with the international SNOMED CT terminology system.

The electronic version has a Foundation Component which includes all the ICD-11 diagnostic categories arranged in hierarchical “trees.”

From the Foundation Component, subsets (known as “linearizations”) are derived that contain mutually exclusive lists of terms for different purposes, e.g. for mortality, morbidity or primary care.

There are anticipated to be linearizations for mental and behavioural disorders, low resource and high resource primary care settings, rare diseases and occupational health and speciality classifications, including neurology, paediatrics, ophthalmology and dermatology.

The public version of the Beta drafting platform currently displays only the Foundation Component and a Joint Linearization for Mortality and Morbidity Statistics.

The country specific “Clinical Modifications” of ICD-10, including the U.S.’s forthcoming ICD-10-CM, are expected to be incorporated into ICD-11, as linearizations, as is ICPC-2.

The development process is overseen by a Revision Steering Group (RSG) chaired by biomedical informatics expert, Christopher Chute, MD, Mayo Clinic, Rochester, MN [2].

 

Primary Care version

ICD-10 PHC (sometimes written as ICD-10-PHC or ICD10-PHC or ICD-10 PC), is a simplified version of the WHO’s ICD-10 chapter for mental and behavioural disorders for use in general practice and primary health care settings. This system has rough but not exact equivalence to mental disorders in the core ICD-10 classification.

The ICD-10 PHC describes 25 disorders commonly managed within primary care as opposed to circa 450 classified within Chapter V of ICD-10.

An revised version, known as ICD-11 PHC, is being developed simultaneously with the core version.

The ICD-11 Primary Care Consultation Group, chaired by Prof Sir David Goldberg, is charged with the revision of the 26 mental and behavioural disorders in ICD-10 PHC. The 28 mental disorders proposed for the new primary care edition (ICD-11 PHC) will require an equivalent category within the core ICD-11 version [5].

 

Work Groups

Over 20 work groups have been assembled since 2007 reporting to the RSG. These are known as Topic Advisory Groups (TAGs). Professional and scientific organisations also have representatives on the TAGs [3].

TAG Managing Editors may also recruit external reviewers for reviewing proposals and textual content. Terms of Reference for TAGs and work groups can be viewed in reference [4].

Reporting to the TAGs are sub working groups charged with making recommendations for specific chapter sections. TAG membership lists are available from the WHO site but the names of sub working group members and external reviewers are not posted.

The Work Groups with most relevance for the ICD-10 G93.3 categories are:

TAG Neurology (Diseases of the nervous system) Chair: Prof Raad Shakir, Managing editor: Tarun Dua, WHO.

TAG Mental Health (Mental and behavioural disorders) Co-Chairs: Geoffrey Reed, PhD, WHO; Steven Hyman, MD, Harvard University.

ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) Chair: Prof Oye Gureje. A sub working group to TAG Mental Health. Prof emeritus, Francis Creed, is a member. This group is said to have 17 members but apart from two others, I have been unable to establish the full membership list.

ICD-11 Primary Care Consultation Group (PCCG) Chair: Prof Sir David Goldberg, Vice-chair: Prof Michael Klinkman (U.S.). Per Fink’s research collaborator, Marianne Rosendal, is a member of the 12 person, PCCG. The full member list has been published in a journal paper [5] but is not posted on the WHO website.

 

Differences between ICD-10 and ICD-11

There are significant differences between the structure of ICD-10 and ICD-11: more chapters (currently 26 against ICD-10’s 22); reordering of chapters; restructuring of disease classes and parent/child hierarchies within chapters; renaming of some terms; relocation of some terms to other existing chapters or to new chapters; multiple linearizations; more descriptive content; a new system of code numbers.

Disease terms with an equivalent ICD-10 term are back referenced to their legacy terms and codes in the electronic platform for ICD-10 Version: 2010 [6].

 

Multiple parents and multisystem diseases

For ICD-10 Tabular List, an ICD entity (a parent class, title term or inclusion term) can appear in only one place within the classification.

For ICD-11, multiple parentage is permissible. In the Foundation Component, disorder or disease terms can appear under more than one hierarchical parent [7].

Diseases that straddle two chapters, like malignant neoplasms of the skin, can now be viewed under Diseases of the skin as well as cross-linking to the Neoplasms chapter. Premenstrual Dysphoric Disorder (PMDD), proposed for inclusion in ICD-11, is listed under both Depressive disorders, in the Mental and behavioural disorders chapter, and also under Premenstrual tension syndrome under new chapter, Conditions related to sexual health.

So the ICD-10 concept of discrete chapter location is being dispensed with for ICD-11.

In 2010, the Revision Steering Group posted a discussion paper on the potential for incorporating a new chapter into ICD-11 for Multisystem diseases, but this proposal has been rejected [8].

In 2013, consideration was being given, instead, for generating a multisystem diseases linearization – as a virtual chapter – compiled from the Foundation Component that lists all ICD disorders and diseases, but there would be no separate Multisystem diseases chapter within the print version [9].

It isn’t known whether a decision has been reached but there is currently no ability to generate a multisystem diseases linearization from the Foundation Component, at least not within the public version of the Beta drafting platform.

How to represent multisystem diseases within ICD-11 (and the potential for an ICD category term to be assigned to multiple parents) could have implications for classification of one or more of the three ICD-10 G93.3 terms.

 

The Content Model

Another major difference between ICD-10 and ICD-11 is the Content Model. For ICD-11, all uniquely coded ICD Title terms (but not their Inclusion terms or Synonyms) are intended to have Definitions and in some cases, other descriptive content populated [10]. Whereas category terms located in ICD-10 chapters other than Chapter V: Mental and behavioural disorders were listed, to quote WHO’s, Bedirhan Üstün, like a laundry list, with no descriptive content.

 

Outside of the WHO classification experts, the RSG, the working groups, sub working groups and their external advisers who else is inputting into the development process?

In 2009, ICD Revision Steering Group began inviting professional bodies and Royal Colleges to submit proposals for revisions to the ICD structure and content for ICD-11.

WHO has also set up a Global Clinical Practice Network (GCPN), an international network of over 11,000 mental health and primary care professionals [11].

Calls have gone out for various classes of professional stakeholder to register with the public version of the Beta draft to participate in the revision process:

Medicine; Nursing; Midwifery; Dentistry; Pharmacy; Health information management (coding, medical records); Environmental and occupational health and hygiene; Physiotherapy or Physical therapy; Nutrition; Social Sciences; Psychology; Social work and counseling; Epidemiology; Health Policy; Traditional and complementary medicine.

A pre-final draft for ICD-11 is expected to be released for public comment at some point in 2015/16, but no firm date for this has been announced.

 

How can stakeholders participate?

Professional stakeholders and others who register an interest are able to interact with the Beta drafting platform and access additional content, e.g. PDFs of the print versions and Index.

The public version of the Beta drafting platform can be viewed without registration but comments submitted by registered stakeholders are not visible to non registered viewers.

Comments and suggestions are screened and forwarded to the appropriate TAG Managing editors for review. Occasionally, a TAG Managing editor or one of the ICD Revision staff will respond to a proposal or a request for correction via the comments facility.

Registered stakeholders are permitted to:

• Add comments on and read other stakeholder comments on concepts; title terms; synonyms; inclusion terms; exclusions and other Content Model parameter terms;
• Comment on whether a category is in the right place;
• Comment on whether the category is useful for Primary Care; Research; Clinical;
• Suggest definitions (with sources) for a disease or disorder and comment on already populated draft definitions;
• Make proposals to change ICD categories, supported with references;
• Offer to participate in field trials (for professionals only);
• Offer to assist in translating ICD into other languages

Stakeholders can register for participation here: http://www.who.int/classifications/icd/revision/en/

Video inviting professional and stakeholder participation here: http://www.who.int/classifications/icd/revision/video/en/

The Beta platform is intended for considered and collegiate input – not as a platform for campaigning or activism.

Some patient advocacy organisations, for example, gender and trans* groups, have been holding face to face meetings with ICD Revision personnel at conferences or other venues to inform the revision process and represent their constituencies’ interests.

A new Proposals mechanism was launched on the public Beta draft in July 2014. This is a more sophisticated system through which registered users can submit proposals, supported with rationales and references, for changes/additions/deletions to proposed ICD-11 entities.

Proposals guide: http://apps.who.int/classifications/icd11/browse/Help/Get/proposal_main/en

 

Where to view the Beta drafting platform

ICD Revision and TAG Managing editors are developing the Beta draft on a separate electronic multi-authoring platform, known as the iCAT, on a server which is not accessible to the public.

The iCAT Beta platform is more layered than the Beta version which the public sees: it displays a larger number of “Content Model” parameters; there are tabs for tracking “Change Histories” and “Category Notes and Discussions” for comparing earlier iterations of a specific chapter section with the most recent edits. There are sub lists for terms that are proposed to be retired or for which decisions are needing to be made.

The public version of the Beta has no means through which changes to the draft (and rationales for changes) can be tracked, or for comparing, for example, an earlier edit of a specific chapter section with the most recent content.

The inability to monitor editing histories in the public Beta draft and the absence of progress reports from the work groups adds to confusion around interpretation of the Beta content. The draft is updated daily, so it needs checking every day for relevant changes.

You can view the public version of the Beta drafting platform here:
http://apps.who.int/classifications/icd11/browse/f/en

Foundation Component (the entire ICD universe):
http://apps.who.int/classifications/icd11/browse/f/en#/

Joint Linearization for Mortality and Morbidity Statistics:
http://apps.who.int/classifications/icd11/browse/l-m/en#/

User Guide: http://apps.who.int/classifications/icd11/browse/Help/en

 

Click on the small grey arrows next to the Beta draft categories to display their parent, child and grandchildren categories, as drop down hierarchies.

Linearization display button1Select this coloured button to display symbols and hover text indicating which linearization(s) a selected term is listed under.

The display panel on the right contains the “Content Model” text: Short and Long Definitions, Inclusion terms, Synonyms, Exclusions, Index terms etc. for the selected ICD Title term. Many terms are still awaiting population of Short Definitions (for print version) and Long Definitions (for electronic version), and other descriptive content.

For comparison between the public Beta draft and the iCAT, view this 2 minute iCAT screencast animation (with audio), intended as a demo for ICD Revision editors.

The animation is an .ogv file which should run in recent releases of Firefox but may not load in other browsers. If you don’t have the right program installed to run an .ogv file, the iCAT multi-authoring platform that the TAG editors are using looks like this:

iCAT editing platform 3

 

In Part Two, I shall be setting out what is currently known about proposals for the classification of Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome for ICD-11.

Important caveats: The public Beta platform is not a static document, it is a work in progress, subject to daily editing and revision, to field test evaluation and to approval by the RSG and WHO classification experts. Not all new proposals may survive the ICD-11 field tests. Chapter numbering, codes and “sorting codes” currently assigned to ICD categories are not stable and will change as chapters and parent/child hierarchies are reorganized. The public version of the Beta is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and omissions.

 

Part 2: Status of proposals for the classification of PVFS, BME, and CFS in the public version of the ICD-11 Beta drafting platform published September 30, 2014

Part 3: Status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11 [to follow]

 

References for Part 1

1 Committee for the Coordination of Statistical Activities, Twenty-second Session 4-6 September 2013, Items for discussion and decision: Item 8, provisional agenda, pp 8-10: http://unstats.un.org/unsd/accsub/2013docs-22nd/SA-2013-12-Add1-Health-WHO.pdf

2 http://www.who.int/classifications/icd/RSG/en/

3 http://www.who.int/classifications/icd/TAGs/en/

4 http://www.who.int/entity/classifications/TOR_TAGs_WGs.pdf?ua=1

5 Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Family Practice (2012) 30 (1): 76-87. Free text: http://fampra.oxfordjournals.org/content/30/1/76.full.pdf+html

6 http://apps.who.int/classifications/icd11/browse/f/en#/

7 http://apps.who.int/classifications/icd11/browse/Help/Get/architecture/en

8 https://dxrevisionwatch.files.wordpress.com/2010/10/considerations20on20multisystem_diseases_201008181.doc

9 http://informatics.mayo.edu/WHO/ICD11/collaboratory/attachments/208/19.Multisystem_Diseases_Chapter.v1.2.docx

10 http://www.who.int/classifications/icd/revision/contentmodel/en/

11 http://www.globalclinicalpractice.net/en/

Extension to timeline official: ICD-11 rescheduled for 2017

Post #292 Shortlink: http://wp.me/pKrrB-3H9

Update at February 8, 2014: ICD Revision has now updated its Timeline page:

May 2017 Present the ICD-11 to the World Health Assembly”

ICD-11_20177

In the last day or so, edited text on two WHO webpages confirms a decision by ICD Revision to postpone release of ICD-11 by a further two years, from 2015 to 2017.

From WHO site: “The International Classification of Diseases 11th Revision is due by 2017”

Also ICD Information Sheet: “…The development phase will continue for three years and ICD-11 will be finalized in 2017.”

And from a note accompanying a slide presentation: “…Now ICD 11 is scheduled in 2017 and ICD-10-CM can be made as a National Linearization.” Bedirhan Üstün, January 29, 2014 [1]

ICD-11 Revision has yet to issue a formal announcement or news release or update its Timeline page to reflect this decision.

There are no reports on the revised schedule on ICD-11 on Facebook or Twitter @WHOICD11 – all very low key.

Delaying the release of ICD-11 has been under consideration for several months.

+++
Slipping targets

The development process for ICD-11 began in April 2007, with ICD-11 scheduled for dissemination by 2012 and the timelines for the development of ICD-11 and DSM-5 running more or less in parallel [2,3].

Early on in the revision process, the ICD-11 dissemination date was extended. By 2009, the final draft was scheduled for World Health Assembly (WHA) approval in 2014. The WHA approval date was subsequently shunted to 2015 – four years later than originally planned.

ICD-11 is now scheduled for finalization in 2017.

Rationales for extending the timeline:

Pages 8-10: Committee for the Coordination of Statistical Activities, Twenty-second Session 4-6 September 2013, Items for discussion and decision: Item 8 of the provisional agenda, 3 September 2013 [4].

Slide presentation, Bedirhan Üstün, September 9-10, 2013, Slides 29-35: [5].

+++
Related reports from Dx Revision Watch

January 22, 2014: WHO Collaborating Centre confirms Revision Steering Group seriously considering extension to ICD-11 timeline: http://wp.me/pKrrB-3E8

September 15, 2013: WHO considers further extension to ICD-11 development timeline: http://wp.me/pKrrB-3sc

+++
References

1. Slideshare: AHIMA ICD-10 ICD-11 switch to ICD-10-CM in the USA, presentation note, Bedirhan Üstün, Coordinator at World Health Organization, January 29, 2014

2. Agenda Item No. 25: Revision of the International Classification of Diseases (ICD-10) and Involvement of Psychology International Union of Psychological Science Committee on International Relations Action, March 28–30, 2008
IUPsyS Mar 08 Agenda Item 25 ICD-10

3. Letter Saxena, WHO, to Ritchie, IUPsyS (International Union for Psychological Science), August 2007
Exhibit 1 WHO Letter Aug 07

4. Committee for the Coordination of Statistical Activities, Twenty-second Session 4-6 September 2013, Items for discussion and decision: Item 8 of the provisional agenda, 3 September 2013, Pages 8-10:
http://unstats.un.org/unsd/accsub/2013docs-22nd/SA-2013-12-Add1-Health-WHO.pdf

5. Slide presentation: ICD Revision: Where are we? Bedirhan Üstün, World Health Organization Classifications, Terminologies, Standards, ICD Revision: Quality Safety Meeting 2013, September 9-10, 2013, Slides 29-35:
http://www.slideshare.net/ustunb/icd-2013-qs-tag-260276686

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