In May 2019, the World Health Assembly (WHO) adopted ICD-11 for implementation by member states from January 01, 2022.
In early 2019, the Australian Institute of Health and Welfare (AIHA) undertook a national consultation regarding ICD-11 to inform decisions on whether, when and how to implement ICD-11 in Australia.
The report of the AIHA was released on March 12, 2020:
In my report for the December edition of the ME Global Chronicle, I set out how the G93.3 terms:
Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Chronic fatigue syndrome
are classified in the World Health Organization’s international version of ICD-10 and how these terms have been classified for ICD-11.
I have an update on ICD-10 and it’s good news!
In January, the WHO released ICD-10 Version: 2019. With ICD-11 on the horizon, this release will be the final update for the WHO’s international version of ICD-10, apart from corrections and exceptional additions.
In March 2016, a representative from the Canadian Institute for Health Information submitted a request and supporting rationale to the ICD-10 Update and Revision Committee (URC) for removal of the prefix “Benign” from “Benign myalgic encephalomyelitis”.
This request for a change was approved by the URC in September 2016 for implementation in the next release.
For ICD-10 Version: 2019, the G93.3 Tabular List inclusion term is now Myalgic encephalomyelitis.
(The term, “Benign myalgic encephalomyelitis” has been retained as an Index term.)
Note that for ICD-10, Chronic fatigue syndrome is not included in the Tabular List but is included in Volume 3: Index, where it is coded to the G93.3 Postviral fatigue syndrome concept title term.
For ICD-11, the WHO has retained Postviral fatigue syndrome as the concept title term in Chapter 08: Diseases of the nervous system under parent: Other disorders of the nervous system. The new code for ICD-11 is: 8E49.
Benign myalgic encephalomyelitis and Chronic fatigue syndrome are both specified as inclusion terms under Postviral fatigue syndrome in ICD-11’s equivalent to the Tabular List and take the 8E49 code. A number of historical and alternative terms are retained as index terms and all 14 index terms are coded to 8E49.
This is how the G93.3 terms are classified for ICD-10 Version: 2019:
The WHO expects Member States to be using the most recent release of ICD-10. But countries will implement the ICD-10 Version: 2019 release according to their own schedules.
NHS England and ICD-10:
NHS England currently uses ICD-10 Version: 2016. I have contacted NHS Digital’s classifications lead to establish whether NHS Digital intends to implement Version: 2019 or may be considering skipping the new release in preference to implementing ICD-11, at some point in the future.
If there is no mechanism for incorporating selected changes in a new release into earlier versions, NHS England might not be able to absorb this change into the version it is using.
Will this change be absorbed automatically for ICD-11?
This revision for the final release of ICD-10 sets a precedent for the national modifications of ICD-10, for example, the U.S. ICD-10-CM and Canadian ICD-10-CA, but also for ICD-11.
Proposals submitted in March 2017 by Chapman & Dimmock, and by the IACFS/ME for removing “Benign” from “Benign myalgic encephalomyelitis” were rejected by the WHO in early 2019.
In February, I submitted a new proposal for removal of the “Benign” prefix for ICD-11 citing the URC’s 2016 decision and the implementation of that decision for the final release of ICD-10.
Next month, the World Health Organization (WHO) intends to present a stable version of ICD-11 to the 72nd World Health Assembly for member state endorsement.
If adopted, endorsement would not come into effect until 1 January 2022.
After that date, member states can begin reporting data using the ICD-11 code sets when their countries have prepared their health systems for transition and implemented the new edition.
There is no mandatory date by which member states must migrate to the new edition and for a period of time, data will be collected and aggregated using both ICD-10 and ICD-11. It’s anticipated that even the earliest implementers will take several years to prepare their countries for transition.
Update and revision
Once endorsed, ICD-11 will be subject to an annual update and revision process, as ICD-10 has been.
Minor changes to content can be considered for incorporation on an annual basis. Major changes would be considered for incorporation on a 5 yearly update cycle.
Responsibility for reviewing and processing proposals now lies with the Medical Scientific Advisory Committee (MSAC) and the Classifications and Statistics Advisory Committee (CSAC), which takes over from the ICD-10 Update and Revision Committee (URC). These committees are working through a backlog of proposals.
The ICD-11 Proposal Mechanism platform will remain online and open to stakeholders for new comments and new submissions for changes, additions and improvements. Submissions for changes will also be received from member states via the WHO-FIC Network.
[See ICD-11 Reference Guide:3.8 Annex: ICD-11 Updating and Maintenance for information on the ICD-11 update and revision cycle and protocol for submission of new proposals.]
Recently processed proposals
Between February and April, this year, a number of proposals were processed.
These include proposals for Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome; proposals for Fatigue (was Malaise and fatigue in ICD-10); and proposals for Bodily distress disorder.
Proposals submitted before March 30, 2017 were supposed to have been reviewed before the end of 2017 for consideration for potential inclusion in the initial release of the ICD-11 MMS — but many of these weren’t processed, despite having met the submission deadline.
Proposals relating to Postviral fatigue syndrome and its inclusion terms were in any case put on hold while an evidence review was undertaken. This review was not completed until late 2018.
This batch of recently processed proposals includes proposals submitted by Suzy Chapman (since 2014); by Suzy Chapman and Mary Dimmock (March 2017); and by Lily Chu MD on behalf of the IACFS/ME (March 2017).
The proposal submitted by the WHO’s Dr Tarun Dua, in November 2017, to delete Postviral fatigue syndrome from the Diseases of the nervous system chapter and reclassify ME/CFS [sic] in the Symptoms, signs chapter as a child under Symptoms, signs or clinical findings of the musculoskeletal system was processed in November 2018.
The WHO rightly rejected Dr Dua’s proposal, in a decision supported by the MSAC and CSAC Committees.
Status of processed proposals at April 15, 2019:
In order to access the ICD-11 Proposal Mechanism registration with the platform is required and the platform is clunky to navigate.
For ease of access, I have created a table which sets out the outcome of these processed proposals for Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome; Fatigue; and Bodily distress disorder.
(If you already have v1 or v2 of this document, please replace with v3 below, as this document has been updated to include the approval of an exclusion for PVFS under Fatigue.)
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.
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.
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.
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
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.
(Key links from this post are also available on the ICD-11 2018 tab page.)
After 11 years in development and four extensions to the timeline, the World Health Organization (WHO) finally released a version of ICD-11 on June 18th.
Advanced preview
The WHO is presenting this June release as an “advance preview” to enable countries to start planning for implementation, prepare national translations and begin training health professionals.
ICD-11 MMS is scheduled for presentation at the World Health Assembly (WHA) in May 2019 for adoption by member states, but WHA endorsement won’t come into effect until January 1, 2022. After that date, member states can begin using the new edition for data reporting — if they are ready.
The WHO has bought itself a further three and half years in which to complete the preparation of implementation and support materials and finalize companion publications and other derivatives.
Dr Christopher Chute, chair of ICD-11’s Medical and Scientific Advisory Committee (MSAC), predicts that early implementers may require around five years to prepare their countries’ health systems for transition. Member states using a “clinical modification” of ICD are likely to take longer to develop, test and roll out a country specific adaptation.
There is no mandatory implementation date — member states will migrate to ICD-11 at their own pace and according to their countries’ specific timelines, requirements and resources.
Global adoption will likely be a patchy and prolonged process and for a period of time, WHO will be accepting data recorded using both ICD-10 and the new ICD-11 code sets.
No countries have announced implementation schedules. NHS Digital says:
“…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.”
In the meantime, the mandatory classification and terminology systems for use in the NHS are ICD-10* and SNOMED CT UK Edition**.
*NHS currently mandating ICD-10 Version: 2015.
**Read Codes (CTV-2 and CTV-3) are retired. SNOMED CT became the mandatory terminology system for use in NHS primary care in April 2018. Secondary Care, Acute Care, Mental Health, Community systems, Dentistry and other systems used in the direct management of care of an individual are scheduled to adopt SNOMED CT as the mandatory clinical terminology before 1 April 2020.
The orange ICD-11 Beta drafting platform is renamed to the “ICD-11 Maintenance Platform” and will remain in the public domain as a “work in progress” between stable releases.
The content on the orange platform will change as the substantial backlog of earlier proposals and new proposals submitted since the June 2018 release are processed.
An approved proposal for an addition or other change won’t immediately be reflected in the released version of the ICD-11 MMS but carried forward for eventual incorporation into a later release, according to the update cycle for that particular class of change.
There is a current backlog of over 1000 proposals waiting to be processed. New comments and proposals will continue to be accepted (see Annex 3.7 of the Reference Guide for maintenance and update schedules and guidance on submitting new proposals).
(If you were registered with the Beta drafting platform for access to the Comments function and Proposals Mechanism your account will work for the Maintenance Platform and you will be able to access historical comments and proposals.)
The maintenance and update of ICD-11 will be advised by the Classifications and Statistics Advisory Committee (CSAC); the Medical and Scientific Advisory Committee (MSAC); the Mortality Reference Group; the Morbidity Reference Group; and the Functioning and Disability Reference Group.
It is currently unclear in which year the first update cycle is anticipated to start, i.e., whether the next stable version would be released in January 2020, or in a later year.
The ICD Revision Topic Advisory Groups and sub working groups ceased operations in October 2016 and the Joint Task Force is expected to be stood down later this year.
The ICD-11 Maintenance Platform displays both the Foundation Component and the combined Mortality and Morbidity Statistics linearization:
This platform currently displays only the MMS Linearization codes, not the Foundation Component which contains all the ICD entities. As released in June 2018, the content is planned to remain stable until January 2019, in preparation for presentation at the May 2019 World Health Assembly.
There is a coding tool here:
ICD-11 Coding Tool Mortality and Morbidity Statistics (MMS) 2018:
(At the time of publication, there is no PDF version of the Reference Guide only an html version.)
What hasn’t been released yet?
Not all disorder “Descriptions” texts and other “Content Model” parameters have been populated and the full ICD-11 implementation package isn’t completed.
An updated ICD Revision information page states: “A suite of tools and functionality facilitate implementation and use of ICD-11.” But not all the tools and other materials listed under the Implementation Support tab are currently available.
The list also mentions “Specialty versions” but none of these are available; for example, the ICD-11 Clinical descriptions and diagnostic guidelines for Mental and Behavioural Disorders (the equivalent to ICD-10’s “Blue Book”) hasn’t been released yet.
This companion publication provides expanded clinical descriptions, differential diagnoses, diagnostic guidelines and codes for the categories in Chapter 06: Mental, behavioural and neurodevelopmental disorders including: “Essential (Required) Features, Boundaries with Other Disorders and Normality, and Additional Features sections. Additional sections (e.g., Culture-Related Features).”
Practitioners who have signed up to the Global Clinical Practice Network have had the opportunity to review and comment on drafts of the full clinical description and diagnostic guideline texts but drafts have not been available for public stakeholder review.
It’s not known whether this specialty mental disorder publication is planned to be released later this year or if the content cannot be finalized until after the ICD-11 MMS code sets have been ratified, in May 2019.
ICD-11 PHC: the revision of the 1996 publication: Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version (aka “ICD-10 PHC”) has not been released, either.
Drafts of the full texts for the disorder descriptions, as currently proposed for the 27 mental disorders for inclusion in ICD-11 PHC, are not available for public stakeholder scrutiny. There is no publicly available timeline for the finalization and release of ICD-11 PHC nor is it clear whether any additional field trials are in progress or have been recommended. NB: This publication will not be mandatory for use by WHO member states and it does not override the ICD-10 and ICD-11 code sets.
Additional materials
Brief Report from the Director-General: World Health Organization, EXECUTIVE BOARD EB143/13, 143rd session April 9, 2018, Provisional agenda item 5.2: International Statistical Classification of Diseases and Related Health Problems: update on the eleventh revision: http://apps.who.int/gb/ebwha/pdf_files/EB143/B143_13-en.pdf
Presentation Slides: ICD 11th revision, Member State Information Session Geneva, May 14, 2018, Dr John Grove, Director, Department of Information, Evidence, and Research, WHO and Dr Robert Jakob, Team Lead, Classifications, Terminologies and Standards, WHO https://dxrevisionwatch.files.wordpress.com/2018/05/icd11.pdf
Audio file from WHO Press Conference: June 14, 2018, Release of ICD-11 – the 11th revision of the International Classification of Disease, Dr Shekhar Saxena, Director, Department for Mental Health and Substance Abuse, WHO, Dr Robert Jakob, Team Lead, Classifications, Terminologies and Standards, WHO
Mp3 audio file [39:25 min]:
Presentation by Dr Michael First: Differences Between ICD-11 Classification of Mental & Behavioural Disorders and DSM-5. Nasjonal kompetansetjeneste ROP, Published July 20, 2018 [32:38 mins]
The revision of ICD-10 and development of ICD-11 kicked off in April 2007. The original projected WHA adoption date was 2011/12 [1].
Then a shift to 2015, then to 2017.
WHO has just kicked the can further down the road to May 2018.
In July 2014, the World Health Organization (WHO) Office of the Assistant Director General, Health Systems and Innovation, posted a call for expressions of interest from suitable contractors to conduct an interim assessment of the 11th Revision for International Classification of Diseases (ICD).
External assessment was prompted by concerns raised by WHO Member States, UN Statistical Commission and other stakeholder organizations about the status of the revision and the utility of the ICD-11 product.
Last week, WHO quietly released a report on the status of the ICD revision process, its management and resources, the feasibility of meeting its goals and timelines, and its fitness for purpose.
The reviewers’ assessment and recommendations can be read here: External report
Read WHO’s initial response to the report’s findings and the actions ICD Revision proposes to take here: WHO Response to External Report
WHO says:
WHO welcomes the constructive messages of the Report of the ICD-11 Revision Review. WHO is initiating the second phase of the revision process, acting immediately on the Review’s recommendations.
A revised workplan will be formulated before the end of June and submitted for approval to the RSG-SEG. During 2015 the WHO secretariat will be strengthened in terms of project management, communication of progress and plans, documentation and transparency of decision-making and classification expertise, as recommended by the reviewers.
As I predicted, a further shift in the development timeline from WHA adoption in May 2017 to May 2018 is proposed, along with other measures.
References
1 Exhibit 1 WHO Letter August 2007
Letter Saxena, WHO, to Ritchie, IUPsyS (International Union for Psychological Science), August 2007
2 External Review ICD-11 (Consultancy Interim Assessment of 11th ICD Revision, January – March 2015)
3 WHO Response to External Review of ICD-11 (Initial WHO response to the report of the external review of the ICD-11 revision,Department of Health Statistics and Information Systems, May 12 2015)
dx revision watch 
