Updates on status of ICD-11 and changes to other classification and terminology systems

I'll also be keeping an eye on AHIMA (American Health Information Management Association) and coding industry sites for analysis of the potential impact of US withdrawal from WHO on the continued use of ICD-10-CM codes by providers, payers and patients (and for NCVHS's existing work towards eventual adoption or adaptation of ICD-11).

The content of ICD-10 is copyright* and the US is currently licensed by the WHO to adapt ICD-10 for its own use. All modifications to ICD-10 must conform to WHO's established ICD structure and conventions.

It's not yet known what the WHO's policies are for the continued use of ICD-10 content if a country ceases to be a WHO Member State. But if the US's pulling out of WHO comes to fruition, there may be implications for the continued use of ICD-10-CM for records, data collection, reimbursement and clinical purposes.

Additionally, the US uses the WHO's ICD-10 to code and classify mortality data from death certificates.


*FAQ Licensing ICD-10

https://cdn.who.int/media/docs/defa...licies/copyright/who-faq-licensing-icd-10.pdf
 
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https://twitter.com/user/status/1895751072821768527


Dx Revision Watch
@dxrevisionwatch
National Committee on Vital and Health Statistics (NCVHS) holds public meetings. The site has been been locked for at least 10 days. Next Full Committee Meeting was scheduled for March 18-19. No Agenda available and no indication of whether this meeting is going ahead:


Wayback capture: January 21, 2025: https://web.archive.org/web/20250121132232/https://ncvhs.hhs.gov/meetings/full-committee-meeting-30/



https://twitter.com/user/status/1895753992229306658



Dx Revision Watch
@dxrevisionwatch

NCHS/CMS hold twice yearly Coordination and Maintenance Committee Meetings to discuss proposed changes to ICD-10-CM Diagnosis Codes and to Procedure Codes. Next meeting was scheduled for March 18-19, 2025. No Federal Notice and this posted yesterday:
 
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Full NCVHS Committee Meetings often include an update and presentation from the NCVHS ICD-11 sub working group on progress with the development of a road map for US adoption of ICD-11 or a clinical modification of ICD-11. Unclear what the future of ICD coding will be if the US does withdraw from WHO membership.

Also unclear whether the twice yearly NCHS/CMS public meetings to discuss addition of new codes/changes to existing codes will be reinstated with no public participation in the Zoom meetings; with only a post meeting public comment period or whether the ICD-10 C & M Committee will be stood down.

I will continue to monitor for updates at: https://www.cdc.gov/nchs/icd/icd-10-maintenance/meetings.html
 
Update on status of March 18-19, 2025 ICD-10-CM Coordination and Maintenance Committee virtual public meeting:

As anticipated, the spring meeting has been cancelled.

https://www.cdc.gov/nchs/icd/icd-10-maintenance/meetings.html


March meeting update

CDC's National Center for Health Statistics will not hold a Spring Coordination and Maintenance (C&M) Committee Meeting. Currently, we plan to hold a C&M meeting in fall 2025.​

This change will not affect the ICD-10-CM code updates that were approved in 2024. Those updates will be implemented on October 1, 2025. Plans for the March 2025 ICD-10-CM Coordination and Maintenance Committee meeting are changing.

We will post additional information as it is available.

​
The deadline for submission of requests for topics for discussion at the fall 2025 meeting had been given as June 6 in last September's Topic Packet.

Procedure code requests to CMS at: https://mearis.cms.gov

Diagnosis code requests should be directed to NCHS at: nchsicd10cm@cdc.gov
 
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Update on request for changes to SNOMED CT UK Edition and International Edition:


Key points:

1 For SNOMED CT UK Edition, the conjoined terms: "ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome" and "Myalgic encephalomyelitis/chronic fatigue syndrome" have been added under Synonyms.

2 "Chronic fatigue syndrome" remains the "Fully Specified Name" and is designated a "Preferred" term.
"ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome" is also designated a "Preferred" term.

3 There is currently no change to SNOMED CT International Edition and Request #52225 has not been marked as completed or declined.


NHS England is the National Release Centre for the creation of, and delegated authority to license, SNOMED CT UK Edition and derivatives. This role is undertaken by NHS England's Technology and Information Standards service.

SNOMED CT UK Edition is the mandated terminology system for use at the point of care across NHS primary and secondary care settings, including dental care and mental health. (Some GP practices may still be using the now retired Read Code (CTv3) terminology codes while transitioning to SNOMED CT UK Edition and you may see a mixture of SNOMED CT and CTv3 codes in your patient record.)

Requests for changes that are specific to a national extension may be dealt with by a country's National Release Centre. Depending on the nature of the request, submissions for changes may be referred on to SNOMED International's Terminology Team for their input or for consideration for adding to the International Edition.

Once added to the International Edition, a successful request is then incorporated into all the national extensions unless a country's National Release Centre chooses not to include the change.


On 06/11/24 two requests for changes to SCTID: Concept: 52702003 | Chronic fatigue syndrome (disorder) | were submitted by an unidentified requester. You can review the submissions on the publicly viewable Request Archive. (The public part of the Submission Portal does not show the names of the individuals or agencies who have submitted requests but these would be available to those with a registration for access to the Portal, who are usually those who work within the NHS or service providers to the NHS):


https://isd.digital.nhs.uk/rsp-snomed/user/guest/request/view.jsf?request_id=52224

Request 52224:

On this occasion, the request does not appear to have been referred to SNOMED International.

The submitter had requested:

Brief summary of the request
Add new synonyms for ME/CFS with one as UK preferred term

Description of the addition or change
Please add the following descriptions to the concept:
52702003 |Chronic fatigue syndrome (disorder)|

Descriptions:
ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome
to add as Preferred synonym

And
Myalgic encephalomyelitis/chronic fatigue syndrome
to add as Acceptable synonym​


This request has now been considered and changes have been made to the February 2025 release of SNOMED CT UK Edition (Release: uk-edition v20250212):

https://termbrowser.nhs.uk/?perspec...gRefset=999001261000000100,999000691000001104


Screenshot showing addition of the conjoined terms:

"ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome"

and

"Myalgic encephalomyelitis/chronic fatigue syndrome"

under Synonyms terms for Concept: 52702003 Chronic fatigue syndrome (disorder).

(All terms under Synonyms to the Fully Specified Name and [hierarchical] "Children" terms continue to cross map to ICD-10's G93.3 Postviral fatigue syndrome and ICD-11's E849 Postviral fatigue syndrome and the "Disorder of nervous system" and "Chronic nervous system disorder" Parents remain.)


snomed-uk2-feb-25.png


Note that for the "National Health Service realm language reference set (clinical part)"

"Chronic fatigue syndrome (disorder)" remains designated as the Concept's "Fully Specified Name" but "ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome" is now included and also designated as a "Preferred" Synonym term.

(For SNOMED CT, the convention for including acronyms in the system is "acronym followed by space followed by hyphen followed by space followed by the term written out in full, hence:

"ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome" and not just the acronym "ME/CFS".

The WHO's ICD-11 has a similar convention but uses the format: ME - [myalgic encephalomyelitis].


https://termbrowser.nhs.uk/?perspec...gRefset=999001261000000100,999000691000001104

Select "Details" tab:


snomed-ct-uk-3.png






Update on Submission 52225 (also submitted on 06/11/24):

https://isd.digital.nhs.uk/rsp-snomed/user/guest/request/view.jsf?request_id=52225

Brief summary of the request
Ask SI [Ed: SNOMED International] to change FSN of 52702003 |Chronic fatigue syndrome (disorder)|

Description of the addition or change
Please ask SI to change the FSN of the concept:
52702003 |Chronic fatigue syndrome (disorder)|

To:
Myalgic encephalomyelitis/chronic fatigue syndrome (disorder)

Whilst FSNs should not have a forward slash, we feel this is necessary to represent to international terming used for this disorder. ​



Request 52225 is marked as having been referred on to SNOMED International's Terminology Team and remains under consideration.

Note that under SNOMED CT terminology and semantic conventions, Fully Specified Names (FSNs) should not usually include a forward slash [1]. It may also be problematic for the system to designate a conjoined term like "Myalgic encephalomyelitis/chronic fatigue syndrome (disorder)" as a Fully Specified Name where the terms also exist as separate entities within the terminology system.


I will keep an eye on any decision regarding Request 52225.

Please note that I have had no involvement in the submission, drafting and rationales for either of these requests, nor the one submitted in September 2024 by Hannah Bullock, requesting assignment of a unique code for the term, "ME Myalgic Encephalitis", which was declined.

(The term "Myalgic encephalitis" is already included under the list of "Acceptable" synonyms under "FSN Chronic fatigue syndrome (disorder)" in the UK Edition. It had been approved for addition to the UK Edition in May 2009 and is not included in the International Edition's list of synonyms terms.)

I do not know who had submitted requests 52224 and 52225 but given the submitter is evidently familiar with SNOMED CT terminology restrictions concerning the use of a forward slash within FSNs [1] and the format for acronyms within SNOMED CT, I think it likely that both these requests were submitted by someone working within the NHS or within Health Education England with a good knowledge of SNOMED CT.

I am not party to any ongoing discussions the submitter may be having with SNOMED International's Terminology Team or with the National Release Centre regarding the processing of Request 52225 or whether the Terminology Team may be consulting with any external advisers or with the WHO, with whom they liaise in order to work towards compatibility between ICD-10 and ICD-11.

1. SNOMED CT Conventions: Fully Specified Name:
https://confluence.ihtsdotools.org/display/DOCEG/Fully+Specified+Name
 
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InitialConditions said:
Does the NHS primarily use SNOMED or ICD, or both? I'm particularly interested in the electronic health record systems used in primary care.
Click to expand...


NHS England uses both but for different purposes.

SNOMED CT has been mandated for use in patients' electronic medical records at the point of contact in primary care since 2018, though some practices have been slower to implement than others.

This presentation may be of interest:

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:

coding-for-non-coders.png




NHS England is still mandating ICD-10 Version: 2016.

It has not migrated to Version: 2019 and may skip Version: 2019 (which can no longer be updated) in favour of transitioning directly to ICD-11, when preparations have been made.

In March 2023, a road map for adoption and implementation of ICD-11 was scheduled to be released by NHS Digital. To date, no road map has been issued and there is no indication of when NHS will be ready to roll out ICD-11. My guess is it will likely be at least another 4 years.

In NHS Scotland, some ICD-11 mental health disorder codes have already been adopted.

My own GP practice is still coding appointment and other medical notes using Read Code (CTv3) codes for diagnoses, blood test ordering, invitations for renal profile reviews, recording vaccinations etc. Every action taken by a GP or clinic nurse or admin is assigned a CTv3 code.

But diagnoses extracted from hospital outpatient clinic follow-up letters or hospital discharge forms are more likely to be entered into my medical record using SNOMED CT codes.
 
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My GP practice uses SystmOne for patient EMRs which is a clinical computer system produced by TPP. I have access to SystmOnline (the portal for patients) and can view my medical notes online or via the Airmid app and the CTv3 codes are all visible.

But some people I know whose GP practices use a different EMR package can't see the CTv3 or SNOMED CT codes in their online or app medical records.

SNOMED CT is embedded into some EMR systems and works in the background. If a GP, clinic nurse or practice admin types in a diagnosis (or a SNOMED CT "Preferred" or "Acceptable" synonym term for that diagnosis), it can be machine read and a SNOMED CT Concept code automatically generated.

There are cross maps between SNOMED CT, the (now retired) CTv3 terminology system and ICD-10, so cross mapped equivalent codes can be generated, too.

All terms under SNOMED CT's 52702003 | Chronic fatigue syndrome (disorder) are cross mapped to ICD-10 G93.3 and CTv3's Xa01F.

A search for "ME/CFS" in SNOMED CT UK Edition now returns "ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome".
 
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You can ask your practice to use any of the terms:

Iceland disease
Benign myalgic encephalomyelitis
Chronic fatigue syndrome
Myalgic encephalomyelitis syndrome
ME - Myalgic encephalomyelitis
Myalgic encephalomyelitis
CFS - Chronic fatigue syndrome
Chronic fatigue syndrome (disorder)
Myalgic encephalitis
Myalgic encephalopathy

and now

ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome

but they will all be assigned the same SNOMED CT Concept code: 52702003.

The three Severity Specifiers - Mild, Moderate or Severe Chronic fatigue syndrome that are listed under "Children" have been assigned unique codes. I think CTv3 also has three unique specifiers for severity.
 
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My adult son had received a diagnosis from an NHS paediatric consultant in mid 1999. Initially, he was given a tentative diagnosis of "Postviral fatigue". This was subsequently revised in clinic follow-up letters to ME/PVFS, ME/CFS, CFS, CFS/ME depending on which member of the clinic staff he had seen at his 6 monthly follow-ups.

At the time, the ICD-10 G93.3 code was available as was the Read Code equivalent to G93.3.

When he got access a year or so ago to the SystmOnline Airmid app, he discovered that his GP practice had coded his diagnosis in 1999 as "Postviral (asthenic) syndrome". This was a Read Code v2 term that sat under the Read code equivalent to the ICD-10 R codes, under Malaise and fatigue.

When we looked up the Read code that had been assigned to this diagnostic term, it wasn't the correct code for "Postviral (asthenic) syndrome" but a code for a broken bone in the arm!

One hopes that those tasked with coding in today's practices are better trained.
 
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https://twitter.com/user/status/1914252882431352988


Arthur
@unreal_arthur
@dxrevisionwatch
maybe this SNOMED data could be used? https://digital.nhs.uk/data-and-information/publications/statistical/mi-snomed-code-usage-in-primary-care/2023-24… My understanding is that it doesn’t show how many people are diagnosed, just the frequency GPs are using the codes. But it might show some interesting trends re POTS ME and Long Covid…

-----------------------------------------------------------------------------------------

Note the NHS Digital webpage says:

Summary

Current code usage data for SNOMED codes added to a GP patient record in England.

The following files show the number of times each listed SNOMED code was added to a GP patient record within the period 1 Aug to 31 July for the years available, aggregated at England level. The data is available in .txt and .xlsx formats.

Data does not show how many patients had each code added to their record. A patient could have one code added to their record multiple times throughout the year, therefore it is not possible to infer the number of patients with a particular code from this data or use the data to calculate disease prevalence.

Only valid SNOMED concepts are included and not all practices are included - please read the metadata prior to using this data.

Data prior to 2019 was originally submitted predominantly in READ V2 or CTV3. For the purposes of reporting these data have been mapped forward to their corresponding SNOMED codes. For further information on this please refer to the metadata file available from the SNOMED code usage 2011-12 to 2017-18 page below.

06/12/2023: The 2022-23 files have been updated due to further data being received. The metadata file has also been updated to reflect this.

17/10/2023: The files for 2018-19 to 2021-22 were updated. For more details on this, please refer to the individual publication pages for these files.



Bit scruffy, but I've collated the data for SNOMED CT UK edition Concept Codes for CFS, Post-COVID-19 Syndrome and POTS from the 2023-2024 spreadsheet:
frequency-2.png
 
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