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

Discussion in 'General ME/CFS News' started by Dx Revision Watch, May 4, 2018.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Action for M.E.

    https://www.actionforme.org.uk/news/gp-system-updated-to-reflect-m.e.-as-neurological/

    GP system updated to reflect M.E. as neurological

    -----------

    NB: Just to clarify my position: I did not consider the Multisystem disorder parent Concept (which was retired from all 90 Children in January 2018) to be particularly unhelpful, per se.

    But that being left with

    Clinical finding (finding)
    > Disease (disorder)

    and no body system/aetiology parent was undesirable.

    If ICD-11 had progressed with its early discussions for a potential new chapter for Multisystem diseases, or for a Multisystem disorders linearization, it is possible that ME, CFS would have been a candidate for inclusion within that chapter or linearization [1][2].

    1 Aymé, Chalmers, Chute, Jakob (2010). ICD Revision: Discussion paper: Multisystem Disorders. http://bit.ly/2nnilKW
    PDF: https://dxrevisionwatch.files.wordp...-multisystem-diseases-discussion-document.pdf

    2 WHO ICD Revision Information Note 19: Multisystem Diseases Chapter in ICD, January 29, 2013


    Edited to add: Action for M.E. has amended its report.
     
    Last edited: Aug 2, 2018
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  2. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Some questions - and I realise I may have got the wrong end of the stick...

    1) Does this mean that everyone in the UK will have a summary record detailing all their current or previous diagnoses using SNOMED CT codes?

    2) If yes, can patients view it?

    3) And can things be added to it or deleted from it at the request of the patient if it is incomplete or has wrong info on?
     
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  3. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    "Each concept has at least one Fully Specified Name (FSN) intended to provide an unambiguous way to name a concept."

    For SNOMED CT, the "Fully specified name (FSN)" or "Preferred name" is "Chronic fatigue syndrome". BME, ME and Myalgic encephalopathy (the latter in the UK Edition only) are identified as "Acceptable" terms.

    If you go to this link in the UK Edition (not yet updated to reflect the changes in the July 2018 release):

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


    and click on the "Details" tab. The FSN, "Preferred term" and "Acceptable" terms are set out under:

    National Health Service realm language reference set (clinical part)


    Re: patients with legacy Read Codes (CTv3) now that SNOMED CT has replaced the Read Code system and has become the mandatory system for use in NHS Primary Care.

    Presentation:


    https://confluence.ihtsdotools.org/...rsion=1&modificationDate=1509382743000&api=v2

    From Read codes to SNOMED CT
    SNOMED CT in Primary Care


    Slide #14

    Transition to SNOMED CT – dual coding

    • Mapped Read coded Data has an associated SNOMED CT code
    • New data in SNOMED CT will have an equivalent Read code where these exist (SNOMED CTsubset )
    • Dual coded, existing searches, reports, templates, protocols will continue to work – until content only in SNOMED CT is required

    Historical data has SNOMED CT and Read codes - Dual coding continues – planned till April 2020
    Solutions Development and Testing - April 2018 onwards – systems utilise SNOMED CT

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

    For expanded information on transitioning, see also:

    NHS Digital

    SNOMED CT Fact Sheet June 2018

    Dual Coding and the GP Subsets


    https://hscic.kahootz.com/gf2.ti/f/762498/28807269/PDF/-/Dual_Coding_FACT_Sheet.pdf
     
    Last edited: Aug 2, 2018
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  4. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    https://confluence.ihtsdotools.org/display/DOCSTART/5.+SNOMED+CT+Logical+Model

    SNOMED CT Starter Guide

    5. SNOMED CT Logical Model

    (...)

    Concepts
    Every concept represents a unique clinical meaning, which is referenced using a unique, numeric and machine-readable SNOMED CT identifier. The identifier provides an unambiguous unique reference to each concept and does not have any ascribed human interpretable meaning.
    • Other types of components also have unique identifiers – however, the concept identifier has a specific role as the code used to represent the meaning in clinical records, documents, messages and data.

    Descriptions

    A set of textual descriptions are assigned to every concept. These provide the human readable form of a concept. Two types of description are used to represent every concept - Fully Specified Name (FSN) and Synonym.

    The FSN represents a unique, unambiguous description of a concept's meaning. The FSN is not intended to be displayed in clinical records, but is instead used to disambiguate the distinct meaning of each different concept. This is particularly useful when different concepts are referred to by the same commonly used word or phrase. Each concept can have only one FSN in each language or dialect.

    A synonym represents a term that can be used to display or select a concept. A concept may have several synonyms. This allows users of SNOMED CT to use the terms they prefer to refer to a specific clinical meaning. Concepts can have multiple synonyms, and the associated terms are not necessarily unique – thus two concepts can have the same synonym term. Interpretation of a synonymous term therefore depends on the concept identifier.

    Each concept has one synonym which is marked as |preferred | in a given language, dialect, or context of use. This is known as the "preferred term" and is a word or phrase commonly used by clinicians to name that concept. In each language, dialect or context of use, one and only one synonym can be marked as | preferred |. Any number of other synonyms that are valid in a language, dialect or context of use can be marked as | acceptable |.

    [Diagram]
     
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  5. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The Summary Care Record does not detail all previous diagnoses. Patients have a right to access it, to request a note to be added to correct errors, to request additional information to be added. I think also, you can request that specific information is omitted when using the SCR for sharing with other health care settings. Unless you have opted out, hospitals and in some cases, pharmacists, can pull up the SCR.


    https://digital.nhs.uk/services/summary-care-records-scr

    Summary Care Records (SCR)

    -----------

    It's worth checking for errors. I was referred to a rapid assessment eye clinic in 2015 with a posterior vitreous detachment. A summary care record was generated for me to take to the hospital, with a hand written referral note. The SCR listed a number of historical diagnoses but also contained an error about a clinic referral, which I asked to be corrected in the record.

     
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  6. anniekim

    anniekim Senior Member (Voting Rights)

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    Thank you @DxRevision watch for your detailed response. I appreciate as there is not yet universal acceptance of a single criteria set that distinguishes ME from CFS, my wish that ME and CFS were not treated as the synonyms in the updated SNOMED isn’t going to happen yet. Likewise I know the ICD 10 links CFS back to ME in the tabular list. (I believe ICD CM does keep CFS and ME separate).

    However, I still think CFS criteria, Fukuda, NHS NICE, etc are too broad ( IOM SEID has many problems too) and, as said above, though many with diagnosed with CFS will meet ME criteria, crucially not all. Therefore, there still needs to be a universally agreed ME criteria set and why I support ME ICC.
     
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  7. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Thanks, I didn't know that. Very useful!
     
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  8. Inara

    Inara Senior Member (Voting Rights)

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    Congratulations, Suzy, for this huge success! Thank you so much, and thank you to all who contributed!

    Let me be so bold as to link to a thread (members only):
    https://www.s4me.info/threads/looking-for-members-re-watch-icd.5199/#post-93643

    Suzy's work is so important, and as we can see it can be really worth it. It would be valuable if we continued it.
    (There seem to be Action for ME and Forward-ME who watch ICD, too, but to be honest I don't trust them completely having past events in mind.)
     
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  9. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Attached Files:

    Last edited: Aug 2, 2018
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  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Thanks for opening that thread, Inara.

    You could mention that I shall be keeping my Dx Revision Watch site online for the foreseeable future (plus the old ME agenda site).

    I have a number of posts to compile for my site before I step back in a couple of weeks. When they are published, the most recent 10 or so posts (those dating from July 21, 2018 onwards) will bring readers up to speed on the status of SNOMED CT and ICD-11 developments.
     
    Last edited: Aug 2, 2018
  11. Daisymay

    Daisymay Senior Member (Voting Rights)

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    You've done amazing work for PWME over all these years, thanks so much. It must have taken a heck of a lot of time and effort.
     
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  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The U.S. "clinical modification" of ICD-10 (ICD-10-CM) has included Chronic fatigue syndrome (as "Chronic fatigue syndrome NOS") in the Tabular List.

    Although it does separate CFS from PVFS and BME, it classifies CFS under the vague Symptoms, signs chapter, as an inclusion under

    R53.82 Chronic fatigue, unspecified
    .

    That is not a good place to be for the thousands of U.S. patients with a diagnosis of CFS. Some U.S. advocates and clinicians have been working for several years to have CFS restored to the G93.3 code, but with two or three separate subcodes for PVFS; BME and CFS.

    If I were a U.S. patient I would not want to be coded in under R53.82. It would be interesting to know, now that the U.S. has been using ICD-10-CM since October 2015, just how many patients are actually being coded with the G93.3 code or having an existing CFS diagnosis changed to the G93.3 PVFS; ME code.

    I quite agree. Obtaining separate codes in both SNOMED CT and ICD-11 will be a task for the future.

    In our joint proposal for ICD-11, submitted in March 2017, Mary Dimmock and I had requested separate codes for ME and CFS, with PVFS under the Synonyms list for ME. But ICD-11 has the facility for including disorder and disease description/characterization texts.
     
    Last edited: Aug 2, 2018
  13. anniekim

    anniekim Senior Member (Voting Rights)

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    Thank you @DxRevision watch for your further helpful reply. Although I long for a universally accepted ME diagnostic criteria, i hope my comments did not suggest I am not very grateful for your tireless work over the years and the positive things you have achieved for this community. Thank you.
     
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  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Not at all, anniekim, we share the same goals, and thank you for your kind words.
     
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  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Last edited: Aug 2, 2018
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sorry to keep asking similar questions but; with the UKs classification (WHO) of ME divided into mild, moderate and severe (presumably they do the same for CFS?), how is this reflected in SNOMED?
     
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  17. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Another couple of thoughts please @Dx Revision Watch ?

    Should we all try to check our Summary Care Records with our GP surgery to see how we PwME have been classified?

    and, at some point in the future, would this mean that the NHS would be able to provide a more accurate update of how many patients have M.E. in England?
    (Wales, Scotland, N.I, whole UK - sorry it gets very confusing when certain medical matters are devolved throughout the union, and others are not)

    Apologies if this is naive questioning, brain is not having a good week, I’m afraid. Thank you for all your hard work on these classifications- in the old days it would have been something I would have enjoyed, these days, it is far too complicated
     
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  18. Inara

    Inara Senior Member (Voting Rights)

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    I don't understand this. Sorry, could you explain?
     
  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    If you are discussing coding and classification issues on other forums or social media platforms, like Facebook or Twitter, by all means repost the the timeline graphic or the link to the graphic and other links to my reports.
     
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  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I can't give a quick answer to this as I am a bit confused by your question:

    The version of ICD-10 that is currently mandated for use across the NHS is the Version for 2015:

    http://apps.who.int/classifications/icd10/browse/2015/en#/

    NHS Digital is currently considering whether to adopt the Version for 2016:

    http://apps.who.int/classifications/icd10/browse/2016/en#/

    or remain on the Version for 2015 until the NHS has prepared for transition from ICD-10 to ICD-11 (which it cannot do, in any case, before 2022 but will likely need longer that this to prepare for migration).


    None of the versions of the WHO's ICD-10 that I am aware of include severity specifiers under the G93.3 code for Mild; Moderate; and Severe.

    So I'm not sure which classification you are referring to where you say, "with the UKs classification (WHO) of ME divided into mild, moderate and severe (presumably they do the same for CFS?), how is this reflected in SNOMED?"


    Do you mean that the old Read Code (CTV2 and CTV3) primary care terminology system (which is now retired) had three severity specifiers?


    For SNOMED CT, the lead term (what SNOMED calls the "Fully specified name" and "Preferred term") is Chronic fatigue syndrome.

    There are a number of designated "Acceptable" additional terms under Synonyms, which include Benign myalgic encephalomyelitis; Myalgic encephalomyelitis; and ME - Myalgic encephalomyelitis which you can see below. These Synonyms terms are also searchable via the search engine.


    [​IMG]


    (As you see the International Edition above has no Severities.)


    According to SNOMED CT user guidelines:

    "A synonym represents a term that can be used to display or select a concept. A concept may have several synonyms. This allows users of SNOMED CT to use the terms they prefer to refer to a specific clinical meaning."


    Note that SNOMED CT will be embedded into whatever EMR system a health care setting is using and that the SNOMED terminology system may be running in the background, as it were.

    So the practitioner enters a machine readable preferred term into the patient's record system and the SNOMED CT Concept term and SNOMED CT code (or SCTID) is automatically generated (and if required, generates the equivalent ICD-10 code via the SNOMED CT to ICD-10 cross map).

    SNOMED CT's CFS and its Synonym terms are already cross mapped to G93.3 in all Editions and this was the case when CFS sat under the parent "Multisystem disorder." So the cross map code has not changed.


    The International Edition and the National Editions that are displayed on the SNOMED CT browser platform, don't have Severity specifier options as Children terms under CFS.

    It is only the UK Edition that has Children terms under CFS:

    Below is a composite screenshot from the UK Edition showing the Classification Map code (SNOMED CT to ICD-10) and the three UK specific Severity options:


    [​IMG]

    These are marked with the Union flag to indicate that these three Children severity options are exclusive to the UK Edition. You will see flags against terms in other National Editions which indicate that those terms that are exclusive to those countries.

    The UK Edition also includes two exclusive additional terms, under Synonyms:


    Myalgic encephalitis
    Myalgic encephalopathy


    One of the tasks I have said I would do before I retire in two or three weeks' time, is to establish from NHS Digital in what year the three severity options for the SNOMED CT UK Edition were added; who requested their addition; whether they are optional; and by what means practitioners determine which of these severities to specify - if they do use them.

    I don't know*, but I suspect these three severities are a legacy from the Read Code (CTV3) primary care terminology system because SNOMED CT absorbed the Read Code terms and now replaces the Read Code system (though there will be a transition period of dual Read/SNOMED CT coding, as posted in earlier posts).

    If this does not answer your question or if you are aware of a WHO ICD-10 derived subset of terms that is used in the NHS, that includes severity options for CFS, please let me know.

    Suzy

    *See next post for expansion on this.
     
    Last edited: Aug 5, 2018
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