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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 Guest 77, May 4, 2018.

  1. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    [U.S.]

    https://journal.ahima.org/ncvhs-recommends-government-actions-to-prepare-for-us-adoption-of-icd-11/

    NCVHS Recommends Government Actions to Prepare for US Adoption of ICD-11

    February 1, 2020 at 12:00 am

    report by AHIMA's Sue Bowman (senior director, coding policy and compliance) with overview of key NCVHS Recommendations for Secretary, HHS.

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

    NCVHS's letter of November 25, 2019 to Secretary, Department of Health and Human Services here:

    https://ncvhs.hhs.gov/wp-content/up...-a-Mandated-US-Health-Data-Standard-final.pdf
     
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  2. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    On February 5, 2020, Antonia Barke, representing the IASP Task Force, submitted a proposal for a change of primary parent chapter location for ICD-11's Complex regional pain syndrome.

    This term is currently primary parented under Focal or segmental autonomic disorders, under Disorders of autonomic nervous system in the Diseases of the nervous system chapter. It is secondary parented in the Symptoms, signs chapter, under the new Chronic primary pain block and also under Chronic postsurgical or post traumatic pain under the Chronic pain block.

    The proposal was that Complex regional pain syndrome and all its child entities should be primary parented under Chronic primary pain.

    This change of primary parent (if approved) would have entailed a change of chapter and a change of code, since the codes assigned to ICD-11 terms are based on their primary chapter location.

    WHO rejected this proposal on February 7.


    The proposal itself and its outcome is not relevant to us. But I wanted to highlight the text of the WHO's response (the Rejection note in the red box in the screenshot) which states:

    "...The ICD-11 codes are now frozen. Proposed changes to the classification that would result in a code change are not permitted. Changing the primary parent of this entity would result in this entity needing to have the code changed, as entities are assigned based on their primary location."

    purely as confirmation that proposed changes to the classification that would result in a code change or which would disrupt the existing code structure are not permitted.

    (Addition or deletion of Synonyms, Index Terms or Exclusions can be considered since this class of change does not impact on the existing code structure and could be incorporated during the annual update process.)


    For more information on changes that are not permitted, see: ICD-11 Reference Guide:

    3.8.7 Changes that cannot be done during the normal updating process

    https://icd.who.int/icd11refguide/e...one-during-the-normal-updating-process|c3-8-7



    Screenshot source: ICD-11 Orange Maintenance Platform, Proposal Mechanism:

    https://icd.who.int/dev11/proposals...lGroupId=7786c86f-4416-4632-a4fa-3e3cf577eeb1

    [​IMG]
     
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  3. Guest 77

    Guest 77 Senior Member (Voting Rights)

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  4. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    But there's more...

    For the ICD-10 release for 2019, the term "Benign" has been deprecated.

    The "Benign myalgic encephalomyelitis" term is now listing as an Index term.

    The Inclusion term under G93.3 Postviral fatigue syndrome is now specified as "Myalgic encephalomyelitis" !!!!!!!!!!

    This decision sets a precedent decision for ICD-11.

    On January 13, 2020, I posted the following comment on the ICD-11 Proposal Mechanism:

    https://icd.who.int/dev11/proposals...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a

    "Team3 WHO" has still not responded to my requests (March 05, 2019 and June 13, 2019) to provide the rationale for WHO's rejection of the recommendation for deprecation of the word "Benign" from "Benign myalgic encephalomyelitis."

    I am therefore requesting that the rationale for this decision is provided.

    It should be noted that the Australian ICD-10-AM has dropped the word "Benign" and lists "Myalgic encephalomyelitis" as the inclusion under G93.3 Postviral fatigue syndrome in the ICD-10-AM Tabular List.

    Suzy Chapman 2020-Jan-13 - 12:04 UTC


    Tomorrow, I will submit a new proposal for deprecation of the "Benign" prefix for ICD-11, citing earlier proposal rationales and this change for ICD-10, also the fact that the Australian ICD-10-AM has already dropped the term "Benign".

    If the update and revision committee for ICD-10 has been prepared to make this change for the final release for ICD-10, there is a very good chance that this change for the inclusion term can be carried forward and implemented for ICD-11.

    This is how ICD-10 Version: 2019 looks:

    https://icd.who.int/browse10/2019/en#/G93.3


    [​IMG]
     
    Last edited: Feb 8, 2020
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  5. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    This also sets a precedent decision for the various national modifications of ICD-10 (although Australia's ICD-10-AM had already deprecated the "Benign" prefix).
     
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  6. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    The update and revision process for ICD-10 used to be the responsibility of the WHO-FIC Update and Revision Committee (URC). It wasn't a public process and proposals for changes would be submitted by WHO Collaborating Centres.

    My understanding is that the ICD-11 Classifications and Statistics Advisory Commitee (CSAC) has taken over the role that the URC had. It may be the case that one of the Collaborating Centres had submitted for this change for the final release of ICD-10 or it may have been proposed by the CSAC.

    Mary Dimmock and I had submitted for the deprecation of the "Benign" term in our multi-part proposal of March 27, 2017 but this had been rejected. Since then I've requested the rationale for rejection (which they haven't provided) and also submitted further evidence in support of the original request.

    It may be the case that WHO/CSAC/MSAC will submit a proposal for this change to ICD-10 to be incorporated into ICD-11, themselves.

    But I shall in any case submit a new proposal tomorrow. I can see no justification now for WHO/CSAC not approving the deprecation of "Benign" for ICD-11.
     
  7. Guest 77

    Guest 77 Senior Member (Voting Rights)

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  8. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    PDF version: https://dxrevisionwatch.files.wordpress.com/2020/02/new-proposal-for-icd-11-remove-benign-1.pdf

    or Bitly Custom Link: http://bit.ly/BenignICD11


    ICD-11 Orange Maintenance Platform: Proposal Mechanism


    (Registration with the platform is required to access Proposals)

    https://icd.who.int/dev11/proposals...lGroupId=d9877203-d434-42b2-9f5f-cd649d259aec


    2020-Feb-09 - 17:49 #298U Originator: Suzy Chapman

    Edit to text and to insert additional reference. Proposal now date stamped:

    2020-Feb-14 - 09:26 #298U


    Complex Hierarchical Changes Proposal

    Proposal Status:
    Submitted

    Postviral fatigue syndrome


    Detailed Explanation of the Proposal


    Declarations: The author of this submission has no affiliations and no conflicts of interest to declare.


    The following changes to the specified Inclusions under 8E49 Postviral fatigue syndrome are proposed:

    Remove inclusion term: Benign myalgic encephalomyelitis
    Add inclusion term: Myalgic encephalomyelitis

    It is recommended to retain the entity "Benign myalgic encephalomyelitis" under the Synonyms/Index Terms list for continuity with ICD-10 and the various national modifications of ICD-10.


    There is an exclusion for "Benign myalgic encephalomyelitis (8E49)" under 6C20 Bodily distress disorder (Foundation Id: http://id.who.int/icd/entity/767044268)

    There is an exclusion for "(Benign) myalgic encephalomyelitis (8E49)" under MG22 Fatigue (Foundation Id: http://id.who.int/icd/entity/1109546957)

    Please revise both of these exclusions under 6C20 and MG22 to Myalgic encephalomyelitis (8E49).


    Rationale

    The Rationale for this proposal is being appended to the Detailed Explanation for improved accessibility for a stakeholder patient group, some of whom may experience cognitive impairment and visual problems when viewing unformatted plain texts on computers and other devices.

    1 Consistency with ICD-10: A new release of ICD-10 (ICD-10 Version: 2019) has recently been published on the ICD-10 Browser platform [1]. Under the G93.3 Postviral fatigue syndrome concept title, the inclusion term "Benign myalgic encephalomyelitis" has been revised to "Myalgic encephalomyelitis". This decision establishes a precedent for ICD-11. For consistency and continuity with ICD-10, the prefix "Benign" should also be deprecated for the 8E49 specified inclusion term. (It is recommended to retain the entity "Benign myalgic encephalomyelitis" under the Synonyms/Index Terms list for backward compatibility and comparability over time.)

    It has come to my attention that a proposal for revision of "Benign myalgic encephalomyelitis" to "Myalgic encephalomyelitis" for ICD-10 was submitted to the URC (Update and Revision Committee) on March 16, 2016 by Ms Kristy Mabon, a Classification Specialist at Canadian Institute for Health.

    Proposal ID: 2211: Accepted

    Screenshot: http://bit.ly/2SCM3cA

    The proposal is marked: URC (Sept 27, 2016): this proposal was accepted in 2016. Implementation date: 1/2018.

    Since a proposal for deletion of the prefix "Benign" had already been accepted by the URC in 2016, for implementation in ICD-10 from 1/2018, there appears to be no basis for the same proposal submitted by Chapman and Dimmock (March 31, 2017 as part of a multi-part submission for ICD-11) being rejected outright in March 2019 (Team3 WHO 2019-Mar-04 - 22:58 UTC). Several requests for the rationale for the decision to reject this proposal have met with no response [14].

    As URC proposal ID: 2211 has now been incorporated into ICD-10 Version: 2019, this further supports its migration to ICD-11.

    2 Deprecation of the prefix "Benign" by international health agencies: NHS England, NHS Digital National Clinical Coding Standards, NICE (National Institute for Health and Care Excellence), CDC (Centers for Disease Control and Prevention), U.S. National Academy of Medicine, DIMDI (Deutsche Institut für Medizinische Dokumentation und Information) and the Australian Consortium for Classification Development all use the term "Myalgic encephalomyelitis" in preference to "Benign myalgic encephalomyelitis" [2-5]. The German ICD-10-GM and Australian ICD-10-AM have already deprecated the "Benign" prefix in the Tabular Lists of their national modifications [6-7].

    3 Disease burden and impact on functional status: The disease is associated with substantial impairment in functioning. Patients have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, multiple sclerosis and end-stage renal disease (Jason and Richman, 2008). Papers discussing quality of life and impact on functional status [8-11].

    The 2015 Report of the U.S. National Academy of Medicine concluded that the disease is a "serious, chronic, complex, and multisystem disease" that causes neurological, cognitive, immunological, autonomic, and energy metabolism impairment. The Report also noted that the disease can result in prolonged and significant disability with impairment in ability to engage in educational, occupational, social and personal activities; that there is a considerable economic burden associated with these conditions, with many patients unable to continue in employment; that 25% of patients are bed- or house-bound during their illness and that severely affected patients will require very high levels of personal care and assistance [5].

    Some severely affected patients may develop weakness of the muscles of the mouth and throat resulting in difficulty speaking and swallowing food, fluids and medications. Some cases necessitate administration of fluids and nutrition via abdominal PEG tubes (percutaneous endoscopic gastrostomy).

    4 Mortality: For at least the last 17 years, researchers have published studies reporting an increased risk of death due to cancer, cardiac disease, and suicide. On July 11, 2009, autopsy evidence was presented at a Royal Society of Medicine meeting by Dr Abhijit Chaudhuri, Essex Centre for Neurosciences, where slides of inflammation of dorsal root ganglia in three patients with myalgic encephalomyelitis were discussed [12]. A disease specific post-mortem brain and tissue bank for the study of myalgic encephalomyelitis and chronic fatigue syndrome was proposed for the UK [13].

    5 Deaths registered in England and Wales, 2001 to 2016, Freedom of Information Request: Office of National Statistics, Information request release date: 18 May 2018, Reference number: 008461. Mentions of postviral fatigue syndrome (benign myalgic encephalomyelitis), in deaths registered in England and Wales, 2001 to 2016:

    https://www.ons.gov.uk/peoplepopula...isdeathsregisteredinenglandandwales2001to2016

    Summary of FOI request: This table presents the number of deaths that mentioned postviral fatigue syndrome (benign myalgic encephalomyelitis) on the death certificate, either as the underlying cause of death or as a contributory factor. Figures are based on deaths registered in England and Wales between 2001 and 2016:

    https://www.ons.gov.uk/file?uri=/pe...redinenglandandwales2001to2016/finaltable.xls

    6 Stakeholder support for deprecation of the "Benign" prefix: In a proposal submitted by Chapman & Dimmock (March 27, 2017; minor edit March 31, 2017), the authors had recommended, inter alia, to delete the prefix "Benign" from the "Benign myalgic encephalomyelitis" inclusion term and replace the entity with "Myalgic encephalomyelitis".

    The authors argued that given the high burden of morbidity associated with the disease and recorded mortality, there was no justification for retaining the designation "Benign" for ICD-11. Around 40 international patient organisations submitted responses in support of deprecation of the "Benign" prefix [14].

    In sum: it fails to reflect the high burden of morbidity or acknowledge recorded mortalities; it does a disservice to patients and to families caring for adults, children and young people and to the families of those who have died as result of the disease, some whilst still in their 20s and 30s.

    References

    1 ICD-10 Version: 2019, Accessed February 09, 2020: https://icd.who.int/browse10/2019/en#/G93.3

    2 NHS Digital National Clinical Coding Standards ICD-10 5th Edition (2019) p84: https://hscic.kahootz.com/gf2.ti/f/...oding_Standards_ICD10_reference_book_2019.pdf

    3 NICE CG53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management Clinical guideline [CG53] Published date: August 2007: https://www.nice.org.uk/guidance/cg53/chapter/1-guidance

    Revision of NICE CG53: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management In development [GID-NG10091]: https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/

    4 CDC (Centers for Disease Control and Prevention): https://www.cdc.gov/me-cfs/index.html

    5 National Academy of Medicine: http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

    6 ICD-10-GM, DIMDI: https://www.dimdi.de/static/de/klas...m/kode-suche/htmlgm2019/block-g90-g99.htm#G93

    7 ICD-10-AM, Australian Consortium for Classification Development: https://www.ihpa.gov.au/what-we-do/icd-10-am-achi-acs-current-edition

    8 Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L (2015). The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

    9 Nacul LC, Lacerda EM, Campion P, Pheby D, de L Drachler M, Leite JC et al. The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. BMC Public Health 2011 11:402: https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-11-402

    10 Eliana M. Lacerda Kingdon, C.C., Bowman, E.W., Curran, H. et al. Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls. PharmacoEconomics Open (2018) 2: 381: https://link.springer.com/article/10.1007/s41669-018-0071-6

    11 Dimmock ME, Mirin AA, Jason LA (2016). Estimating the disease burden of ME/CFS in the United States and its relation to research funding. J Med Therap 1: doi:10.15761/JMT.1000102: https://oatext.com/Estimating-the-d...ates-and-its-relation-to-research-funding.php

    12 O’Donovan D, Harrower T, Cader S, Findley L, Shepherd C, Chaudhuri A. Pathology of Chronic Fatigue Syndrome: Pilot Study of four autopsy cases. International Science Symposium 3-4 – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Queensland, Australia: Population Health and Neuroimmunology Unit, Bond University; 2010.

    13 Nacul L, O’Donovan DG, Lacerda EM, et al. Considerations in establishing a post-mortem brain and tissue bank for the study of myalgic encephalomyelitis/chronic fatigue syndrome: a proposed protocol. BMC Research Notes. 2014;7:370: http://bmcresnotes.biomedcentral.com/articles/10.1186/1756-0500-7-370

    14 Proposal Mechanism, Chapman & Dimmock (March 31, 2017): https://icd.who.int/dev11/proposals...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a

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

    Edited to include additional text and insertion of an additional reference.

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

    NB: The latest edition of the National Clinical Coding Standards ICD-10 5th Edition Reference Book 2020 (for implementation April 1st 2020) in reference 2 is now available for download from the NHS Digital Delen Resource pages:

    https://hscic.kahootz.com/connect.ti/t_c_home/view?objectId=16878800

    https://hscic.kahootz.com/gf2.ti/f/762498/63579813.1/PDF/-/NCCSICD20206.pdf

    As with earlier versions of this ICD-10 Coding Standards, it includes the following guidance:

    [​IMG]
     
    Last edited: Feb 14, 2020
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  9. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Thanks for highlighting this change, Suzy. I'll follow up on ICD-10-CM.
     
  10. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    ME Research UK has published a brief report on classification and coding for ICD-11.

    Note that the report, which was posted on January 22, doesn't mention that exclusions for the 8E49 terms under Bodily distress disorder have finally been obtained.

    Note also that this embedded link "PostViral Fatigue Syndrome (Block 93.3, ICD 10th revision, 2007)" points to ICD-10 Version: 2010 on the ICD-10 Browser platform. Since 2010, the following updated versions have been released on the Browser: 2014, 2015, 2016 (and in the last few days, the final ICD-10 release: 2019).


    http://www.meresearch.org.uk/icd-classification/

    ICD Classification
    Posted on 22 Jan 2020

    A revised version of the International Statistical Classification of Diseases and Related Health Problems (ICD-11) is due to be implemented in January 2022.

    The ICD is the diagnostic classification standard for all clinical and research purposes, and is therefore highly influential. Its many uses include identifying health trends, and monitoring and reporting diseases, resource allocation, safety and quality.

    ICD-11 will include a new classification, Bodily Distress Disorder, which is defined as “characterized by the presence of bodily symptoms that are distressing to the individual and excessive attention directed toward the symptoms, which may be manifest by repeated contact with health care providers”.

    There have been understandable concerns that ME/CFS would be grouped under this diagnosis of Bodily Distress Disorder in the new revision, which might mean that individuals with the illness would be directed through psychiatric care.

    However, thanks to the sterling efforts of campaigners over many years, ICD-11 will NOT include Postviral Fatigue Syndrome, Chronic Fatigue Syndrome or Benign Myalgic Encephalomyelitis under the new classification.

    At the moment, ICD-10 lists Benign Myalgic Encephalomyelitis in the ‘Diseases of the nervous system’ heading, under PostViral Fatigue Syndrome (Block 93.3, ICD 10th revision, 2007), as follows:

    • Diseases of the nervous system
      • Other disorders of brain
        • Other disorders of the nervous system
          • G93.3 Postviral fatigue syndrome
            • Benign myalgic encephalomyelitis

    ICD-11 will list both Benign Myalgic Encephalomyelitis and Chronic Fatigue Syndrome separately, but still under ‘Diseases of the nervous system’ and Postviral Fatigue Syndrome (Block 8E49, ICD 11th revision, 2019), as follows:

    • Diseases of the nervous system
      • Other disorders of the nervous system
        • 8E49 Postviral fatigue syndrome
          • Benign myalgic encephalomyelitis
          • Chronic fatigue syndrome
     
    Last edited: Feb 9, 2020
  11. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    Thank you Mary. I was really quite surprised to see this change incorporated for the final release for ICD-10, especially given WHO's silence on the as yet unresolved issue of the deprecation of "Benign" for ICD-11.

    As I've mentioned up-thread, it's unclear whether this request originated from one of the WHO Collaborating Centres or had been proposed by the outgoing URC or the CSAC committee.

    I consider it could be used as a precedent for ICD-10-CM. As you know, the national modifications can incorporate the changes and revisions in the update packages that are released for WHO's ICD-10. When the Update and revision package Zip file which covers the changes from 2018-2019 has been posted on the WHO's site, I'll download it, because it should document this change.

    (The Zip package on the WHO's website which is called "2019" in the file name contains only changes up to 2017. So we might expect another Zip file to be posted this year with the 2018-2019 changes.)
     
    Last edited: Feb 11, 2020
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  12. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Location:
    Earth, in a fractal universe
    Profuse thanks
     
  13. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    Note that the pre-existing ICD-10 Exclusion for "benign myalgic encephalomyelitis (G93.3)" under

    G04 Encephalitis, myelitis and encephalomyelitis


    has also been revised to reflect the removal of the "Benign" prefix for the 2019 (and final) update for ICD-10.
    (The order the Exclusions are listed in has changed because the entities are ordered alphabetically.)


    2016: https://icd.who.int/browse10/2016/en#/G04
    2019: https://icd.who.int/browse10/2019/en#/G04

    [​IMG]
     
  14. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    The ICPC-2 is the WONCA* managed International Classification of Primary Care, Second Edition.

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

    This primary care terminology system is approved by the WHO and a cross map has been developed for ICPC-2 to ICD-10 codes.

    ICPC-2 is available in around 34 countries; is used in primary care in around 27 countries and is mandatory for use in 6 EU countries.

    I don't have a list to hand of which countries it is mandatory for use, but it is used in Spain for recording reason for consultation in primary care. It's also used in Denmark and there is a Danish ICPC-2 extension version.

    It isn't used in the UK or U.S.

    It is envisaged by the developers that the content of ICPC-3 will be linked to relevant classifications, such as ICD-10, ICD-11, ICF, ICHI, DSM-5, clinical terminologies such as SNOMED-CT, but also to previous versions of ICPC.


    I've mentioned before in this thread that ICPC-2 is under revision for ICPC-3.

    ICPC-3 development has a website here:

    http://icpc-3.info

    http://icpc-3.info/about/

    http://www.icpc-3.info/about-project/


    Extract from page:

    http://www.icpc-3.info/what-will-be-new/

    (...)

    Present progress from the ICPC-3 Steering Group Zoom Meeting held on January 20, 2020

    State of workprogress has been presented:

    • Changes – in the ICPC-3 Content Model – new order of Chapters
    • Progress on the content of Chapters – Alpha Version is expected by the end of Februari 2020
    • Work on linking ICPC-3 Interventions to ICHI Interventions:
      • Difference in structure – ICPC-3 has a different orientation than ICHI. ICHI is ICF structure oriented, including Actions.
      • Almost no direct correspondence. Intervention subsets have been selected for ICPC-3 Interventions based on the Action axis of ICHI.
    • Next steps have been discussed, such as: follow-up, maintenance, translations, responsibilities of parties involved, license fees, etc.
    • WONCA has agreed to transfer further work on ICPC-3 to the ICPC-3 Consortium, and its follow-up. Further steps to be developed by WONCA-CEO, WICC-Chair and the ICPC-3 Consortium Projectleaders.

    Other businesses:

    • Contacts have been made between the newly formed WHO PHCPI group, the Consortium and WONCA CEO, resulting in cooperation between all parties.
    • Publication of the new version of ICPC-3. Contacts with the Publisher have been made. The work will be planned after finalization of the present project, but needs preparation by the ICPC-3 Consortium.
    • The Steering Group advocated for visibility of ICPC-3 on WONCA website, being an important landmark for Primary Health Care.

    Report from the ICPC-3 Taskforce Face to Face meeting held on October 29-30, 2019:

    • All Chapters received from WICC Taskforce A have been processed.
    • Order off the Chapters has been changed, Interventions and processes is now Chapter I after the Z-Chapter, Prevention and screening = Chapter II, Functioning and Functioning Related = Chapter III, Extension codes = Chapter IV, and Regional Extensions = Chapter V.
    • The Content Model has been updated according the new structure.
    • Input from the WHO-FIC Annual Meeting in Banff, Canada, October 2019 questioning why WHODAS 2.0 has not been used for the Functioning Chapter = WHODAS 2.0 items have been integrated in ICPC-3.
    • Work done on pain for ICPC-3, based on a question from IASP, how ICPC-3 will be able to support registration of pain in PHC,
    • Report from the WICC meeting on Crete, September 2019, stating the support for the progress of the work the ICPC-3 Consortium has done so far.
    In the meeting it was decided to:
    • Accept WHODAS 2.0 items for the Functioning Chapter, the use of Functioning and Functioning Related classes will be tested, and explained in a ICPC-3 UserGuide,
        • Develop a table for ICPC-3 Functioning items, showing relations between WHODAS 2.0 – ICD-11 Chapter V – ICPC-3 Chapter III and ICF items,
    • Accept the proposal for Chapter Z, which is demonstrating an important part of the reasons why and which work is done daily in Primary Health Care for the first time,
    • Process the outcome from the discussions during the meeting, the ICPC-3 Taskforce members prepared on the Chapters, the new version of the concept ICPC-3 will be online before November 8th, 2019,
        • The ICPC-3 Taskforce will review the results for their own Chapters in due time,
    • Prepare a proposal for pain in ICPC-3 in line with the pain publication from IASP,
    • Prepare for the Field Trials, including:
        • coding in ICPC-3, based on real case diagnostic descriptions
        • coding UseCases – quiz style, including Functioning UsesCases
        • recoding ICD-9 CM, using ICPC-3 (if possible with Canada)
    etc.


    Note that the references to "Functioning Chapter, the use of Functioning and Functioning Related classes" and "Functioning UseCases" relates to "functioning" in the sense of health and disability (compare with the WHO's International Classification of Functioning, Disability and Health, known more commonly as the "ICF").

    [I mention this as I've seen folk on Twitter and a journalist confuse the revision of the WHO's International Classification of Functioning, Disability and Health (ICF) with revision of "functional disorders" or "functional somatic symptoms."]


    The draft content for ICPC-3 is not being developed on a publicly accessible platform and it's unclear whether any form of public stakeholder review will be undertaken, or at what point.

    There is cause for concern regarding the revision of ICPC-2 for ICPC-3:

    Dr Marianne Rosendal (Aarhus University), who has published with Prof Per Fink, is the European representative on WONCA's International Classification Committee and a member of the revision committee for ICPC-2, as is the U.S.'s, Dr Michael Klinkman.

    ICPC-2 meeting summary documents dating from 2010/2011, that I have archived, indicate that Dr Rosendal has discussed the potential for inclusion of a Bodily distress syndrome (BDS) or similar disorder concept for inclusion in ICPC-3.

    Disappointed that he didn't get his BDS into the core ICD-11, Fink is likely to be lobbying hard for its inclusion in ICPC-3, and the development of ICPC-3 will need very close monitoring.

    Marianne Rosendal and Michael Klinkman were also members of the WHO's external Primary Care Consultation Group (PCCG) which is chaired by Prof Sir David Goldberg (Vice-chairs: Dr Michael Klinkman and WHO's, Dr Geoffrey Reed), that has proposed the BDS-lite construct "Bodily Stress Syndrome (BSS)" for the WHO's non mandatory, 27 mental disorder ICD-11 PHC guideline.

    I suspect they are still pushing for a "BSS" category in the forthcoming IPCP-3 since the ICPC is a primary care terminology system.
     
    Last edited: Feb 10, 2020
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  15. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    More on ICPC-3:

    http://www.icpc-3.info/about-project/

    The ICPC-3 Project started January 2018 and runs for a period of three and half years.
    • ICPC-3 Zoom Steering Group meeting: January 20th, 2020
    • Upcomming ICPC-3 Zoom Taskforce meeting: February 12th, 2020
    • The Taskforce Meeting is hosted by the Department of Primary and Community Health Care, Nijmegen, the Netherlands
    In the ICPC-3 Project a new version of the ICPC and an Interface Terminology for Primary Care is under development, based on a novel approach for classification development, i.e. based on a content-model.
    • This novel approach takes into account all desired uses of ICPC in International and different National Primary Care, and Community Care settings.
    • There will be consistency with the principle of interoperability within the Framework of the WHO Family of International Classifications and within Clinical Terminologies.
    • It is also aimed to create a stable model to support continuous central development and maintenance of the ICPC and Interface Terminology.
    • The ICPC-3 Project Secretariat is hosted by the Department of Primary and Community Care / Radboud University Nijmegen, the Netherlands.
    • The ICPC-3 Consortium is founded specifically for the development and future maintenance of ICPC-3.
    Project lead
    • The two project leaders of the ICPC-3 Project are both experts in the development of International Classifications, medical terminology and medical informatics.
    • Both have been engaged in the WHO-FIC PC Taskforce for development of a concept Primary Care linearization of the ICD-11; Kees van Boven as one of the Co-Chairs.
    • The concept linearization for PC of the ICD-11 has not been completed yet, and needs to be further discussed and developed in cooperation with WHO.
    • The insights gained in the work on the concept PC linearization of the ICD-11 is partly feeding into the development of the ICPC-3.
    • These insights can also assist in improving the further development of ICD-11, as the content for the PC linearization at this moment is based on the ICPC-2, which will be replaced by the ICPC-3 in 2020.
    • ICPC-3 can assist to improve ICD-11 for Primary Care and make it suitable for data-exchange in Electronic Health Records.
    • WONCA and the ICPC-3 Consortium is looking forward to a fruitful cooperation with WHO/WHO-FIC as expressed at the FDC/WHO-FIC Network meeting, Oktober, 5-11 2019, Banff, Canada, Oktober.

    Milestones for ICPC-3

    [​IMG]

    My guess is the ICPC-3 development group will end up extending the projected road map.
     
    Last edited: Feb 10, 2020
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  16. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    What is being referred to above is this:

    In ICD-11, it will be possible to generate smaller usecase sub-linearizations from the larger MMS Linearization for selected medical specialities and there is intended to be a sub-linearization of selected categories for primary care (PC).

    So we might anticipate closer integration of ICPC-3 and an eventual core ICD-11 primary care (PC) linearization.

    More on projected relationship between ICPC-3 and ICD-11 here:

    https://www.globalfamilydoctor.com/News/January2019reportofWICC.aspx

    January 2019 report of WICC
    Working Party News March 2019
    February, 2019
     
    Last edited: Feb 11, 2020
  17. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    This is an odd and potentially ambiguous headline and subheading from Solve ME/CFS Initiative:

    Solve ME/CFS Initiative writes:


    https://solvecfs.org/stunning-findings-of-new-pediatric-me-cfs-prevalence-study/

    Update on ME/CFS classification by the World Health Organization (WHO)

    WHO Now Includes ME/CFS in Postviral Fatigue Syndrome in the Neurological Chapter of ICD-11

    As reported by Action for M.E. (UK)


    f
    ollowed by an edited copy of Action for M.E.'s report.


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

    The WHO has included both terms (BME and CFS), separately, under PVFS, in the ICD-11 Diseases of the nervous system chapter since March 26, 2017. The WHO issued a notice in 2018 stating that the terms would remain under PVFS, in the neurological chapter - so this is not a new development.

    ICD-10 has also coded all three terms to G93.3 Postviral Fatigue Syndrome since it was first published, 30 odd years ago.

    There is no term "ME/CFS" in any version of ICD.

    (Note also that some of AfME's use of "ME" has been edited to "ME/CFS".)

    It's difficult to know what Solve ME/CFS Initiative thinks has recently happened or what they understood the previous status to be.

    The story was: that exclusions have recently been added under BDD for all three terms - not that ME/CFS [sic] has recently been included under PVFS in the neurological chapter - as though prior to that the terms had been listed in another location - which is what the subheading might imply to readers unfamiliar with developments with ICD-11 classification and coding.

    If organisations need clarification around ICD-11, I wish they would ask me and I'd be happy to clarify.

    And if an organisation is going to reproduce and link to a report published by another organisation, I don't think it should make changes to the other organisation's text without stating that what they are posting, themselves, has been edited by them.



     
    Last edited: Feb 10, 2020
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  18. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    You could not make this up. This evening, I have established the origin of the proposal for ICD-10 that was approved for incorporation into the final update published a few days ago (ICD-10 Version: 2019).

    The proposal had been submitted by a Ms Kristy Mabon, a Classification Specialist at the Canadian Institute for Health.

    Her proposal for revision of "Benign myalgic encephalomyelitis" to "Myalgic encephalomyelitis" for ICD-10 was submitted to the URC (Update and Revision Committee) on March 16, 2016.

    The proposal is marked: URC (Sept 27, 2016): this proposal was accepted in 2016. Implementation date: 1/2018.

    I've added the information about the history of this ICD submission, a screenshot, and edited in the following text to the proposal I submitted to ICD-11, yesterday. (Until it is marked as being under review I can continue to edit it.)


    "Since a proposal for deletion of the prefix "Benign" had already been accepted by the URC in 2016, for implementation in ICD-10 from 1/2018, there appears to be no basis for the same proposal submitted by Chapman and Dimmock (March 31, 2017 as part of a multi-part submission for ICD-11) being rejected outright in March 2019 (Team3 WHO 2019-Mar-04 - 22:58 UTC). Several requests for the rationale for the decision to reject this proposal have met with no response [14].

    "As URC proposal ID: 2211 has now been incorporated into ICD-10 Version: 2019, this further supports its migration to ICD-11."​


    So the proposal had not come from the URC (or more recently, from the CSAC committee that has taken over the URC's role) but had been submitted by a Canadian classification specialist back in March 2016. (I don't know whether this lady may have been a North American WHO-FIC Collaborating Center rep, at the time.)

    I had a couple of other edits I needed to make to the text, as uploaded yesterday, so I will post a fresh copy of my proposal as it now stands, this evening, in Post #388.

    This is a copy of the submission history from the ICD-10 URC Submission Platform - which should be publicly accessible, if I can find the page for the submission archives search engine:


    [​IMG]

    [Edited for clarity.]
     
    Last edited: Feb 11, 2020
  19. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    What time wasters they are.

    We had written a chunk of text in our March 2017 proposal rationale setting out why "Benign" should be removed. Then in March 2019, they rejected the entire multi-part proposal without providing any rationales for rejecting outright all of the proposals we had asked for, other than re-post the generic comment which they had left on the Dr Tarun Dua proposal of November, 2017, when rejecting her proposal, in November 2018.

    Since March 2019, I have left several comments requesting a specific rationale for not approving the removal of "Benign" - which they have failed to respond to. Now I establish that the URC (ICD-10 Update and Revision Committee) had approved the same proposal back in 2016 for implementation from 1/2018 in ICD-10.

    So the term "Myalgic encephalomyelitis" was the new "legacy" term and that should have been transferred across to ICD-11.


    :banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead:
     
    Last edited: Feb 11, 2020
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  20. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    What a mess. But well done Canadian Institute for Health and Ms Mabon.

    Now that the final release of ICD-10 (Version: 2019) has been published, Canadians won't need to wait for a successful change in ICD-11.

    It should be possible now for the Canadian Institute for Health or another agency or the North American WHO-FIC Collaborating Center to submit for a change in ICD-10-CA. Or via a request from a special interest group or via a public submission.

    Go here for the guidelines for the Canadian public submission mechanism:

    https://www.cihi.ca/en/bulletin/public-submission-guidelines-for-updating-icd-10-ca-and-cci

    Public Submission Guidelines for Updating ICD-10-CA and CCI
    September 25, 2018


    (Please don't post the mechanism text on the forum as CIHI has strict copyright policies.)


    There is a link at the end of the page for the Public submission mechanism.

    The public submission period for the 2024 update of the ICD-10-CA classification is now open.
    The deadline for requests is March 31, 2022.

    Given that the Canadian Institute for Health Information has already secured this change for the WHO's 2019 International version of ICD-10 - it won't be a complex submission to make.

    @ScottTriGuy and your colleagues may want take this forward.
     
    Last edited: Feb 11, 2020

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