What are the latest proposals for DSM-5 “Somatic Symptom Disorders” and why are they problematic? (Part 1)

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 1)

Post #75 Shortlink: http://wp.me/pKrrB-12P

DSM stands for Diagnostic and Statistical Manual of Mental Disorders. The DSM is published by the American Psychiatric Association (APA) and contains descriptions, symptoms and criteria for diagnosing mental disorders. It does not include information or guidelines on treatments. DSM is the primary diagnostic system in the US for defining mental disorders and is used to a varying extent in other countries.

As a classification system, DSM does not have quite the significance in the UK as Chapter V: Mental and Behavioural Disorders of the WHO’s ICD-10, which is used more often in Europe for classifying mental health disorders. But the next edition of DSM will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform health care providers and policy makers’ perceptions of patients’ needs for many years to come.

The next edition of DSM, which will be known as DSM-5, is scheduled for publication in May 2013.

Diagnostic criteria defined within the DSM determine what is considered a mental disorder and what is not, what medical treatments individuals receive and which treatments medical insurers will authorise funding for. In addition to use in medical settings, DSM is also used by social services agencies, governments, policy makers, courts, prisons, drug regulation agencies, pharmaceutical companies and in research.

The inclusion or not of a disorder within DSM has revenue implications for pharmaceutical companies seeking licences for new drugs or to expand markets and applications for existing products.

Second public review of proposals for DSM-5

On 4 May, the APA published revised proposals for the 13 Work Groups for the revision of DSM-IV categories and diagnostic criteria on the DSM-5 Development website and issued a news release announcing a second stakeholder review and feedback exercise. According to the DSM-5 Timeline, as it stood in March, this second public review was not expected until August-September.

Q: Is this review and comment process open only to APA members and other professionals?

A: No. All stakeholders are invited to submit comment and feedback on the draft framework and the latest proposed revisions to diagnostic criteria: patients and families, patient advocates and patient representation organizations as well as clinicians, researchers, allied health professionals, lawyers and other end users.

Q: How long will this second review period run for?

A: The DSM-5 Development website is open for commenting now until 15 June.

Q: Is registration required in order to submit feedback?

A: Yes. You will need to register to submit comment to the Work Groups. You can register now on the DSM-5 Development site to participate. Once registered, you can prepare and upload your comment via a WYSIWYG editor anytime until 15 June. More information on registering to submit feedback in Post #78.

Q: Which DSM-5 Work Group proposals have potentially the most implications for CFS and ME patients? 

A: The DSM-5 Work Group which has the most relevance for “Chronic fatigue syndrome”, CFS, “ME”, “CFS/ME”, “ME/CFS”, IBS, Fibromyalgia, Chemical Sensitivity (CS), Chemical Injury (CI), Environmental Illness (EI), GWS and chronic Lyme disease patients is the Somatic Symptom Disorders Work Group (SSD Work Group) which has responsibility for the revision of the categories currently classified in DSM-IV under “Somatoform Disorders”.

Q: Where can I find copies of the comments submitted last year by ME and CFS patient organizations during the first public review?

A: Copies of comments submitted, last year, by international patient organizations to the Work Group for “Somatic Symptom Disorders” are collated here together with some of the feedback submitted by patients and patient advocates: http://tinyurl.com/DSM5submissions

Q: How many submissions did the 13 DSM-5 Work Groups and Task Force receive during the first review?

A: The APA reports having received over 8000 comments across all categories.  After the review period had closed, the Task Force did not publish summaries of key areas of concern brought to its attention by stakeholders and neither has the Task Force nor individual Work Groups published responses to areas of major concern.

Q: How many submissions were received in response to the proposals published last year for the “Somatic Symptom Disorders” categories?

A: The APA did not publish a breakdown of the numbers of responses received by each of the 13 Work Groups.

 

Q: How do the current DSM-IV categories for “Somatoform Disorders” compare with ICD-10?

A: There is a degree of correspondence between the current Somatoform Disorders section in DSM-IV and the equivalent section in ICD-10 Chapter V Mental and behavioural disorders. This simplified table sets out how the two classification systems currently correspond for their respective Somatoform Disorders categories:

Current DSM-IV Codes and Categories for Somatoform Disorders and ICD-10 Equivalents

Source: Mayou R, Kirmayer LJ, Simon G, Kroenke K, Sharpe M: Somatoform disorders: time for a new approach in DSM-V. Am J Psychiat. 2005;162:847–855.

Neurasthenia is not categorized in DSM-IV. Neurasthenia is classified in ICD-10 in Chapter V Mental and behavioural disorders, at F48.0, as shown in the table, above.

Chronic fatigue syndrome is not classified in DSM-IV. Chronic fatigue syndrome is indexed in ICD-10 to G93.3, (Chapter VI Diseases of the nervous system – the Neurology chapter), the same code to which PVFS and (Benign) ME are classified.

ICD-10 has “Fatigue syndrome”  [Note: not “postviral”; not “chronic”] coded at F48.0 in Chapter V, which specifically excludes G93.3 Postviral fatigue syndrome.

(Please refer to the “ICD-10 Classification of Mental and Behavioural Disorders Clinical descriptions and diagnostic guidelines” aka “the Blue Book” and to ICD-10 online for full categories, disorder descriptions, inclusions and exclusions for ICD-10 Somatoform Disorders.) [9] [10]

 

Q: What does “Harmonization” between DSM-IV and the forthcoming ICD-11 mean?

A:  The APA participates with the WHO in an International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and a DSM-ICD Harmonization Coordination Group.

There is already a degree of correspondence between some categories in DSM-IV and their equivalent sections in ICD-10 Chapter V. For their next editions, the APA and the WHO have committed as far as possible:

“To facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria.”

with the objective that

“The WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM.”

The WHO acknowledges there may be areas where congruency between the two systems may not be achievable.

Q: Is ICD Revision intending to harmonize its Somatoform Disorders categories with the current proposals for DSM-5?

A: DSM-5 proposals are a “work in progress”. The proposals of the Somatic Symptom Disorders Work Group for the revision of categories within this section represent a radical restructuring of the current DSM-IV Somatoform Disorders; following fields trials, the Work Group will review and potentially revise their proposals. These proposals may be found to be inoperable in the field or otherwise unacceptable to clinicians participating in field trials. The Task Force may require the Work Group to make substantial modifications to the current proposals. A third public review is scheduled for January-February 2011 prior to the finalization of categories and criteria.

It’s not known how closely the DSM-5 Work Group for “Somatic Symptom Disorders” are collaborating with the ICD Revision working group responsible for overseeing the revision of ICD-10’s Somatoform Disorders categories.

There have been no minutes or summaries of meetings of the International Advisory Group for the Revision of ICD-10 Mental and behavioural disorders, in which the APA participates and which is chaired by DSM-5 Task Force member, Steven E Hyman, MD, published since December 2008 (a point raised recently with the WHO’s Dr Bedhiran Üstün) and the ICD Revision Topic Advisory Group for Mental Health does not issue public reports on its progress.

It is not known whether, to what extent or at what stage in the Alpha/Beta drafting process ICD Revision might seek to achieve congruency between category names, glossary descriptions and criteria for ICD-11 Chapter 5 and those being proposed for the restructured DSM “Somatoform Disorders” section. But the classifications under “Somatoform Disorders” for ICD-11 Chapter 5, according to the iCAT Alpha Drafting platform as it stood in November, last year, did not appear to mirror the proposals of the DSM-5 SSD Work Group:

Chapter 5 (V) Somatoform Disorders (the F codes) F45 – F48.0 (as displaying in the iCAT Alpha Drafting platform in November 2010):

(It is understood from ICD documentation that the child categories F45.40 and  F45.41 are proposed new entities for ICD-11.)

From what is understood of ICD taxonomic and ontological principles, the conceptual framework and radical restructuring of the Somatoform Disorders currently proposed by the SSD Work Group, might prove difficult for ICD-11 to assimilate even if ICD Revision were to consider the proposals, per se, to be valid constructs that could be used reliably.

 

Q: What proposals are being put forward for the revision of the DSM-IV categories currently known as “Somatoform Disorders”?

A: The SSD Work Group is recommending renaming the “Somatoform Disorders” disorders section of DSM-IV to “Somatic Symptom Disorders”.

The Work Group proposes combining existing categories – Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC), Factitious Disorder and Factitious Disorder imposed on another (previously known as Factitious Disorder by proxy) into one group entitled “Somatic Symptom Disorders”. Alternatively, Factitious Disorders would be listed under the category “Other Disorders”.

The Work Group’s summary justification is ‘Because the current terminology for somatoform disorders is confusing and because somatoform disorders, psychological factors affecting medical condition, and factitious disorders all involve presentation of physical symptoms and/or concern about medical illness, the work group suggests renaming this group of disorders Somatic Symptom Disorders. In addition, because of the implicit mind-body dualism and the unreliability of assessments of “medically unexplained symptoms,” these symptoms are no longer emphasized as core features of many of these disorders.’

‘…since Somatization Disorder, Hypochondriasis, Undifferentiated Somatoform Disorder, and Pain Disorder share certain common features, namely somatic symptoms and cognitive distortions, the work group is proposing that these disorders be grouped under a common rubric under a new category called “Complex Somatic Symptom Disorder” (CSSD).’

There is a relatively recent additional proposal for a category called “Simple (or abridged) Somatic Symptom Disorder” (SSSD).

These proposals would represent a major change in the diagnostic nomenclature for this section of the DSM.

The Work Group also proposes a category “Illness Anxiety Disorder” (hypochondriasis without somatic symptoms) and recommends the existing Conversion Disorder category be renamed “Functional Neurological Disorder”. (‘Somatic’  means of or relating to the body.)

 

Q: Have there been changes since the publication of the initial proposals, in February 2010?

A: Since the first public review, the Work Group has modified the criteria for “Complex Somatic Symptom Disorder (CSSD), added a new proposal for a category called “Simple Somatic Symptom Disorder” and made revisions to the text of the two key PDF documents. So you will need to review the most recent criteria and the two key documents that accompany these latest proposals if you are intending to submit comment.

I shall be posting the latest proposals for criteria and the two key “Disorder Description” and “Rationale” documents in the next post (Post #77).

 

References

1] APA 4 May 2011  News release No. 11-27  or  http://tinyurl.com/APAnewsrelease4may11

2] “Somatic Symptom Disorders” Work Group Members, Bios and Disclosures

3] Latest proposals for “Somatic Symptom Disorders”

4] Key Somatic Symptom Disorders PDF Document: Disorder Descriptions

5] Key Somatic Symptom Disorders PDF Document: Justification of Criteria

6] Revised DSM-5 Timeline

7] Register on the DSM-5 site to submit stakeholder feedback

8] APA’s FAQ on DSM-5

[9] ICD-10 online (version for 2007) Chapter V: Somatoform Disorders: F45-F48.0 codes”

[10] ICD-10 Classification of Mental and Behavioural Disorders Clinical descriptions and diagnostic guidelines” (aka “the Blue Book”) PDF format

APA News Release 4 May 2011: New Framework Proposed for Manual of Mental Disorders

APA News Release 4 May 2011: New Framework Proposed for Manual of Mental Disorders

Post #74 Shortlink: http://wp.me/pKrrB-12x

http://tinyurl.com/APAnewsrelease4may11

APA News Release 4 May 2011

American Psychiatric Association

News Release

For Information Contact:                                                            Release No. 11-27
Eve Herold 703-907-8640
press@psych.org

Erin Connors 703-907-8562
econnors@psych.org

FOR IMMEDIATE RELEASE

New Framework Proposed for Manual of Mental Disorders
APA Revisions a Key Step in Development of DSM-5

ARLINGTON, Va. (May 4, 2011) The American Psychiatric Association today released the organizational framework proposed for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). This restructuring of the DSMs chapters and categories of disorders signals the latest scientific thinking about how various conditions relate to each other and may influence care. The APA is again inviting comment from the public and mental health and other professionals who use the manual for both diagnostic and research purposes.

The revisions reflect the knowledge we have gained since the last DSM was published in 1994, said David Kupfer, M.D., chair of the DSM-5 Task Force. They should facilitate more comprehensive diagnosis and treatment approaches for patients and encourage research across diagnostic criteria.

The changes re-order the existing manuals 16 chapters based on underlying vulnerabilities as well as symptom characteristics, which currently result in many patients being diagnosed with multiple disorders within and across disorder groups. The chapters are arranged by general categories such as neurodevelopmental, emotional and somatic to reflect the potential commonalities in etiology within larger disorder groups.

The sequence of chapters builds on what we have learned about the brain, behavior and genetics over the past two decades, noted Steven Hyman, M.D., former director of the National Institute of Mental Health and a member of the DSM-5 Task Force.

Public comment is invited through June 15 on the draft framework and the latest proposed revisions to diagnostic criteria, both available on http://www.dsm5.org. During an initial public review and comment period last year an unprecedented occurrence in both the field of psychiatry and in medicine the APA received more than 8,000 written responses from clinicians, researchers and family and patient advocates. All of the responses were considered as part of the manuals reorganization.

Todays release marks another stage in the development of DSM-5. Rigorous scientific scrutiny is shaping this 14-year project, with the involvement of nearly 500 experts from the United States and abroad. Publication is scheduled for 2013.

The manuals new organization combines certain disorders under more comprehensive chapter headings while breaking others out from their previous categories. One example is obsessive-compulsive disorder (OCD), long considered to be an anxiety-driven disorder. Recent studies have shown that OCD and several related disorders involve distinct neurocircuits, and so they are now listed as a separate grouping a move that could advance understanding of their root causes.

There are other notable changes. Disorders previously listed under a single rubric of infancy, childhood and adolescence have been integrated into other chapters, in line with the goal of making DSM more developmentally focused. In addition, research findings linking schizophrenia and schizotypal personality disorder into a schizophrenia spectrum will be reflected in this next edition.

The schizophrenia spectrum designation is supported by studies showing how these disorders tend to aggregate within families, said Darrel Regier, M.D., M.P.H., vice chair of the DSM-5 Task Force and executive director of the American Psychiatric Institute for Research and Education. It will help clinicians to correctly diagnose patients by making clear the common features that fall within the spectrum.

To date, reports on the deliberations and progress of the task force and 13 work groups have been presented at international conferences, through more than 100 papers and via the DSM-5 website. After last years public comment period, the work groups continued to amend and refine some categories of disorders.

The first round of field trials is now testing the new diagnostic criteria in real-world settings, including at nearly a dozen larger academic and clinical centers; almost 3,900 mental health professionals in individual practice and smaller settings also will participate before the trials conclude. Another public comment period on the criteria will then follow.

The DSM-5 framework and diagnostic criteria will be determined by 2012 and submitted to the APAs Board of Trustees for review and approval.

At every stage, said Kupfer, DSM-5 is benefiting from a depth of research and a breadth of expertise and diverse opinions that will immeasurably strengthen the final document.

The American Psychiatric Association is a national medical specialty society whose more than 36,000 physician members specialize in the diagnosis, treatment, prevention and research of mental illnesses, including substance use disorders. Visit the APA at www.psych.org and www.healthyminds.org.

 

Media coverage, APA’s 4 May DSM-5 announcement

MedPage Today

CNN Blog

 

Related information:

Post: 05.05.11 American Psychiatric Association (APA) announces second public review of DSM-5 draft criteria and structure

APA announces second public review of DSM-5 draft criteria and structure

American Psychiatric Association (APA) announces second public review of DSM-5 draft criteria and structure

Post #73 Shortlink: http://wp.me/pKrrB-12k

Second public stakeholder review and feedback period now 4 May to 15 June

APA News Release No: 11-27 PDF: http://tinyurl.com/APAnewsrelease4may11 

or open PDF on this site here: New Framework Proposed for Manual of Mental Disorders

Online posting of draft disorders and criteria proposed by the 13 DSM-5 Work Groups for new and existing mental disorders had originally been scheduled for May-June, this year. According to a revised Timeline on the APA’s DSM-5 Development site, in March, this second public review exercise had been rescheduled for August-September:

“August-September 2011: Online Posting of Revised Criteria. Following the internal review, revised draft diagnostic criteria will be posted online for approximately one month to allow the public to provide feedback. This site will be closed for feedback by midnight on September 30, 2011.”

But yesterday, 4 May, the APA announced that the second public review period is now open and will run from May to 15 June.

The DSM-5 site was updated yesterday with announcements and revised proposals (dated May 4, 2011) across all categories. The current review period closes on 15th June – just six weeks away.

Note that this is a public and stakeholder review and feedback exercise and is not restricted to professionals or members of the American Psychiatric Association.

There is a Task Force announcement here: http://www.dsm5.org/Pages/Default.aspx

[Extracts]

What Specifically Has Changed on This Site?

“You will notice several changes to this Web site since we first launched in February 2010. Numerous disorders contain updated criteria…

” ...Is There Opportunity to Provide Further Comments?

“At this time, we are asking visitors to review and comment on the proposed DSM-5 organizational structure and criteria changes. Please note that the current commenting period will end on June 15, 2011. It is important to remember that the proposed structure featured here is only a draft. These proposed headings were reviewed by the DSM-5 Task Force in November 2010…

“…The content on this site will stay in its current form until after completion of the DSM-5 Field Trials, scheduled to conclude later this year. Following analysis of field trial results, we will revise the proposed criteria as needed and, after appropriate review and approval, we will post these changes on this Web site. At that time, we will again open the site to a third round of comments from visitors, which will be systematically reviewed by each of the work groups for consideration of additional changes. Thus, the current commenting period is not the final opportunity for you to submit feedback, and subsequent revisions to DSM-5 proposals will be jointly informed by field trial findings as well as public commentary.

“We look forward to receiving your feedback during the coming weeks and appreciate your participation in this important process.”      [Source: http://www.dsm5.org/Pages/Default.aspx]

There are brief notes on the proposed DSM-5 Organizational Structure here:

http://www.dsm5.org/proposedrevision/Pages/proposed-dsm5-organizational-structure.aspx

The “Recent updates” page for “DSM changes” and “Disorder-specific changes” is here:

http://www.dsm5.org/Pages/RecentUpdates.aspx

 

Registration for submitting feedback

Last year, registration was required in order to submit comment via the DSM-5 Development website. You can register to submit feedback on the DSM-5 Development site home page or on the individual pages for specific category proposals (right hand side under “Participate”).

The revised Timeline can be read here: http://www.dsm5.org/about/Pages/Timeline.aspx

According to the Timeline, a third review and feedback is currently scheduled for January-February 2012, for two months.

 

Latest revisions for “Somatic Symptom Disorders”

http://www.dsm5.org/ProposedRevision/Pages/SomaticSymptomDisorders.aspx

I will post  information in the next posting specific to the proposals of the DSM-5  Work Group for “Somatic Symptom Disorders”

 

Media coverage of APA’s 4 May DSM-5 announcement

MedPage Today

CNN Blog

CFSAC Spring 2011 Meeting Agenda (May 10-11)

CFSAC Spring 2011 Meeting Agenda (May 10-11)

Post #72 Shortlink: http://wp.me/pKrrB-126

The Agenda for the next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) has been issued and can be read on the CSFSAC website here and below.

Transcripts of some Public and Written Testimonies for the May meeting can be read on this page of the CFSAC website.

“The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

  • factors affecting access and care for persons with CFS;
  • the science and definition of CFS; and
  • broader public health, clinical, research and educational issues related to CFS.

“Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

“Dr. Wanda K. Jones, Principal Deputy Assistant Secretary for Health in OASH, will continue in her role as the Designated Federal Officer for CFSAC.”

I am pleased to see that discussion of concerns around the proposed coding of CFS for the forthcoming US specific “Clinical Modification” of ICD-10, which is known as “ICD-10-CM”, has been tabled for further discussion, at 1.15pm on Day One of  the meeting.

CFSAC Spring 2011 Meeting Agenda (May 10-11)

Day One

9:00 a.m.

Call to Order
Opening Remarks

Dr. Christopher Snell
Chair, CFSAC

Roll Call, Housekeeping

Dr. Wanda Jones
Designated Federal Official

9:15 a.m.

Agency Updates and Progress on Recommendations: CDC, HRSA, AHRQ, FDA, CMS

Ex-Officio Members

10:00 a.m.

State of the Knowledge Workshop- Outcomes and Committee Discussion

Dennis Mangan, NIH
Committee Members

11:00 a.m.

Break

11:15 a.m.

Public Comment

Public

12:15 p.m.

Subcommittee Lunch

Subcommittee Members

1:15 p.m.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns

Committee Members

2:15 p.m.

Committee Discussion

Committee Members

3:15 p.m.

Break

3:30 p.m.

Public Comment

Public

4:30 p.m.

Committee Discussion and Plans for Day 2

Committee Members

5:00 p.m.

Adjourn

 

Day Two

9:00 a.m.

Call to Order
Opening Remarks:

Dr. Christopher Snell
Chair, CFSAC

Roll Call, Housekeeping:

Dr. Wanda Jones
Designated Federal Official

9:15 a.m.

Welcome Statement from the Assistant Secretary for Health

Dr. Howard K. Koh

9:30 a.m.

Social Security Administration: Presentation on Disability

John Federline, SSA

10:00 a.m.

ERISA and Insurance Issues for CFS Patients (Tentative)

Department of Labor (TBD)

11:00 a.m.

Break

11:15 a.m.

Committee Discussion

Committee Members

12:00 p.m.

Subcommittee Lunch

Subcommittee Members

1:00 p.m.

Public Comment

Public

2:00 p.m.

Break

2:15 p.m.

Committee Discussion: Finalize Recommendations

Committee Members

4:30 p.m.

Adjourn

Related information

[1] Post: Next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US): http://wp.me/pKrrB-YY

[2] Post: CFS orphaned in the “R” codes in US specific ICD-10-CM: http://wp.me/pKrrB-V4

[3] International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM). Note: The 2011 release of ICD-10-CM is now available and replaces the December 2010 release:
http://www.cdc.gov/nchs/icd/icd10cm.htm

[4] US “Clinical Modification” ICD-10-CM. This article clarifies any confusion between ICD-10, ICD-11 and the forthcoming US Clinical Modification, ICD-10-CM: http://wp.me/pKrrB-Ka

[5] Chronic Fatigue Syndrome Advisory Committee (CFSAC). The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Minutes of meetings, Recommendations and meeting videocasts:
http://www.hhs.gov/advcomcfs/meetings/index.html

ICD Revision Process Alpha Evaluation Meeting presentations

ICD Revision Process Alpha Evaluation Meeting documents and PowerPoint slide presentations

Post #71 Shortlink: http://wp.me/pKrrB-10i

The information in this mailing relates only to ICD-11, the forthcoming revision of ICD-10 that is scheduled for completion and pilot implementation in 2014/15. It does not apply to the forthcoming US specific Clinical Modification of ICD-10, known as ICD-10-CM.

ICD Revision Process Alpha Evaluation Meeting

An ICD Revision Process Alpha Evaluation Meeting was held, last week, in Geneva. See this post on DSM-5 and ICD-11 Watch site for more information and commentary: http://wp.me/pKrrB-ZN

The Agenda for the meeting can be read here: ICD11 April 2011 Meeting Agenda Word .docx

Following this meeting, it is anticipated that ICD Revision Steering Group may make a public announcement within the next few weeks of how it intends to proceed in light of the fact that the timeline for transition from the Alpha to Beta drafting phases has slipped.

The meeting Agenda and PowerPoint slides suggest that ICD Revision is working towards making a version of the drafting platform publicly available around 16 May, this year, but that this may be a compromise on previous plans and possibly a “hybrid” between the Alpha and Beta drafting phases.

Earlier timelines had approval by World Health Assembly (WHA) slated for May 2014, with pilot implementation of ICD-11 in March 2014. One presentation slide now suggests approval by WHA in 2015.

It’s unconfirmed, but if this is the case, WHO may have already decided to shift WHA endorsement and dissemination of ICD-11 by 12 months, to 2015. This would mean that DSM-5 would have been put to bed and published two years prior to ICD-11 implementation.

From the meeting Agenda:

“Future Phases:

a. iCAT continued alpha development and evaluation ( 2010-11)

b. iCAT beta phase ( 2012-2015)

c. iCAT continuous maintenance phase ( 2015+)”

In November, last year, the iCAT collaborative authoring platform through which ICD-11 is being drafted was taken out of the public domain. A revised version of the software on which the platform runs is currently sitting on a Standford server, behind a password, accessible only to ICD Revision. This, or a similar version, may be made publicly accessible (or accessible to those who register for access) from mid May.

There has been discussion is earlier ICD Revision documents of a hierarchy of stakeholder input – but there is nothing much on this in the meeting presentations, for which ICD Revision has published only slides – not transcripts.

Coming up on DSM-5 and ICD-11 Watch:

ICD-11 proposals for PVFS, ME and Chronic fatigue syndrome

Until some form of Alpha/Beta transition drafting platform is back in the public domain, it won’t be evident how much further forward the population of content for Chapter 6 Diseases of the nervous system has progressed since last November. As more information becomes available, I will update, and I will be posting a summary of how things stood in the iCAT last November, in Post #72.

ICD Revision Process Alpha Evaluation Meeting presentations

There are five presentations published for this meeting: the following three may be of interest to those following the development of ICD-11:

(The 2007 MS PowerPoint viewer is required to view PowerPoint presentations which have been created in .pptx format. A MS .pptx viewer can be downloaded for free from the Microsoft site.)

Open full PowerPoint Presentation:”The Way Forward Questions Options” [.ppt]: TheWayForwardPP

Selected slides from “The Way Forward Questions Options”

Slide 2

Slide 3

Slide 5

Slide 6

Slide 12

Slide 17

Open full PowerPoint Presentation:”The Way Forward Questions Options” [.pptx]: TheWayForwardPP

——————

Open full PowerPoint Presentation: Proposal for the ICD Beta Platform, Stanford team” [.ppt]: iCATBetaStanford[1]

Selected slides from “Proposal for the ICD Beta Platform, Stanford team”

Slide 5

Slide 11

Slide 12

Slide 41

Slide 42

Slide 43

Slide 44

Slide 45

Slide 46

Slide 51

Open full PowerPoint Presentation: Proposal for the ICD Beta Platform, Stanford team” [.ppt]: iCATBetaStanford[1]

——————

Open full Can Celik PowerPoint Presentation: “Public Tooling” [.pptx]: Ppt0000069 CanCelic 

Selected slides from Can Celik’s PowerPoint Presentation: “Public Tooling”

Slide 4

Slide 7

Slide 10

Slide 11

Slide 12

Slide 13

Slide 14

Slide 15

Open full Can Celik PowerPoint Presentation: “Public Tooling” [.pptx]: Ppt0000069 CanCelic 
 

Key documents and references:

1] ICD Revision Process Alpha Evaluation Meeting Agenda and background documents

2] Report, WHO FIC Council conference call, 16 February 2011, PDF format

3] Key document: ICD Revision Project Plan version 2.1 9 July 2010

4] Key document: Content Model Reference Guide version January 2011

5] PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform (DSM-5 and ICD-11 Watch report with screenshots from the iCAT): http://wp.me/pKrrB-KK

ICD Revision Process Alpha Evaluation Meeting 11-14 April: The Way Forward?

ICD Revision Process Alpha Evaluation Meeting 11 – 14 April 2011: The Way Forward?

Post #70 Shortlink: http://wp.me/pKrrB-ZN

The information in this mailing relates only to ICD-11, the revision of ICD-10 scheduled for completion and pilot implementation in 2014/15. It does not apply to the forthcoming US specific “Clinical Modification” of ICD-10, known as ICD-10-CM.

The Way Forward?

ICD-11 Revision maintains a website on a Google platform where key documents, agendas for iCAMP and workgroup meetings, background documents and presentations can be viewed and downloaded. Minutes or summaries of meetings aren’t usually posted publicly:

ICD-11 Revision: http://sites.google.com/site/icd11revision/home

An ICD Revision Process Alpha Evaluation Meeting was held in Geneva, last week, between 11-14 April, for discussing the status of the revision of ICD-10 and development of ICD-11, for both content and software development, and reviewing the ICD revision “Roadmap” and Timeline.

A copy of the Meeting Agenda can be downloaded from the ICD-11 Revision site here or opened on DSM-5 and ICD-11 Watch site here: ICD11 April 11 Meeting Agenda. There are some interesting comments in the Agenda Appendix on project funding, lack of resources, project management and lines of communication.

There are five PowerPoint presentations available to download from this page.

If you are interested in the ICD Revision process, in general, then I suggest visiting the site and viewing or downloading the following three presentations – these are slides only, with no notes or transcripts.

(The 2007 MS PowerPoint viewer is required to view presentations that have been created in .pptx format. A .pptx viewer can be downloaded free from the Microsoft site.)

.ppt file: The Way Forward

.pptx file: Can Celik’s Presentation: Public Tooling

.pptx file: Stanford’s Presentation: iCAT Beta

These three presentations can also be opened in the next post on DSM-5 and ICD-11 Watch site and selected slides have been posted here:

Post #71: ICD Revision Process Alpha Evaluation Meeting documents and presentations

 

“Community engagement”

In mid 2009, ICD Revision launched a number of platforms as channels of communication with the public and maintains a YouTube Channel, Facebook site, Twitter and blog. The ICD-11 blog has not been updated since October 2009 and queries left on the Facebook site by members of the public may take several months before a response is provided or may receive no response, at all.

The YouTube videos made to accompany various Geneva meetings can also be accessed on the ICD Revision YouTube page of my site. The two most recent videos give an overview of the iCAT drafting process and the extent of the ICD-11 “Content Model” – the 13 parameters through which ICD-11 categories can be described.

 

Visibility of iCAT drafting platforms

Following last week’s ICD Revision Process Alpha Evaluation Meeting, it is anticipated that ICD Revision may make a public announcement, within the next few weeks, clarifying how it intends to proceed in light of the fact that the timeline for the Beta drafting phase is slipping.

The meeting Agenda and PowerPoint slides suggest that ICD Revision is working towards making a version of the drafting platform publicly available around 16 May, this year, but that this may represent a compromise on previous plans and may be a “hybrid” between the Alpha and Beta drafting phases.

From the Agenda:

“Future Phases:

a. iCAT continued alpha development and evaluation ( 2010-11)

b. iCAT beta phase ( 2012-2015)

c. iCAT continuous maintenance phase ( 2015+)”

Earlier timelines had projected endorsement by the World Health Assembly (WHA) and pilot implementation of ICD-11 in the spring of 2014. But one presentation slide suggests approval by WHA in 2015.

It’s unconfirmed, but if the “Milestones” timeline has been revised to accommodate a later release of a Beta drafting phase platform and later publication of a Beta Draft, then WHO may have already decided to shift the pilot implementation date for ICD-11 by 12 months, to 2015.

That would mean that by the time ICD-11 is ready for dissemination, the American Psychiatric Association’s DSM-5 would have already been put to bed and out in print two years prior to ICD-11 implementation.

It is intended that for ICD-11, all three volumes will be electronically published and capable of continuous updating in response to scientific developments (unlike ICD-10 where there are annual updates); there will also be electronic translations and print editions. The three volumes of ICD-11 are intended to be integrable with each other and also with some other classification systems. 

The drafting platforms are based on Web 2.0 applications and it is proposed that there will be stakeholder and end user participation in the Beta drafting phase.

The IT work and software development for the various alpha and beta drafting platforms and final product platforms is enormously complex; there is also the potential for far more textual content in ICD-11 than there was in ICD-10 and overall, this revision project represents a huge undertaking by an under-resourced organization.

 

The ICD-11 Alpha/Beta drafting process

Topic Advisory Group (TAG) Managing Editors overseeing the revision of the various chapters of ICD-10 have responsibility for recruiting external experts, via networking. The function of the external experts is to peer review proposals being made by TAG members or submitted by external professional bodies and institutions and to review or assist with the generation of textual content.

[In late 2009, I approached the WHO’s Dr Robert Jakob to enquire whether and at what stage the names of external peer reviewers would be identified in the drafting platforms, as visible to the public. I also asked whether the reviewing of proposals as they progressed through the Workflow review system would be a transparent process that could be monitored by the public. Neither query produced a response from Dr Jakob.]

So there are many lines of communication to be maintained between WHO classification experts, IT consultants and technicians, Revision Steering Group members, TAG Managing Editors, TAG members and external experts. There is an ICD-11 Collaborative Authoring Workflow chart here: workflow-2.

At the Beta drafting stage, the proposal is that TAG Managing Editors will continue to recruit external peer reviewers to assist workgoups with reviewing of categories, proposals and generation of content, but that versions of the Beta drafting platform would be opened up to the public for viewing, and interested stakeholders would be able to register for limited input and interaction.

Stakeholders (or preferably, communities of stakeholders) would not have editing rights, per se, but the proposal is that they would comment on proposals, “score” proposals and make evidence-based suggestions which the TAG groups would then consider for approval, which would then be incorporated into the draft or rejected.  There has also been discussion of a “hierarchy” of levels of input according to professional status of stakeholders. How ICD Revision plans to verify the credentials of professionals isn’t clear, nor is it defined what would consitute a stakeholder “community”.

No static Beta Draft for public review and comment

Rather than release a static Beta draft for professional and public scrutiny in a feedback exercise for a pre-determined review period (as DSM-5 has already done and is scheduled to do again in August-September), the proposal appears to be for longer term feedback during an alpha/beta transition drafting phase on dynamic content that would be continuously updated, for example, on a four weekly cycle, to reflect the progress being made by the various Topic Advisory Groups in entering proposals for changes and populatation of textual content, and in response to external input.

So managing editors and members of the Topic Advisory Groups (mostly international clinicians and researchers juggling this work on top of their “day jobs”) are faced with maintaining lines of communication, largely via electronic means, between workgroup chairs, fellow workgroup members, external peer reviewers and WHO classification experts whilst also considering input from professional bodies, and working in the background on the drafting platform, while stakeholders are commenting and feeding suggestions into the process via the public versions of the drafting platforms. 

[Some organizations and professional bodies have been compiling and submitting proposals via an ICD Revision Proposal Form, since late 2009. There is no publicly available list of which institutions and bodies have been invited to submit proposals, which have responded, or where their submissions for changes to ICD-10 can be scrutinised, but copies of these submissions occasionally turn up online, having been published in the organs of these organizations.]

Selected slides from “Proposal for the ICD Beta Platform, Stanford team”:

Slide 11

Slide 12

Slide 42

Slide 43

Slide 45

Slide 46

 

“…who will do all this work?”

Presentations and video clips of the WHO’s Dr. Bedirhan Üstün suggest a man buzzed up on information and internet technology: “cloud sourcing”, portals, public commenting and “scoring” of proposals, wikis, blogs,  internal and public “user communities”, drawing in the involvement of “Wikipedians” and other existing “editing communities” (one questions whether Dr Üstün has any experience of how Wikipedia functions and the problems inherent with some Wikipedia admins and editors, particularly in relation to editing of controversial scientific and medical areas), message boards, Facebook integration, “community engagement”…

But as the closing slide of one of last week’s presentations ruefully comments, “And just a small detail: who will do all this work?” [6]

ICD Revision and its IT and informatics advisors seem eager to use these internet applications because they exist, without having given due consideration to whether the WHO can fund, manage and sustain this level of public participation and interaction or whether this is the best way to approach the revision of the ICD.

How does ICD Revision intend to finance and recruit the personnel needed to manage the opening up of the drafting process to multiple platforms for stakeholder participation, given WHO’s limited resources when already, no-one can evidently be spared to even keep the ICD-11 blog updated or to respond to queries that members of the public have posted on ICD Revision’s existing public platforms and where Topic Advisory Group Chairs approached for brief clarifications are not always providing a response nine months down the line?

Who is going to pull this most ambitious project back down to earth?

Insufficient funding allocated and no Project Manager

From the Appendix to the April meeting Agenda:

“TAGs were supposed to be self-financed.  The TAG chair was supposed to have funding to carry out their revision work.”

“As this is a core WHO activity, we should have regular budget funds for this project.  The scale of this project is too big not to have funding for a project manager.”

“Additionally, ALL relevant WHO departments should have designated some financial and some human resources to this project as part of the collaborative effort.”

“…communication between the TAGs is growing, and it is beginning to become overwhelming in addition to clinical responsibilities.”

 

ICD-11 proposals for PVFS, ME and Chronic fatigue syndrome

Until some form of Alpha/Beta transition drafting platform is back in the public domain, it won’t be evident how much further forward the population of content for Chapter 6 Diseases of the nervous system has progressed since last November. As more information becomes available, I will update, and I will be posting a summary of how things stood in the iCAT last November in Post #72.

The meeting Agenda, selected slides and three of the PowerPoint presentations can be viewed/opened from Post #71, on DSM-5 and ICD-11 Watch site, here:

ICD Revision Process Alpha Evaluation Meeting documents and presentations

 

Key documents and related posts:

1] ICD Revision Process Alpha Evaluation Meeting Agenda and background documents

2] Report, WHO FIC Council conference call, 16 February 2011, PDF format

3] Key document: ICD Revision Project Plan version 2.1 9 July 2010

4] Key document: Content Model Reference Guide version January 2011

5] PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform (DSM-5 and ICD-11 Watch report with screenshots from the iCAT): http://wp.me/pKrrB-KK

6] Closing remarks, PowerPoint presentation: “Proposal for the ICD Beta Platform”, Stanford team, 12.04.11, WHO, Geneva.