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.

ICD-11 Content Model Reference Guide: version for December 2010

ICD-11 Content Model Reference Guide: version for December 2010

Post #62 Shortlink: http://wp.me/pKrrB-Xj

Update @ 1 March 2011

A more recent version of the Content Model document was uploaded to the ICD Revision site on 22 February.

It can be accessed here on the ICD Revision site:

View Word document

Download Word document

Or opened here on DSM-5 and ICD-11 Watch site: Content Model Reference Guide v January 2011

A revised version of the ICD-11 Content Model Reference Guide was uploaded to the WHO’s ICD Revision Google site in January.  This version of the document, dated 27 January 2011, replaces previous versions on DSM-5 and ICD-11 Watch site and on the ICD Revision Google site.

Content Model Reference Guide December 2010 v.1  27 Jan 2011

A copy of this 57 page document can be viewed on the ICD Revision Google site from this page:

http://sites.google.com/site/icd11revision/home/documents

View Word document

Download Word document

or open here on DSM-5 and ICD-11 Watch site: Content Model Reference Guide December 2010 [v.1]

 

Introductory pages

ICD-11 alpha

World Health Organization, Geneva

Content Model Reference Guide 11th Revision

December 2010

Table of Contents

Page 2

Introduction 3
What is the “Content Model”? 4
Explanations on the Content Model 5
Technical Specifications for the Content Model 7
ICD -11 Alpha Content Model 9

1. ICD Entity Title 9

2. Classification Properties 11

3. Textual Definition(s) 17

4. Terms 21

5. Body Structure Description 24

6. Temporal Properties 27

7. Severity Properties 31

8. Manifestation Properties 33

9. Causal Properties 35

10. Functioning Properties 38

11. Specific Condition Properties 42

12. Treatment Properties 44

13. Diagnostic Criteria 45

Section B 46

Appendices 48
Appendix 1: Body Systems Value Set 48
Appendix 2: Temporal Properties Value Set 49
Appendix 3: Temporal Properties Value Set and explanations 50
Appendix 4: Basic Aetiology Value Set 56
Appendix 5: Grammar Rules for Titles and Synonyms 57

Page 3

Reference Guide on the Content Model of the ICD 11α

Introduction

This Reference Guide is intended to define and explain the Content Model used in the ICD-11 alpha draft in practical terms. It aims to guide users to understand the purposes and parameters of the Content Model.

The Reference Guide also informs users about the technical specifications of each parameter which the designers of the iCAT (the computer platform that is used to fill in the content model: international Collaborative Authoring Tool) took into account in building the software.

Accordingly, information on each parameter is given in two sections:

(1) Explanations
(2) Technical specifications

The purpose of this Reference Guide is to ensure that the Content Model and its different parameters are properly understood.

This document will be periodically updated in response to user needs and evolution of the content model.

Brief introduction to the ICD – International Classification of Diseases

The International Classification of Diseases (ICD) is the global standard to report and categorize diseases in order to compile health information related to deaths, illness and injury. The ICD content includes diseases and a range of health problems including disorders, syndromes, signs, symptoms, abnormal findings, complaints, social circumstances, and external causes of injury. The ICD is designed to promote international comparability in the collection, processing, classification, and presentation of these statistics.

In ICD there are multiple classification categories which are defined by explicit or implicit parameters such as: codes, titles, definitions and other characteristics. In ICD 11, we aim to formally represent all this classification knowledge in a systematic way. The Content Model serves this purpose.

Page 4

What is the “Content Model”?

The Content Model is a structured framework that defines “a classification unit” in ICD in a standard way in terms of its components that allows computerization.

A “model” is a technical term that refers to a systematic representation of knowledge that underpins any system or structure. Hence, the content model is an organized description of an ICD unit with its different parameters.

In the past, ICD did not explicitly define its “classification units” – in other words diseases were classified without defining “what is a disease?” (There have been efforts to provide some definitions, inclusions, exclusion information, and some coding rules in the instructions and in the index. Some chapters, such as mental health, oncology, or other groups of diseases have been elaborated with diagnostic criteria. All these efforts may be seen as implicit modelling.) In the ICD 11 revision process, deliberate action is being taken to define the ICD categories in a systematic way and represent the classification knowledge to allow processing within computer systems.

To achieve this aim, different ICD categories have been defined by user groups as to what they are. For example, first a disease was defined as follows:

A disease is a set of dysfunction(s) in any of the body systems defined by:

1. Symptomatology: manifestations: known pattern of signs, symptoms and related findings
2. Aetiology: an underlying explanatory mechanism
3. Course and outcome: a distinct pattern of development over time
4. Treatment response: a known pattern of response to interventions
5. Linkage to genetic factors: e.g., genotypes, patterns of gene expression
6. Linkage to interacting environmental factors

Then the key components of this definition have been operationally defined as different parameters which, as a whole, formed the Content Model.

Page 5

Explanations on the Content Model:

A classification unit in ICD is called an “ICD entity”. In other words, any distinct classification rubric is called an Entity. (The term “Entity” is used interchangeably – in the same meaning — with the term “ICD Concept”.

An ICD entity may be:

– A category
– A block
– A chapter

A category (which is the most common reference to an ICD class) may be a disease, disorder or syndrome; sign, symptom or other health problem such as injuries, or a combination of the above. In addition, ICD has also been used to classify “external causes” or “other reasons for encounter” which are different kinds of entities than the diseases. In other words, “Category” refers to the individual classes represented in the ICD-10 printed version.

The Content Model, therefore, allows the various classification categories to be represented more clearly so that users can identify the classification units in a scientific fashion.

The purpose of the content model is to present the knowledge that lies under the definition of an ICD entity. Each ICD entity can be seen from different dimensions. The content model represents each one of these dimensions as a “parameter”. For example, there are currently 13 defined main parameters in the content model to describe a category in ICD.

TABLE 1: The Content Model main parameters

For each category, various parameters are given different values. For example:

Category: Myocardial Infarction

Parameters:                       Value:
Body system                         Cardiovascular system
Body part                              Heart
Signs/symptoms                   Crushing chest pain, etc.
Investigation Findings           ST elevation in ECG

It is not necessary to describe all categories with all parameters. Only parameters that are relevant to the description of the category should be used. In certain instances such as External Causes, only a number of the parameters are valid for the description of these entities.

The full range of different values for a given parameter is predefined using standard terminologies and ontologies. The predefined values constitute a “value set”.

Read full document here: Content Model Reference Guide December 2010 [v.1]

 

Related documents:

Paper:

http://bmir.stanford.edu/file_asset/index.php/1522/BMIR-2010-1405.pdf

A Content Model for the ICD-11 Revision

Samson W. Tu1, Olivier Bodenreider2, Can Çelik3, Christopher G. Chute4, Sam Heard5, Robert Jakob3, Guoquian Jiang4, Sukil Kim6, Eric Miller7, Mark M. Musen1, Jun Nakaya8, Jon Patrick9, Alan Rector10, Guillermo Reynoso11, Jean Marie Rodrigues12, Harold Solbrig4, Kent A Spackman13, Tania Tudorache1, Stefanie Weber14, Tevfik Bedirhan Üstün3

1Stanford Univ., Stanford, CA, USA; 2National Library of Medicine, Bethesda, MD, USA; 3World Health Organization, Geneva, Switzerland; 4Mayo Clinic College of Medicine, Rochester, MN, USA; 5Ocean Informatics, Chatswood, NSW, Australia; 6Catholic Univ. of Korea, Korea; 7Zepheira, Fredricksburg, VA, USA; 8Tokyo Medical and Dental Univ., Tokyo, Japan; 9Univ. of Sydney, Sydney, NSW, Australia; 10Univ. of Manchester, Manchester, UK; 11Buenos Aires, Argentina;12Université de Saint Etienne, Saint Priest en Jarez, France; 13IHTSDO, USA; 14DIMDI – German Institute of Medical Documentation and Information, Köln, Germany

Abstract

The 11th revision of the International Classification of Diseases and Related Health Problems (ICD) will be developed as a collaborative effort supported by Webbased software. A key to this effort is the content model designed to support detailed description of the clinical characteristics of each category, clear relationships to other terminologies and classifications, especially SNOMED-CT, multi-lingual development, and sufficient content so that the adaptations for alternative uses cases for the ICD – particularly the standard backwards compatible hierarchical form – can be generated automatically. The content model forms the basis of an information infrastructure and of a webbased authoring tool for clinical and classification experts to create and curate the content of the new revision.