The document discusses the history and development of the International Classification of Diseases (ICD) over 150 years from its origins in William Farr's work in the mid-19th century to the current revision process for ICD-11. It notes that ICD-11 aims to evolve as a multi-purpose classification that can serve various uses in an electronic environment and be linked to other clinical terminologies and ontologies. The development includes creating a foundation component with detailed disease descriptions and linearizations tailored for specific uses such as mortality statistics and primary care.

1. Dr. T. Bedirhan Üstün
World Health Organization
Classifications , Terminologies, Standards
State of the
WHO FIC 2015

2. History of Disease & Health
in the World
• 243 BC: plague in China
• 800 s : smallpox in Japan
• 1090s: dysentery in Palestine
• 1340s: "Black Death" in Europe
• 1830s: cholera worldwide
• 1917–19: influenza worldwide
• …
• …
• 1976-2015 Ebola

3. Genealogy of ICD  1664

4. William Farr to
• Farr developed the first national vital statistics system as a
instrument for epidemiologic studies.
• to crafted a disease nosology usable by vital statisticians and
epidemiologists led to the creation of the ICD
• The structure of the ICD derives from Farr's 1860 proposal.
150 year later WHO
shares the vision of Farr to implement it further
in the digital health space

7. ICD Revisions
139
161
179
189
205
214
200
954
965
1,040
1,164
8,173
1,967
14,473
1
10
100
1000
10000
100000
Farr/d'Espine
Bertillon
ICD1
ICD2
ICD3
ICD4
ICD5
ICD6
ICD7
ICD8
ICD9
ICD-9-M
ICD10
ICD-10-M
1853 1893 1900 1909 1920 1929 1938 1948 1955 1968 1975 1979 1990 1993

11. Reporting of Mortality in the World

12. Information Paradox
0
100000000
200000000
300000000
400000000
500000000
600000000
700000000
800000000
1 2 3 4
YLLs
VR countries vs No VR
Burden of Mortality

17. Shepherding
simple requirements
1. Count your sheep
• How many born ?
• How many dead ?
2. Don’t cry wolf !

18. Millenium Development Goals

19. 20 October: WORLD STATISTICS DAY 2015

20. the information YOU -
₋ have is not what you want
₋ want is not what you need
₋ need is not what you can have
Finagle's Law of Information

21. Finagle's Law of Information
In other words there is always a gap
between what you have, need or want

23. Health Information needs Health Informatics
Computational
Processing
Knowledge
INPUTS
Analytical process OUTPUT
• Mechanisms
• Interventions
• Policies
• Statistics
• Aggregation
• Ontologies
• Data
• Information

24. GIGO:
Garbage In
Out ?

25. Can we build the Big Intelligence ?

26. Why is this Sooooo important ?

27. How do we
optimize our
health
services
E-he@lth
Health Information Systems: Analog to Digital

28. Placing WHO Classifications in HIS & IT
Population Health
• Births
• Deaths
• Diseases
• Disability
• Risk factors
e-Health Record
Systems
ICD
ICF
ICHI
Classifications
KRs
Terminologies
Clinical
• Decision Support
• Integration of care
• Outcome
Administration
• Scheduling
• Resources
• Billing
Reporting
• Cost
• Needs
• Outcome

29. ICD-11 Revision Goals
1. Evolve a multi-purpose and coherent classification
• Mortality, morbidity, primary care, clinical care, research, public health…
• Consistency & interoperability across different uses
2. Serve as an international and multilingual reference standard for
scientific comparability and communication purposes
3. Ensure that ICD-11 will function in an electronic environment.
• ICD-11 will be a digital product
• Support electronic health records and information systems
• Link ICD logically to underpinning terminologies and ontologies (e.g. SNOMED, GO, …)
• ICD Categories “defined” by "logical operational rules" on their associations and details

30. Ontology (philosophy)
the Organization of Reality  !!!
 Ontology (computer science)
– the explicit – operational description of
the conceptualization of a domain
• Entities
• Atributes
• Values
• An ontology defines:
– a common vocabulary
– a shared understanding/exchange:
• among people
• among software agents
• between people and software
– to reuse data - information
– to introduce standards to allow
interoperability
What is “NOntology” ?

31. Knowledge Representation
the triad of things, thoughts and words
(Ogden & Richards, 1923 )
APPLE
TERM

32. THE CONTENT MODEL
Any Category in ICD is represented by:
1. ICD Concept Title
1.1. Fully Specified Name
2. Classification Properties
2.1. Parents
2.2 Type
2.3. Use and Linearization(s)
3. Textual Definition(s)
4. Terms
4.1. Base Index Terms
4.2. Inclusion Terms
4.3. Exclusions
5. Body Structure Description
5.1. Body System(s)
5.2. Body Part(s) [Anatomical Site(s)]
5.3. Morphological Properties
6. Manifestation Properties
6.1. Signs & Symptoms
6.2. Investigation findings
7. Causal Properties
7.1. Etiology Type
7.2. Causal Properties - Agents
7.3. Causal Properties - Causal Mechanisms
7.4. Genomic Linkages
7.5. Risk Factors
8. Temporal Properties
8.1. Age of Occurrence & Occurrence Frequency
8.2. Development Course/Stage
9. Severity of Subtypes Properties
10. Functioning Properties
10.1. Impact on Activities and Participation
10.2. Contextual factors
10.3. Body functions
11. Specific Condition Properties
11.1 Biological Sex
11.2. Life-Cycle Properties
12. Treatment Properties
13. Diagnostic Criteria

33. The ICD Foundation Component
• is a collection of ALL ICD
entities like diseases,
disorders...
• It represents the whole ICD
universe.
• In a simple way, the foundation component is similar to a “store” of
books or songs.
• From these elements we build a selection as a linearization.
• This analogy may however be misleading because there are many links
between the ICD entities (like parent-child relations and other).
• The ICD entities in the Foundation Component:
• are not necessarily mutually exclusive
• allow multiple parenting ( i. e. an entity may be in more
than one branch, for example tuberculosis meningitis is
both an infection and a brain disease)

34. The ICD Linearizations
• A linearization is a subset of the
foundation component, that is:
• Fit for a particular purpose: reporting mortality,
morbidity, or other uses
• Jointly Exhaustive of ICD Universe (Foundation
Component)
• Composed of entities that are Mutually Exclusive of
each other
• Each entity is given a single parent

35. 36
Foundation: ICD
categories with
- Definitions, synonyms
- Clinical descriptions
- Diagnostic criteria
- Causal mechanism
- Functional Properties
Find Term
SNOMED-CT,
International Classification of Functioning,
Disability and Health (ICF)…
Linearizations
Mortality
Morbidity
Primary Care

36. • Open and Collaborative Platform
• Web based
• Like WIKIPEDIA
• But
• by the Content Model
• with
• by the TAGs , and scientific peers

37. ICD11 βeta
• http://www.who.int/classifications/icd/revision
• Beta – Browser & Print
10 look & feel + descriptions – code structure !
• ICD-11 Beta draft is NOT FINAL
• updated on a daily basis
•NOT TO BE USED for CODING except
for agreed FIELD TRIALS
βeta

38. ICD-11 Features
Internet Based
Platform
Content Model
Multi Lingual Representations
Definitions
Input from
all Stakeholders
‫لعربية‬ Arabic
官话 Chinese
English English
Français French
Русский язык Russian
Español Spanish
Deutsch German
Português Portuguese
Field Trials for
Use Cases
Electronic Health Record
Ready

42. Level Name Use Case Size Pre –Post
Coordination
1 SHORT
Linearization
 Primary Care
– Low Resource
o {Short Mortality -
Verbal Autopsy ?}
~ 1500 categories Pre-
coordinated
2 Intermediate
Linearization
 Primary Care – High
Resource
~ 3000 categories Pre-
coordinated
3 Common
Linearization
 Joint Linearization for
Mortality and
Morbidity Statistics
Volume I tabular list
15,000 categories Pre-coordinated
(mortality)
Pre + Post
Coordinated
(morbidity)
4 Extension
Linearizations
 National Linearizations
 Specialty Linearizations
> 15,000
categories
Pre + Post
Coordinated

43. Linearizations:
Zoom-in Zoom-Out

44. Linearizations:
PC short PC Intermediate JLMMS

45. Current Status
• Frozen May 2015 … JLMMS
• iCAT continues real time… BROWSER
• Linearization errors < 274 (from 10K)
• Duplicates < 269 (from 3K)
• Definitions
• Top level > 75 % ~ 10,000 definitions

46. • Mortality
• Morbidity
• ICD-10-WHO with ICD-11-WHO
• ICD-10&11-WHO with ICD-10-GM
• ICD-10&11-WHO with ICD-10-CA
• ICD-10&11-WHO with ICD-10-AM
• ICD-10&11-WHO with ICD-10-CM
Stability Analysis
Types & Methodology

47. Mapping Tool

48. Transcoding tables ICD-10 to ICD-11
in excel

49. Diff Files

50. Diff Files

51. ICD-10 ICD-11 correspondence
• 3 character
w/o ECI & Residuals
• 930 Equivalent
• 189 mapped to a larger entity in 11
• with post coordination many have equivalent maps
• 6 not mapped
1125 TOTAL
• 4 character
• 3980 Equivalent
• 1108 mapped to a larger entity in 11
• with post coordination many have equivalent maps
• 4 not mapped
• 5092 TOTAL

52. ICD-10 ICD-11 correspondence
• 3 character
w/o with ECI & Residuals
• 930 1412 Equivalent
• 189 615 mapped to a larger entity in 11
• with post coordination many have equivalent maps
• 6 112 not mapped
1125 2249 TOTAL
• 4 character
• 3980 5262 Equivalent
• 1108 3769 mapped to a larger entity in 11
• with post coordination many have equivalent maps
• 4 43 not mapped
• 5092 9074 TOTAL

53. ICD11 Coding Tool
Poster C304

54. What can a ICD11 CODE represent?
1 2 3 4
Service
Contacts
Episode of
Care
Inpatient Community Residential Ambulatory
1 2 3 54
Course
A
B
C
D
Illness
A B

55. X – Chapter: Extension Codes
Type 1 Type 2 Type 3
Severity Main Condition (types) History of
Temporality
(course of the condition)
Reason for
encounter/admission
Family History of
Temporality
(Time in Life)
Main Resource Condition Screening/Evaluation
Etiology Present on Admission
Anatomic detail
Topology
Specific Anatomic
Location
Provisional diagnosis
Histopathology Diagnosis confirmed by
Biological Indicators Rule out / Differential
Consciousness
External Causes (detail)
Injury Specific (detail)

57. Defusing the exploding bicycle:
500 codes in pieces
• 10 things to hit…
• Pedestrian / cycle / motorbike / car / HGV / train / unpowered vehicle / a tree / other
• 5 roles for the injured…
• Driving / passenger / cyclist / getting in / other
• 5 activities when injured…
• resting / at work / sporting / at leisure / other
• 2 contexts…
• In traffic / not in traffic
V12.24 Pedal cyclist injured in collision with two- or three-wheeled motor vehicle, unspecified pedal cyclist, nontraffic
accident, while resting, sleeping, eating or engaging in other vital activities

58. • Pre-coordination - fixed names
V12.24 Pedal cyclist injured in collision with two- or three-wheeled motor
vehicle, unspecified pedal cyclist, nontraffic accident, while resting, sleeping,
eating or engaging in other vital activities
ICD Organization
• Post- Coordination - extensions
• Bicycle Accident
• Hit
• Role
• Context
• Activity

60. POST COORDINATION MECHANISM
• Extension codes are implemented in iCAT
• Sanctioning tables are being generated
• REQUIRED
• ALLOWED
• DISALLOWED
• First target group is the REQUIRED
a. ICD-10 categories which have equivalence with ICD11 STEM + X codes
(around 1000 codes)
b. other

61. Background 1:
National Linearization(s)
level 3
- JLMMS
level 4
National Linearization(s)
- Morbidity only !
- Mortality will use JLMMS
Specialty Linearizations
- Morbidity only
- Research 64
3 4

62. Background 2:
STEM CODES & Extension codes
• Precoordinated ICD-11 codes are called STEM CODES
• STEM CODES give the basic classification tree structure
• Additional details are added to STEM CODES by
EXTENSION CODES
Pre-coord. Post-coordination
1 - 3 / 4 5 – 6
STEM
Code
EXTENSION
CODES
ICD11 levels

63. Background 3:
Sanctioning Tables
66
• Not all extension codes could be used for a given STEM CODE
• Applicable extensions for a stem code will be specified in SANCTIONING TABLES
• Sanctioning tables will identify each relevant item as:
• Required
(this set is essential for JLMMS – Morbidity)
• Applicable
• Non-applicable

64. • 2015 : Beta version for Review & Field Trials
• +2 YR : Field trials
• 2016 : Information Session at WHA
• 2018 : Final version for WHA Approval
• 2019+ implementation
• Continuous Annual Cycles
• ICD 2019
• ICD 2020
ICD-11 Timeline

65. Achievements
• Good foundation – linearization mechanism
• Joint Linearization for Mortality and Morbidity Statistics
• Model for Multiple Linearizations ( Primary Care1, Others)
• Model for retrofitting: ICD-10, ICD-10-CM or others…
• Model for future updates and maintenance
• Stability with ICD-10 with Transcoding and Crosswalk tables
• Definitions
• Content Model – allow semantic web properties
• Quality Check mechanisms
• Annotations for reasons for changes
• Post-coordination Mechanism
• Proposal Mechanism
• Review Mechanism
• Computerized Index
• CODING TOOL
• Multilingual Presentation: Computer-assisted crowd sourced Translations
• SNOMED Linkages:
• > 4000 New Codes

66. Still To Do…
• Continue improvements… JLMMS vs Clinical
• Finalization of key linearizations: JLMMS first
• National linearizations -
• Specialty linearizations –
• Continuous Review Process
• Improvement of INDEX
• Continuation: RSG  URC
• URIs - web services
• Automated Coding Tools for Mortality ?
• DRG groupers?

67. • 2015 : Beta version for Review & Field Trials
• +2 YR : Field trials
• 2016 : Information Session at WHA
• 2018 : Final version for WHA Approval
• 2019+ implementation
• Continuous Annual Cycles
• ICD 2019
• ICD 2020
ICD-11 Timeline

68. Transition Study
• What does it take a Member State to make the
transition to ICD-11?
• Current implementation state
• Users & Stakeholders: data generators, data users, implicated
groups
• Current applications: size, scope, costs- benefits
• Health Information needs
• How are the health data used? ICD data used?
• Gaps?
• Plans for future next 5-10-20 years
• E-health development policy
• Business Plan
• Benefits, Costs, Risks

69. Beta
• Comments
• Proposals
• Field Trials
• Review Mechanism

70. ICD-10 B24 HIV disease B24 HIV disease
ICF activity limitations
performance restriction in:
Moving around (d455.44)
Washing (d510.33)
Education (d830.44)
…
Almost fully functional
moderate participation restriction in
Higher education (d830.03)

71. Separate Classification of
Disease and Disability
+ = case
Diagnosis Disability => better
formulation
of caseness

72. Added Value of Disability Information
Predictive power
13%
8%
19%
28%
100%
100%
150%
123%
OR 1
OR 1
OR 1
OR 14
OR 4
OR 15
Functioning
Information

73. Networking Networks: WHOFIC and WHODAR

74. Ruy Laurenti David Gray

76. Socrates says to Crito:
“We owe a cock to Asclepius."

77. IEKYF RQMSI ADXUO KVKZC GUBJ
• forbidden fruit
• the object that fell on Isaac
Newton in legend
• Witch’s Apple …
• the fruit of the tree of
knowledge