Dr. T. Bedirhan ÜstünWorld Health Organization

Classifications, Terminologies, Standards

What is “Health Information”?

What is “Health” ?

What is “Health Information System” ?

a state of complete

physical, mental,

and social well-being and not merely the

absence of disease or infirmity

Source: WHO’s Constitution, 1948

Health is…

History of 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

• 1996- 2015 SARS, H1N1, Ebola

…http://www.mla-hhss.org/histlink.htm

Health Indicators• Maternal Mortality• Neonatal Mortality• Infant Mortality• Child Mortality• Adult Mortality• A g e -specific Mortality• Cause-specific Mortality• Stillbirth rate• Risk factors…

http://www.who.int/gho/publications/world_health_statistics

Death - Life

CLASSIFICATIONS ,TERMINOLOGIES, STANDARDS… BUILDING BLOCKS OF HEALTH INFORMATION …

Between BIRTH a n d DEATH© NewYorker – Jack Ziegler (2000)

“Definition” of an Elephant

• A pillar

• A huge fan

• A rope

• A huge mass

• A pointed hard horn

• A bad smell

• …

“Health” as a C o n t i n u u m in M u l t i p l e Dimensions

10/20

2/20

1/20

Mild-Moderate vision impairment:Needs eye glasses, contact lenses…

Severe vision impairment:Needs operation

Complete vision impairment (blind): Needs assistance – pension, device, assistantenvironmental modifications

Seeing Functions

A vector model combination of multiple vectors of functioning

Vision

Hearing

Mobility

Social Activities

Work

Cognition

Selfcare

Mobility Spectrum M u l t i p l e S U B Dimensions

• Sitting• Crawling• Getting out of the bed • Bending body parts• Standing• Walking

– long distance – inside the house/residence

• Running – long distance

• Climbing• Lifting objects• Using tools - vehicles

– Assistive devices

Health C o n t i n u u mcan be used for interventions

Vision

0

10

20

30

40

50

60

1 2 3 4 5 6 7 8

Functioning level

Popu

latio

n

Eyeglasses/ Contact lenses

Cataract Operation

Blind

Functioning ≡ Health

Health ≡ Functioning • Health IS NOT opposite of DEATH – DISEASE

• Health is about your LIFE» How do you life your life – How are you ?» How do you FUNCTION?

H e a l t h i s F U N C T I O N I N G

Out of Plato's Cave• Measuring "latent"

traits– Mobility– Seeing– Hearing– Cognition– Communication– …

Health / Functioning has M u l t i p l e DIMENSIONs

• Moving• Seeing• Hearing• Eating• …. • ….• Relating• Socializing

World Health Assembly, 2001

Endorse and publish ICF use the ICF in Member States in:

research surveillance reporting

Joint use with ICD Operational subsets:

surveys clinical encounters

Periodic revision

CLASSIFICATIONS & TERMINOLOGY

ICF

1. Main volume with glossary- Full version 9999 cat.- Short version 99 cat.

2. Clinical Descriptions& Assessment Guidelines

3. Online access - CD Rom

4. Other versions- Children and Youth

5. Dedicated Assessment Tools

- Checklists- WHO DAS 2.0

Principles of ICF • Universality

– Not particular impairment groups– Equally applicable to everyone – Represents health as multi-dimensional

construct

• Body Functions – Impairments– Scientific basis

• Activities– What the individual can do / does do

• Participation– Active performance in society

• Environment – Interaction of person with the environment

• Identification of barriers• Identification of facilitators

BODY PERSON SOCIETYFunction/ Activities ParticipationStructure (impairment) (limitation) (restriction)

BODY functions ACTIVITIES PARTICIPATION & Structures

Key Concepts of Functioning & Disability

BODYFunction/Structure (impairment)

PERSON Activities (limitation)

SOCIETY Participation (restriction)

ICF: MULTIDIMENSIONAL Functioning / disability concept

Minority Model vs Universal Model

Everyone may have disabilityContinuumMulti-dimensional

Certain impairment groupsCategoricalUni-dimensional

ICF Concepts

Impairment Activities Participation(function/structure) (Activity Limitation) (Participation Restriction)

Health Condition(disorder/disease)

Environmental PersonalFactors Factors

What should this audience NOT be told?

• Human Functioning - not merely disability

• Universal Model - not a minority model

• Integrative Model - not merely medical or social

• Interactive Model - not linear progressive

• Parity - not etiological causality

• Context - inclusive - not person alone

• Cultural applicability - not western concepts

• Operational - not theory driven alone

• Life span coverage - not adult driven

ICF as the Rosetta Stone

• Operational definitions• Mapping across instruments• Anchoring extent of difficulty

with known calibrators• Distinguishing health states,

symptoms, functional abilities and performance

• International comparability

Clinical Language"… have been speaking prose without knowing it …"

• Everything that is not poetry is prose

• "Good Heavens! For more than forty years I have been speaking prose without knowing it."

Le Bourgeois GentilhommeMolière (1670) Act 2 Scene 4

• Theory• Tools• Practice

"Unless we measure health, we cannot manage and improve health systems. The ICF is the ruler with which we will take precise measurements of health and disability”.

Dr Gro Harlem BrundtlandDirector General Emeritus, WHO

“The ICF is the ruler…”

0

5

10

15

20

25

30

35

Prev

alen

ce in

% /

YLD

s

Disability Prevalence in selected EU countries

Health Information E x c h a n g e

• Map Questions to ICF• Map response scale to ICF Qualifiers

– seek equivalence– Use Modern Item Response Theory to

achieve comparability between different tools

WHODAS 2.0 ICF based assessment instrument for measuring

health and disabilityl Developed after extensive cross-cultural

and psychometric testing

l 6 Domains! Understanding the world around you

! Getting Around! Self-Care

! Getting along with people! Life activities (household, work)

! Participation in Society

l Advanced Scoring! Domain and summary score

! Population norms

l No. of disability days in last month

l Available as ! Short version (12 items) ! Long version (36 items)

Outpatient care (Mex-ico City)

Outpatient care (Ibadan, Nigeria)

Outpatient care of elderly (London,

UK)

Primary health care (Seattle, USA)

0 0.2 0.4 0.6 0.8 1 1.2 1.4

0.8

1.07

0.44

0.72

0.74

0.81

0.23

1.32

Comparator WHO DAS II

WHO DAS 2.0 Responsiveness in subjects with depression

Effect size ( mean/ SD1)

LHS

LHS

SF-36 (MCS)

SF-36 (MCS)

N = 100

N = 60

N = 40

N = 73

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)

Separate Classification of Disease and Disability

+ = case

Diagnosis Disability => better formulation of caseness

Operationalization of Diagnosis

ICDA Specific phenomenologyB Signs and SymptomsC ….D Exclusion rules

DSMA Specific phenomenologyB Signs and SymptomsC DISABILITY & DISTRESSD Exclusion rules

How do we optimize

our health services

Health Systems & Information Systems:Analog to Digital

Placing WHO Classifications in HIS & IT

Population Health• Births • Deaths • Diseases• Disability • Risk factors

e-Health RecordSystems

ICD ICF

ICHI

Classifications

Mappings

Terminologies

Clinical• Decision Support• Integration of care• Outcome

Administration• Scheduling• Resources • Billing

Reporting• Cost• Needs• Outcome

ICF Ontology: Knowledge RepresentationCommon sense/intuition Disciplined definitions

"One day I read a book and whole my life changed "Orhan Pamuk, Nobel Literature Laurate, 2006

Ontology (philosophy)

• Being And NothingnessAn Essay in Phenomenological Ontology

• the Organization of Reality • is an oxymoron !!!

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 software agents• between software and People

– to reuse data - information– to introduce standards to allow

interoperability

– among People ?

What is “NOntology” ?

Knowledge Representationthe triad of things, thoughts and words

(Ogden & Richards, 1923 )

APPLETERM

Conclusion # ICFOntology

• Development of Health Information

Systems is the second most critical issue

in Health Care today

• Integration of Functioning and

Disability Information in HIS essential

– Mapping of Assessment Instruments to ICF

– Mapping between ICF and clinical terminologies (SNOMED-CT)

• Placing ICF in the Health Information Systems & IT• Real on-line data capture & analysis for:

• clients • providers • decision-makers

• Develop linkages to health information bases:• Population registry• Insurance systems • Health services

• Develop relation-standards, tools & exchange platforms• Demonstrate feasibility and utility

• direct consumer access• Service provision: volume and flow management, resource allocation• Reporting: Needs, Outcomes, Costs

ICF Vision

This can also help close the information gaps with digital outreach

Interoperability

Stock ExchangeHealth Information Exchange

Questions & Answers

ustunb@who.int

@ustunb

“Diagnosis” alone fails to predict:

• service needs (National Advisory Mental Health Council 1993)

• length of hospitalisation (McCrone and Phelan, 1994)

• level of care (Burns, 1991)

• outcome of hospitalization (Rabinowitz et al, 1994) • receipt of disability benefits (Massel et al, 1990; Segal and Choi, 1991;

Basset and Regier)

• work performance (Gatchel et al, 1994; Massel et al, 1990)

• social integration (Ormel et al, 1993)

Dx + “Disability” can predict:

• health service utilization (Hoeper et al 1979; Regier et al, 1985; Basset and Folstein, 1991; Von Korff et al, 1992; Ormel et al, 1993)

• Length of Hospitalization (Horn, 1990) • Outcome after hospitalization (Rabinowitz et al, 1994)

• return to work (Hlatky et al, 1986)

• work performance (Massel et al, 1990)

• recovery of social integration (Tate, 1989)

Added Value of Disability InformationPredictive power

13%8%

19%28%

100%100%

150%123%

OR 1

OR 1

OR 1

OR 14

OR 4

OR 15

Functioning Information