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
“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