Improving the Population’s Health Through Standards: The Case for ICF

ICDR State-of-the-Art Conference

New Federal Applications of ICF

Arlington, Virginia

July 10-11, 2007

Marjorie S. Greenberg, M.A. (msg1@cdc.gov)

National Center for Health Statistics, CDC

Head, NACC

Presentation Agenda

• Appreciation• The Case for Data Standards and ICF• International Classification of Functioning,

Disability and Health (ICF)– WHO, What, Why, When, Where and How

• Implementation of ICF in North America and internationally

• Foreshadow selected Conference presentations

Underlying Assumption

Information on functional status is becoming increasingly essential for fostering healthy people and a healthy population. Achieving optimal health and well-being for Americans requires an understanding across the life span of the effects of people’s health conditions on their ability to do basic activities and participate in life situations – in other words, their functional status.

----NCVHS June 2001 (http://www.ncvhs.hhs.gov/010617rp.pdf )

What are Data Standards?

• Essential Building Blocks of Information Systems– Classification Systems and Terminologies (e.g.,

ICD, ICF, SNOMED)– Core Data Sets (vital statistics, hospital discharge

data)– Identifiers (provider, plan, individual)– Message formats (e.g., HL-7 and X12)– Implementation Guides– Privacy and Security

The Case for Data Standards

• Data Standards are the common language that allows:– sharing information– communication across disciplines– integration of disparate data systems– comparisons among data sets– linkage of data in a secure environment

WHO Family of International Classifications

• A suite of classifications for international use as meaningful information tools to capture the core health dimensions, such as deaths, disease, disability and health as well as related health system parameters such as health interventions

WHO Family of ClassificationsREFERENCE

Classifications

I I nternationalnternationalCC lassification of lassification of DD iseases iseases

II nternational nternationalCC lassification of lassification of FF unctioning, unctioning, Disability & HealthDisability & Health

II nternational nternational CC lassification of lassification of HH ealth ealth I I nterventions nterventions (under development)(under development)

RELATED Classifications

International Classification of Primary Care (ICPC)

International Classification of External Causes of

Injury (ICECI)

The Anatomical, Therapeutic, Chemical

(ATC) classification system with Defined Daily Doses

(DDD)

ISO 9999 Technical aids for persons with disabilities

– Classification and Terminology

DERIVED Classifications

International Classification of Diseases for Oncology, Third

Edition (ICD-O-3)

The ICD-10 Classification of Mental and Behavioural

Disorders

Application of the International Classification of Diseases to

Dentistry and Stomatology, Third Edition

(ICD-DA)

Application of the International Classification of Diseases to

Neurology(ICD-10-NA)

ICF, Children & Youth Version (ICF -CY)

WHO Collaborating Centres for International Classifications

• ICD and ICF are maintained and promoted by an international network of WHO Collaborating Centres for the Family of International Classifications

• Network includes Collaborating Centres, WHO HQ, WHO country and regional offices, other members of WHO member States, and non-governmental organizations

http://www.who.int/classifications/en/

WHO Collaborating Centres for International Classifications

• Centres are established by language and geography

• North American Collaborating Center (NACC) was established at NCHS in 1976

• NCHS partners with Statistics Canada and Canadian Institute for Health Information

• Designation is in partnership with Pan American Health Organization

• http://www.cdc.gov/nchs/about/otheract/icd9/nacc.htm

International Classification of Impairments, Disabilities and

Handicaps (ICIDH)

• WHO developed preliminary scheme concerning consequences of disease in 1972

• First edition of ICIDH was published in 1980; reprinted with additional foreword in 1993.

• Revision process for ICIDH initiated 1993• Evaluation, conferences and field trials• Resulted in development of ICF

New paradigm vs. Old paradigmNew paradigm vs. Old paradigm

Everyone may have Everyone may have disabilitydisabilityContinuumContinuumMulti-dimensionalMulti-dimensionalNeutral languageNeutral language

Specific impairment Specific impairment groupsgroupsCategoricalCategoricalUni-dimensionalUni-dimensionalPathology languagePathology language

World Health Assembly World Health Assembly

May 2001May 2001 Endorse and publish ICFEndorse and publish ICF

use the ICF in Member States in:use the ICF in Member States in:

researchresearch

surveillance surveillance

reportingreporting

Joint use with ICDJoint use with ICD

Operational subsets:Operational subsets:

surveys surveys

clinical encountersclinical encounters

Periodic revisionPeriodic revision

ICF as an International StandardICF as an International Standard

• to provide to provide a a scientific basisscientific basis for consequences of health for consequences of health

conditionsconditions

• to establish ato establish a common languagecommon language to improve communications to improve communications

• to permit to permit comparison of datacomparison of data across:across:– countries countries – health care disciplines health care disciplines – services services – timetime

• to provide ato provide a systematic coding schemesystematic coding scheme for health information for health information

systemssystems

Availability of ICF

• Developed and published simultaneously in the six WHO official languages:– English Spanish French– Chinese Arabic Russian

• Full version and short version• Public access on the internet• Electronic versions available

Multilingual CD-ROM Browser Multilingual CD-ROM Browser

& Internet Edition& Internet Edition• classification in its tree classification in its tree

structurestructure• Two languages at the Two languages at the

same timesame time• Advanced search Advanced search

functionfunction• Cross references via Cross references via

hyperlinkshyperlinks• Selects and work on Selects and work on

subsetssubsets• Internet based Internet based

upgrading facilitiesupgrading facilities

The ICF Online Browser!http://www3.who.int/icf/onlinebrowser/icf.cfm

Foundations of ICFFoundations of ICFHuman Functioning Human Functioning - - notnot merely disability merely disability

Universal Model Universal Model - - notnot a minority model a minority model

Integrative Model Integrative Model - - notnot merely medical or social merely medical or social

Interactive Model Interactive Model - - notnot linear progressive linear progressive

Parity Parity - - notnot etiological causality etiological causality

Context - inclusive Context - inclusive - - notnot person aloneperson alone

Cultural applicability Cultural applicability - - notnot western concepts western concepts

Operational Operational - - notnot theory driven alone theory driven alone

Life span coverage Life span coverage - - notnot adult driven adult driven

Health Condition Health Condition ((disorder/diseasedisorder/disease))

Interaction of ConceptsInteraction of ConceptsICF 2001ICF 2001

Environmental Environmental FactorsFactors

Personal Personal FactorsFactors

Body Body function&structurefunction&structure

(Impairment)(Impairment)

ActivitiesActivities(Limitation)(Limitation)

ParticipationParticipation(Restriction)(Restriction)

Tear of articular cartilage of kneeS 83.3

4th floor without liftCrutchesPhysical therapyPain medications

(60 yr old, motivated)

Contextual factors

The Biopsychosocial Model of Functioning and Disability

Carrying objects, kneeling, walking, climbing

Body functionand body structure

Take care of her grandchild

Doing houseworkAssisting her

husband with his business

Pain, stability of joints,

muscle power

Articular cartilage of

knee

ICF ComponentsICF Components

Body FunctionsBody Functions&&

StructuresStructures

Activities Activities & &

ParticipationParticipation

Environmental Environmental FactorsFactors

BarriersBarriers

FacilitatorsFacilitators

Functions Functions

Structures Structures

CapacityCapacity

PerformancePerformance

Body Functions and StructuresBody Functions and Structures

Skin and related structuresSkin and related structuresFunctions of the skin and related Functions of the skin and related structuresstructures

Structures related to movementStructures related to movementNeuromusculoskeletal and Neuromusculoskeletal and movement-related functionsmovement-related functions

Structures related to the genitourinary Structures related to the genitourinary and reproductive systemsand reproductive systems

Genitourinary and reproductive Genitourinary and reproductive functionsfunctions

Structures related to the digestive, Structures related to the digestive, metabolic and endocrine systemsmetabolic and endocrine systems

Functions of the digestive, metabolic Functions of the digestive, metabolic and endocrine systemsand endocrine systems

Structures of the cardiovascular, Structures of the cardiovascular, immunological and respiratory immunological and respiratory systemssystems

Functions of the cardiovascular, Functions of the cardiovascular, haematological, immunological and haematological, immunological and respiratory systemsrespiratory systems

Structures involved in voice and Structures involved in voice and speechspeech

Voice and speech functionsVoice and speech functions

The eye, ear and related structuresThe eye, ear and related structuresSensory functions and painSensory functions and pain

Structures of the nervous systemStructures of the nervous systemMental functionsMental functions

Activities and ParticipationActivities and ParticipationDomainsDomains

11 LearningLearning &Applying Knowledge&Applying Knowledge22 General Tasks and DemandsGeneral Tasks and Demands33 CommunicationCommunication44 MovementMovement55 Self CareSelf Care66 Domestic Life AreasDomestic Life Areas77 Interpersonal InteractionsInterpersonal Interactions88 Major Life AreasMajor Life Areas99 Community, Social & Civic LifeCommunity, Social & Civic Life

Activities and ParticipationActivities and ParticipationDomains: Four OptionsDomains: Four Options

• Activity is the execution of a task or action by an individual

• Participation is involvement in a life situation• No overlap between domains• Partial overlap between domains• Detailed categories as activities and broad

categories as participation with or without overlaps

• Total overlap of domains

Environmental FactorsEnvironmental Factors

1. 1. Products and technology Products and technology 2. Natural environment and human-made 2. Natural environment and human-made

changes to the environmentchanges to the environment3. Support and relationships3. Support and relationships4. Attitudes 4. Attitudes 5. Services, systems and policies 5. Services, systems and policies Environmental Factors are to be coded from Environmental Factors are to be coded from

the perspective of the person whose the perspective of the person whose situation is being described and can serve situation is being described and can serve as Facilitators or Barriersas Facilitators or Barriers

Every ICF Code requires a Qualifier

• Depending on the ICF domain, the base ICF code can be modified to impart information about– extent of impairment,

– nature and location of impairment,

– performance and capacity, and

– degree of facilitation, depending on the ICF domain

• General categories: None, Mild, Moderate, Severe, and Complete

Every ICF Code requires a Qualifier

• Body Structures codes can include up to 3 post-decimal Qualifier digits, representing extent, nature, and location of structural impairment

• Body Functions codes can include 1 Qualifier, representing extent of functional impairment

• A&P codes can include a Performance Qualifier and a Capacity Qualifier with/without assistance

• EF codes can include a PLUS or MINUS sign to indicate a Facilitator or Barrier, and a Qualifier digit indicating the degree of facilitation

ICF StructureICF Structure

ClassificatioClassificationn

PartsParts

ComponentsComponents

Constructs/Constructs/qualifiersqualifiers

Domains and Domains and categoriescategories

at different levelsat different levels

ICFICF

Part 1:Part 1:Functioning and Functioning and

DisabilityDisability

Part 2:Part 2:Contextual Contextual

FactorsFactors

Body Body Functions Functions

and Structuresand Structures

Activities andActivities andParticipationParticipation

Environmental Environmental Factors Factors

Personal Personal FactorsFactors

Change inChange inBodyBody

StructuresStructuresCapacityCapacity PerformancePerformance Facilitator/Facilitator/

BarrierBarrier

Item Item levels:levels:

11stst 22ndnd

33rdrd

44thth

Item Item levels:levels:

11stst 22ndnd

33rdrd

44thth

Item Item levels:levels:

11stst 22ndnd

33rdrd

44thth

Change inChange inBodyBody

FunctionsFunctions

Item Item levels:levels:

11stst 22ndnd

33rdrd

44thth

Item Item levels:levels:

11stst 22ndnd

33rdrd

44thth

How many codes adequately describe a case?

• In ICF, a person’s health state may be assigned an array of codes across the domains of the components of the classification

• In real-life applications of ICF, a set of 3 to 18 codes may be adequate to describe a case with two-level (three-digit) precision

• Generally, the more detailed four-level version is intended for specialist services, whereas the two-level classification can be used for surveys and health outcome evaluation

Source: ICF Annex 2, “Coding Guidelines for ICF”, pg. 220

ICF Checklist and Core Sets

• WHO has developed an ICF Checklist with a short list of body function and body structure codes, Activity and Participation codes and Environmental factor codes

• The German Collaborating Centre has developed “Core Sets” for specific health conditions (see Dr. Gerold Stucki et al)

• NIDRR is sponsoring a core sets project for spinal core injury treatment and rehabilitation

ICF is not……• An assessment or

measurement tool.• It is a framework

and set of classifications on which assessment and measurement tools may be based, and to which they can be mapped.

• This distinction is often misunderstood

ICF and Terminology• A terminology is a formal system of linguistic symbols

that support meaning conveyance in a conceptual domain.

• ICF is considered by many as a major milestone in elaboration and formalization of a human disability and functioning (HDF) ontology (i.e., a representation of things or a way of knowing the essence of things)

• The ICF introduction is an attempt at formalization of HDF ontology

• However, currently ICF, as a classification, lacks formalism and has ambiguity

ICF Adaptations• No country adaptations• No discipline-specific adaptations• However, nature and form of functioning in

children is different from that of adults• Main volume of ICF needs detail for children• Indicators of functional risk factors crucial for

prevention and early intervention • ICF for Children and Youth (ICF-CY) will be

published this year!

NCVHS 2001 Report Findings

• Health care and health policy must go beyond a narrow disease-based focus

• ICF is a promising approach to coding functional status and deserves careful study

• A coding system that specifies the elements of functioning is a reasonable place to start dealing with measurement and interpretation of functional status

NCVHS 2001Report Recommendations

• Functional status information should be reported at appropriate intervals in standardized data sets

• ICF is only viable candidate for a code set to classify functional status

• The concepts and conceptual framework of ICF have promise as a code set for reporting functional status in administrative records and computerized patient records

Consolidated Health Informatics Initiative (CHI)

• Phase II report of CHI Disability Workgroup completed in 2006

• Recommended that ICF be recognized as a CHI-endorsed vocabulary for exchange of health information in the functioning and disability domains in the federal enterprise

• Also recommended inclusion of ICF in NLM’s Unified Medical Language System (UMLS)

• NCVHS concurred with recommendations and submitted them to the Secretary, DHHS

Institute of MedicineFuture of Disability in America• Disability in the form of limited activities and

restricted participation in social life is not an unavoidable result of injury and chronic disease

• Federal agencies are encouraged to adopt ICF as their conceptual framework for disability monitoring

• Use of ICF would help standardize how agencies describe and measure different aspects of disability

WHO-FIC Network Priorities for ICF

• Raising Awareness and Education

• Applications in four areas– Health and Disability Statistics– Outcome measurement for clinical purposes– Administrative and clinical records– Social policy (e.g., disability certification)

WHO-FIC Functioning and Disability Reference Group

• Established in 2006 with eight projects and active North American participation– Principles of use, coding rules and guidelines– ICF Updates– ICF implications for ICD– Measurement and statistical use of ICF– Educational materials (joint project with Education

Committee)– Ethics and ICF– Environmental factors– Terminologies and ICF

North American CCDissemination and Education

• Periodic newsletter from North American Collaborating Center (NACC) http://www.cdc.gov/nchs/about/otheract/icd9/icfhome.htm– Currently over 900 subscribers

• Host annual NACC Conferences on ICF– 2008 (14th Annual) Conference will be last

week of August in Quebec, Canada

• Present papers at annual WHO-FIC Network meeting and other venues

Annual NACC Conferences

• Pre-conference Tutorial in 2004 (10th Conference) “Understanding ICF in the Terminology Spectrum for Human Function and Disability” (Halifax, NS)

• 11th Annual Meeting and tutorial at Mayo Clinic, June 21-24, 2005, “Mapping the Clinical World to ICF” (Rochester, MN)

• 12th Conference on “Living in our Environment: The Promise of ICF” (Vancouver, BC)

• 13th Conference on “Sharing Knowledge through the ICF” (Niagara Falls, NY)

Dissemination and Education:ICF workshops in 2006-2007

• American Congress of Rehabilitation Medicine and American Society of Neurorehabilitation Joint Conference

• Health care professionals in South Africa• Seventh Annual National Rehabilitation Educators’

Conference • National Oral Health Conference • Congress of World Confederation for Physical Therapy• 19th Annual World Conference on Health Promotion and

Education

North American CCDissemination and Education

• Developed ICF tabletop exhibit and brochure for use at meetings

• Published special issue of Health Care Financing Review on classifying functional status, which includes six ICF articles– http://www.cms.hhs.gov/review/03spring/default.asp

• Publication of ICF articles in Disability and Research, Rehabilitation Education, Journal of Visual Impairment and Blindness and other journals

Dissemination and EducationCode ICF

• An interactive web-based training tool, developed by NCHS in collaboration with WHO and Western University

• Provides a general overview of ICF and its multiple applications

• Includes Frequently Asked Questions and coding vignettes

• Will be incorporated into web-based tool for ICD-10 and ICF under development by WHO

Dissemination and Education Host ICDR Subcommittees

• From 2004 – 2006 the Interagency Subcommittee on New Freedom Initiative hosted monthly meetings at DHHS to raise awareness of potential ICF applications

• The Interagency Subcommittee on Disability Statistics features ICF topics at each of its monthly meetings

Dissemination and EducationSeminars and Workshops

• Seminar on ICF and International Collaborative Research (CIRRIE 2003)

• Workshop on ICF and Development of Clinical Measurement Tools ( ICDR 2004)

• Seminar on Best Practices for Surveying People with Disabilities (ICDR 2004)

• Improving Disability Data (ICDR 2006)

Health and Disability Statistics:Use of ICF in Surveys

• Collect data on all levels of functioning or targeted areas

• Combine data on functioning with data on health conditions

• Capture functional status with or without assistive devices and personal assistance

• Ask capacity or performance questions• Examine gap between experience of disabled people

compared to non-disabled• Select questions to fit purpose

CDC Surveys

• National Health Interview Survey (NHIS) and Behavioral Risk Factor Surveillance Survey have included questions on environmental factors and functioning using ICF framework

• NCHS Questionnaire Design Research Lab tested eight sets of disability questions, including WHO survey questions

• SLAITS/Children with Special Health Care Needs (2005-2006) incorporates ICF concepts

• Canadian Participation and Activity Limitation Survey (PALS) uses ICF framework

CDC- supported survey research

• Washington University developed a community health environment checklist based on ICF and surveyed people with mobility limitations about perspectives

• Craig Hospital measured community environmental barriers in Colorado using ICF

International Applications:Health and Disability Statistics

• WHO World Health Survey (WHS) – Designed to compile baseline information on the

health of populations (74 countries)– Intended to build the evidence base to monitor health

systems and whether they are achieving desired goals– Conceptually linked to ICF

• Conceptual framework for defining health (WHS defines as person’s capacity with aids)

• Comprehensive set of domains• Representative item pool for survey questionnaire to

measure health states

International ApplicationsHealth and Disability Statistics

• United Nations Disability Statistics Data Base (surveys and censuses)– Uses ICF (previously ICIDH) for definitions and

common framework• United Nations International Seminar on

Measurement of Disability – June 2001 led to establishment of Washington City Group– Agreed that ICF should be used as framework for

measurement of disability– Includes participation by developed and developing

countries; pre-testing questions for census and surveys– http://www.cdc.gov/nchs/citygroup.htm

Research and Development

• NIDRR Long Range Plan for FY 2005 – 2009 invokes ICF as conceptual guideline for extramural research funding activities.

• Several significant research awards with ICF components have been made– U.S. National Institutes of Health– U.S. Department of Education

• Rehabilitation Research Training Center (RRTC) on Demographics and Statistics – Cornell University

• Center for International Rehabilitation Research Information and Exchange (CIRRIE-2)

– U.S. Centers for Disease Control and Prevention

Research and Development

• American Psychological Association is working with other professional associations to develop Procedural Manual and Guide for Standardized Application: A Manual for Health Professionals

• 10th Annual NACC Meeting on ICF produced a draft North American research agenda for ICF (http://www.nordclass.uu.se/WHOFIC/papers/reykjavik37.pdf)

North AmericanResearch Agenda on ICF

• Identified 45 research priorities• Participants assigned highest priorities:

– Crosswalks of assessment tools and terminologies to ICF

– Development of ICF-based assessment tools– Delineation of Activities and Participation– National and international comparisons– Empirical applications in clinical practice– Research on environmental factors

North AmericanResearch Agenda on ICF

• NCHS funded WHO to crosswalk ICF with major assessment tools (results presented at 13th NACC Conference)

• Negotiations are being finalized to incorporate ICF into UMLS to facilitate future mappings with SNOMED CT and other terminologies

Policy Applications

• ICF used as conceptual framework for disability-related objectives in Healthy People 2010

• Use ICF for measuring progress of disability-related objectives in Healthy People 2020

• Potential use of ICF framework in strategic review of rehabilitation services and in disability income replacement programs (Canada)

Policy applications

• Several NIDRR-funded projects, including the RRTC at Cornell University, feature investigators interested in federal policy applications of the ICF

• Universities and professional associations are incorporating ICF into teaching of students and rehabilitation professions– e.g., ICF is component of Preferred Practice

Patterns for Speech-Language Pathology

ICF Implementation • Promote ICF and ICF-CY use in WHO-FIC

priority areas • Implement ICF as conceptual model and

classification system for – Disability monitoring systems– Electronic Health Records– Personal Health Records– Health Information Exchanges– Quality Indicators– Pay for Performance– Eliminating health disparities

ICF Implementation • Conduct research recommended by NCVHS,

NACC Research Agenda and CHI• Promote collection of functional status in health

records• Code functional status information consistently• Map SNOMED-CT to ICF; identify gaps• Crosswalk assessment tools to ICF

– Identify gaps– Standardize assessment tools in relation to ICF codes

for clinical specialties• Develop new assessment tools based on ICF

ICF Implementation

• Contribute to guidelines development and updating process for ICF through FDRG

• Improve ICF as a classification– Clarify operational definitions of A&P*– Develop Personal Factors classification*– Continue development of Environmental Factors*– Enhance content coverage– Clarify and standardize qualifiers

* (see Box 2.5 of IOM report)

                        

                  

Challenges

• Who should report functional status – patient, provider or both?

• How often should it be collected?• Should it be measured with or without assistive

devices/environmental factors?• How should consumers be involved? • Demonstrate value in relation to costs of

collection (e.g., time, coding)• Consider incentives for recording information