Volume 3, Number 2, 2005

Editorial Board Classification and terminology, what is in a name? Dr Marijke W. de Kleijn-de Vrankrijker Drs Huib Ten Napel The WHO-FIC Network meeting in October 2005 in Tokyo showed five Dr Willem M. Hirs projects on linking between WHO classifications and clinical terminologies: Realization and Design 1. R. Jakob, C. Çelik. Linkages between the ICD and terminologies A.C. Alta, Studio RIVM 2. K. Giannangelo & S. Fenton. Mapping: Creating the Terminology and Classification Published by Connection WHO-FIC Collaborating Centre in the 3. S. Zaiss, N. Hanser, N. Baerlecken. Comparison of ICHI and CCAM Basic Coding System Netherlands. 4. J.M. Rodrigues, A. Rector, P.E. Zanstra, R. Baud, J. Rogers, A.M. Rassinoux, S. Schultz, B. Responsibility for the information given Trombert, H. ten Napel, L. Clavel, E.J. vander Haring, C. Mateùs. Supporting WHO remains with the persons indicated. Classifications with GALEN tools Material from the Newsletter may be reproduced provided due 5. P.E. Zanstra, J..M. Rodrigues, A. Rector, M. Virtanen, G. Surjan, B. Üstün, P. Lewalle. acknowledgement is given. SemanticHealth. A semantic interoperability deployment and research roadmap; see p. 10 M. Virtanen chaired also a round table discussion with terminology experts, such Address WHO-FIC Collaborating Centre in the as C. Galinsky (Infoterm), J.M. Rodrigues (from the circle of Galen), K. Netherlands Spackman (from the circle of Snomed). Department for Public Health Forecasting In the summary report of the Network meeting it was stated that - "thanks to the National Institute of Public Health and the developments in informatics today - it is possible to link classifications and Environment (RIVM), P.O.Box 1, 3720 BA Bilthoven, The Netherlands. terminologies to formalize the representation of knowledge in classifications. The Telephone: 0031 30 274 2039/4276 linking of classifications and terminologies is essential to enable IT infrastructure Fax: 0031 30 274 4450 for electronic health records. The linking can be done in various ways including Website: www.rivm.nl/who-fic simple tables of correspondence or indexing, and further improved ways of E-mail secretariate: [email protected] ISSN: 1388-5138 knowledge representation such as in terms of essential features of diseases or decision making rules used in practice." This statement, however, is Contents questionable. Project reports give the impression that the linking is not an easy Classification and terminology 1 task, neither conceptually (1-3), nor ontologically (4) or organizationally (5). Editorial 2 For example, the first report conclude: International organisations - WHO-FIC Network meeting 2005 2 - The majority of the terms currently in use in the diagnostic definitions of the - ICECI 5 ICD-10 category F32 Depressive episode, can be linked to the terms in - Abbreviations and Acronyms 5 SNOMED-CT, however - Additional FAQ's on WHO website? 7 - Such linkages require considerable intellectual work; - The ICF-CY 9 - An automated linking or an automated verification of linkages between ICD- - ClaML 10 - Semantic Health project 10 10 and terminologies as SNOMED-CT is not feasible, at present; - Photo Contest 11 - This situation could be improved imposing a strict terminological control for FIC around the World the definitions in the classification and adding terms to SNOMED-CT. Australia Bedirhan Üstün of the WHO CAT team illustrated as the core of the linking - AIHW ICF reports 11 - FRHOM 12 problem F32.0 mild depressive disorder: two or three of a range of possible Belgium symptoms have to be present for coding F32.0. 17 Snomed codes are needed for - ICF -ICPC Workshop in Ghent 12 11 symptoms, and even than not all symptoms have got a code (see sheet page 2). Ireland Furthermore, 'mild depressive disorders' might be assessed by different sets of - Ethical Framework for ICF sufficient? 13 symptoms. And a psychiater can also avoid that overall title although a set of two Netherlands - ICF based Surveys and Statistics 15 symptoms are applicable. Most terminologists would dislike such a coding - Emancipation for people with disability 16 practice. Naming a client's health problem by a class is what classifications do; it differs in principle from describing a client's symptoms without an overall title. 1 Newsletter on the WHO-FIC, Volume 3, Number 2, 2005

the Netherlands we already started a Rewriting ICD Using SNOMED similar activity for our national level. We really believe that the two should example of Depressive Disorder F32.0 be seen together: distinguished but not separated. A. Low mood {41006004} An other remarkable issue is the XML Loss of interest {417523004 } Schema based on ClaML developed Low energy {248274002} by the Electronic Tools Committee, which should be adopted as the 1. Appetite (decrease, increase) {64379006, 72405004} B. standard for exchange of WHO-FIC 2. Body weight (decrease, increase) {89362005, 8943002} classifications. A contribution by Huib 3. Sleep (decrease, increase) {59050008, 77692006} Ten Napel is to be found on page 10. 4. Psychomotor (decrease, increase) {398991009, 47295007} Persons who are not involved in 5. Libido loss {8357008} classifications are confronted with a 6. Low self esteem {286647002, 162220005} lot of unknown acronyms and questions. In order to prevent this kind 7. Guilt, self blame {7571003} of confusion the Education Committee 8. Thoughts of death … prepared a document which is 9. Suicide Ideation {102911000, 6471006} included in this newsletter. We hope that this appears to be of help to find Sheet presented by Bedirhan Üstün. the way in the chaos. If certain It was noted (cf.. Executive summary) WHO Collaborating Centres will be relevant acronyms or specific in the round table that "the theory of asked to nominate experts to serve on a questions and their answers are terminology, confirmed by terminology reference group. The missing, please send them to the chair observations from pilot tests, indicates heads of the German and Nordic of the committee, Marjorie Greenberg that it is rather the encapsulated Centre will work with WHO CAT to (mailto:[email protected]). knowledge that could be captured for establish this group." As always there are several mapping purposes. Only then can it be For information: contributions relating to the ICF ascertained that the concepts are [email protected] included in this newsletter. A captured uniquely and specifically. surprising paper is contributed by This would also provide a stable, Catherine Sykes on behalf of the language-independent basis for Editorial Australian ICF team. The team implementation in other languages One of the major events last year was developed a kind of intermediate tool than English with increased the annual meeting of the WHO-FIC for exchange of information based on compatibility. The magnitude of the network in Tokyo last October. Our different assessment tools. We are task calls for a formal representation of Japanese host treated us with an interested to see the results of the such knowledge that would allow impressive and interesting meeting testing. See page 12. efficient and reliable machine environment which contributed to the Another interesting contribution processing." quality and results of the meeting. Of relates to the ethical framework of the It was concluded in the round table that course all classifications of the WHO- ICF prepared by Donal McAnaney "WHO could take lead role to FIC have been discussed and we refer from Ireland. This issue took a lot of disseminate and organize health the interested reader to the WHO attention at the time of the ICIDH information standards, take a proactive website in order to find details, papers, revision but lost attention during the stance for charting the universe of presentations and posters: last few years. We think it is time to health information standards and www.who.int/classifications/network/m consider this issue again and hope this establish mechanism of involving eeting2005. A short summary of the can be a topic for discussion during member states, multiple stakeholders highlights of the meeting is presented the next annual WHO-FIC meeting. and use mechanisms established by in this newsletter on page 3-5. During the Tokyo meeting an ISO, CEN and others.... Classifications A rather new phenomenon in the operational plan has been made for the and clinical terminologies are not annual meeting agenda was a round implementation of the ICF within the alternatives but complementary to each table discussion on the relation priority areas (surveys/censuses, other and should be used in between classifications and clinical and administrative conjunction with appropriate linkages terminology. Willem Hirs summarized applications, health outcome, policy). (also known as mappings) based on this interesting discussion, to be found Regarding the International existing scientific knowledge. on page 1-2 of this newsletter. At Classification of Technical Aids (new international level a terminology name: Assistive products for persons reference group will be established. In with disability) ISO9999 we can inform Newsletter on the WHO-FIC, Volume 3, Number 2, 2005 2

you that the new version will be and do not necessarily represent distributed by ISO and CEN in due WHO's or WHO-FIC Network's views. time for final voting by member states. The meeting served to review all A working group developed crosswalks elements of the WHO-FIC Network between ISO9999 and ICF. As soon as and its Committees. The Linkages possible a document containing these between Terminologies and crosswalks will be available for Classifications (see p. 1, 2); Case mix comments through the website of the Groupings, ICD revision process and Dutch WHO-FIC Collaborating ICF applications in multiple sectors Centre. received particular attention. In the area of ICPC and ICF action is The executive summary of the meeting taken in order to produce a mapping is used, giving you the highlights of between both classifications. Based on the meeting. Reference is made to the analysis it is to be seen whether the several places in this newsletter where ICF can be (partly) included in specific agenda items are more fully ICPC-3. See the contribution from discussed. For Abreviations and Belgium, page 12 in this newsletter. Acronyms throughout this newsletter, A questionnaire about the use of the Our Japanese host, Kenji Shuto, and his wife developed by the Education ICECI will be send to involved Committee, see page 5. persons. It is intended to make the Implementation of ICD-10 results of the survey available through A database of the levels of our website. The questionnaire International implementation and a Roster of (possibly after improvement based on Organizations Experts, to be maintained by WHO- the first replies) will be posted on the CAT, will be available at the WHO website as well in order to enable Classifications website at the ICECI users to share their beginning of 2006. information. WHO-FIC Network The already existing training materials At the start of this new year we wish on ICD from the Brazilian centre and the readers a prosperous 2006 with a others, and a training tool to be set up lot of interesting and successful by WHO-CAT by October 2006 based classification experiences. We hope on the content of Tendon, will be you will enjoy this newsletter and we compiled by April 2007. invite you to send us your information to share with the rest of the WHO-FIC The Mortality Reference Group world. Sharing information is (MRG) will work on the improvement important. That is why we prepare this of assessment of ICD implementation newsletter and why the Education for mortality by refining rules and Committee and Implementation providing assistance. Committee started a pilot on the Updates to ICD-10 structural collection and distribution The Update and Revision Committee on information relating to ICF (URC) reached consensus on 36 implementation, educational tools and submissions prior to the meeting, 3 electronic tools. This is also the reason proposals identified errata in the paper why the North American Collaborating version of second edition. The Centre organizes annual ICF meetings Tokyo, 16-22 October The meeting was attended by 88 approved changes, to be implemented during summertime and why the in 2007, will be posted on the WHO Australian Collaborating Centre international participants from 7 WHO Collaborating Centres and website at the beginning of 2006. It is planned to organize an ICF conference decided that the existing ‘paper based’ at the beginning of February 2006. representatives from Ministries of Health or National Statistical Bureaus update mechanisms will be replaced by We are looking forward to your of over all 16 countries. Agenda, List a ‘web based’ system that is under messages! of participants , and Papers presented development at WHO. in the conference, are available at With a view on the situation for avian http://www.who.int/classifications/. flu, code J09 Influenza due to Avian The views expressed in these papers influenza virus, has been created and are those of the named authors only can be used immediately. It will be added in the version 2006 of ICD-10. Newsletter on the WHO-FIC, Volume 3, Number 2, 2005 3

The MRG assessed that the 1. Scientific Stream International Classification of programming of an international tool It will include evidence based Functioning, Disability and Health (IRIS) for automated coding based on reviews, surveys, validation studies, The Implementation Committee MICAR and ACME progresses. This add-on protocols for existing studies endorsed the application of ICF in collaborative work of the INSERM and meta analyses. Health and Disability statistics and had (France), the Sociealstyrelsen 2. Clinical Stream a special debate on the use of ICF by (Sweden), NCHS (USA), DIMDI It will ensure clinical utility, linkage the Washington Group (WG) on (German) and Statistics Hungary will to patient reports and to treatment Disability Statistics, see for more be available for testing, probably by response and deal with phenotypes information: ICF based Surveys and August 2006. Methods for the manual (gene to behaviour specs). Statistics, p. 15. selection of the underlying cause of 3. Public Health Stream In support of ICF implementation the death according to the ACME/IRIS It will assess the impact on health meeting recommended an ICF algorithm will be developed. systems; service delivery, resource knowledge network for sharing management, reimbursement, The Education Committee proposed a information on ICF implementation, accounting, information technology number of frequently asked questions uses, educational materials and efforts. applications and the interactions with to be published on the WHO-FIC The final version of the information terminology. website, see page 7. The FAQ’s relate sharing framework will be hosted on Five pilot areas were presented by especially to the development of the the WHO FIC website with linkages to collaborating centres and WHO CAT International Training and Certification a mirror website in each of the as revision areas: Program for ICD-10 Mortality and Collaborating Centres. Morbidity coders. − Cystic Fibrosis (North America) For the ICF Children and Youth The Work group on Hospital Data will − Diabetes (Australia) version, see p. 9. continue its work as part of the new − Lymphomas (Germany) The meeting recommended adapting Morbidity Reference Group. The − External Causes (Nordic Centre) the WHO FIC update software origin of the Work group was the EU − Mental Health (CAT) platform for ICF. The platform will be Hospital Data Project (HDP) aimed at The centres in charge will report on hosted on the WHO FIC website. All improving hospital statistics with the the results of further activities in the ICF updated related information help of definitions and shortlists. It will direction of proposals at the Network generated from implementation be continued as the EU HDP phase 2 Meeting 2006. projects should be collected through under the leadership of Prismant in this common mechanism and will be The Netherlands. Partly through efforts Specifically in the area of external discussed by a. (new) Functional, from the Work group several major causes, cooperation with WHO and Disability Reference Group (FDRG). producers of hospital discharge CCs is sought. In a first meeting the statistics have now agreed to use the extent of the work, its overwhelming International Classification of HDP shortlist for diagnoses with only implication on the other chapters of Health Interventions (ICHI) minor agreed modifications, presently ICD and the need for cooperation with WHO CAT arranged for extended field known as the EUROSTAT-OECD- the ICECI as well as with experts in tests of ICHI with supporting WHO hospital morbidity shortlist. The the field of pharmaco-vigilance, questionnaires. The meeting took note Work group recommends the list to be substance safety and patient safety of the current status of the beta field adopted by WHO as a shortlist for were identified. testing. More than 250 individuals tabulation with the title International In the area of Mental Health (WHO- have expressed interest to participate. Shortlist for Hospital Morbidity CAT) the work has started together They come from some 69 countries. Tabulation (ISHMT), to be published with support of the World Psychiatric Their geographical distribution, on the WHO website. Association and the International however, is uneven. The majority of the reactions came from countries ICD Revision Union of Psychological Sciences. already having a national intervention WHO has presented the structure for Derived and related classifications classification. There is a need to the revision process for the creation of Further work within the WHO/WICC mobilise support, especially in ICD-11. The ICD update and revision group was reviewed in terms of Member States not having such an processes will proceed in a continuous alignment between WHO-FIC intervention classification of their own, manner supporting each other. URC reference classifications (ICD, ICF, to ensure that ICHI meets the needs of will be the overall oversight and ICHI) and the WONCA the health authorities. Translations of mechanism to oversee the coordination International Classification of Primary ICHI into French and Spanish are of work in different chapters. Care (ICPC) which is under revision. being finalized. This will provide The revision work will be provided by The Dutch Collaborating Centre WHO with language versions required three main streams: reported on the task of the alignment for communication with countries between ICF and ICPC, see p. 12 . through official channels.

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In parallel, content, scope and nature of explored the recommended tool for In January 2006 a questionnaire will be ICHI have been scrutinized using WHO-FIC classifications. sent to known users of ICECI. This various methods, in order to assess the will lead to insight in who is using Organizational affairs intrinsic value and internal consistency ICECI and how ICECI is being used. The Network meeting updated its of the classification. It was recognized This information will be made Business plan and Strategy and Work that efforts in that direction should available at the ICECI-website in order Plan that will be evaluated by the usefully inform the development of the to improve the exchange of Planning Committee and external methodology to be applied to other experiences. advisors in May 2006. classifications, especially the 11th In June 2005 a meeting was organised revision of ICD. That would also The Network Structure has 5 standing on the revision of ICD-10 Chapter XX strengthen the role of classifications as committees (Implementation, Update on external causes. It was concluded building blocks of health information and Revision, Education, Family that ICECI will provide input for systems as they could benefit, through Development, and Electronic Tools). improving this part of ICD within a proper conceptual mappings, from This committee structure reflects the formal procedure. clinical reporting systems such as the sectors of work in the FIC and form a During the 8th World Conference on EHR, which in turn require vertical structure, each one covering all Injury Prevention and Safety standardized terminologies (see further family members. In addition to the Promotion in Durban the use of ICECI p 1, 2. existing and successful Mortality will be promoted in the WHO booth Reference Group a few new working and by presentations of ICECI-users. WHO-FIC and other fields groups were suggested for specific The Family of International topics as horizontal structures across For information: Classifications is bounded by other the fields covered by the committee Dr Saakje Mulder systems, such as clinical terminologies [email protected] structure: Morbidity Reference Group, (more detailed) and case mix systems Functioning and Disability Reference (less detailed), that may use Group, Terminology Reference Group. international classifications as a Abbreviations and Acronyms reference. The 2005 Network meeting On behalf of the French Collaborating Term Meaning organized two round table discussions: Centre and the Eastern Mediterranean one on terminologies (see p 1, 2) and Regional Office (EMRO) and Tunisian ABS Australian Bureau of Statistics ACBA Australian Coding Benchmark one on case mix systems. WR WHO/CAT informed the meeting Audit that Tunisia agreed to host the next The round table with international case ACCS Automated Cause Coding meeting of the WHO-FIC Network Software mix experts discussed the vision of from 22-28th October 2006. ACHI Australian Classification of international case mix groupings and Health Interventions (Vols. 3 and the role of WHO and the WHO-FIC For information: 4 of ICD-10-AM) Network, see further the Executive Robert Jakob, WHO CAT team, Geneva ACME Automated Classification of Medical Entities Summary of the Network meeting at [email protected] AFRO Regional Office for Africa of the http://www.who.int/classifications/. World Health Organization AHIMA American Health Information Electronic tools ICECI developments Management Association The XML Schema based on ClaML The next version of the International AIHW Australian Institute of Health and developed by the Electronic Tools Classification of External Causes of Welfare AMRO Regional Office for the Americas Committee should be adopted as the Injuries (ICECI) will be published in standard for the exchange of WHO- of the World Health Organization 2006, including minor changes like ATC/DDD Anatomical Therapeutic FIC classifications as of this meeting. correction of typos, inclusion and Chemical Classification System WHO-FIC centres that use their own exclusion statements. The current with Defined Daily Doses classification maintenance systems are ICECI version is available in English, CAM Complementary and Alternative encouraged to add functionality for the Medicine Spanish and French. All relevant CAP College of American Pathologists import and export of classifications ICECI documents are available on the CAT Classifications and Terminology according to this XML Schema. WHO website (www.iceci.org). In 2006 the section of WHO Headquarters, and DIMDI should share the ICECI website will be hosted by the Secretariat to the WHO-FIC Network development costs for the maintenance Dutch WHO Collaborating Centre for and development tool for WHO-FIC CBCD Centro Brasileiro de Classificação the Family of International de Doenças (Brazilian classifications and make it available to Classification and implemented in their Collaborating Center) the WHO-FIC centres for free. WHO- website (the current ICECI-website CCAM Classification Commune des FIC centres not using their own will be linked to this website). At the Actes Medicaux classification maintenance tools should CCI Canadian Classification of Health same the ICECI-part of the website Interventions not start the development of their own will be upgraded. CCI La Classification Canadienne des maintenance tool without having Interventions

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CCSA Clinical Coders’ Society of EBM Evidence-based Medicine ICD-10-PCS International Classification of America EBP Evidence-based Practice Diseases, Tenth Revision, CDC Centers for Disease Control and EC Education Committee (WHO- Procedural Coding System (USA Prevention (USA) FIC) – not yet in use) CEMECE Centro Mexicano para la EDI Electronic data interchange ICD-10-XM International Statistical Clasificacion de Enfermedades EIP Evidence and Information for Classification of Diseases and (Mexican Center for Policy (WHO cluster) Related Health Problems, 10th Classification of Diseases) EMRO Regional Office for Eastern Revision, International Clinical CEN European Committee for Mediterranean of the World Modification (under discussion) Standardization Health Organization ICD-DA-3 Application of the ICD for CEVECE Centro Venezolano para la ETC Electronic Tools Committee Dentistry and Stomatology, 3rd Clasificación de Enfermedades (WHO-FIC) Edition (Venezuelan Center for EU-HDP European Union Hospital Data ICD-Forum Group for discussions by e-mail Classification of Diseases) Project of issues related to mortality and CHIMA Canadian Health Information EURO Regional Office for Europe of the morbidity coding and related Management Association World Health Organization themes (in English) CID (CID-10) Classificação Estatística FAQ Frequently asked questions ICD-NA International Classification of Internacional de Doenças e FDC Family Development Committee Diseases, Neurology Application Problemas Relacionados à Saúde (WHO-FIC) ICD-O-2 or 3 ICD for Oncology, 2nd Edition; CID-O-3 Classificação Internacional de FIC Family of International 0-3, 3rd Edition Doenças para Oncologia – Classifications ICE International Collaborative Effort Terceira Edição Forum-CIE Group for discussions by e-mail [on automating mortality CIE Clasificación Internacional de of issues related to mortality and statistics, on Injury Statistics] Enfermedades morbidity coding and related sponsored by NCHS CIE-10 Clasificación Internacional de themes (in Spanish) ICECI International Classification of Enfermedades y Problemas HIMAA Health Information Management External Causes of Injuries Relacionados con la Salud Association of Australia ICF International Classification of CIE-O-3 Clasificación Internacional de HL7 Health Level Seven- one of Functioning, Disability and Enfermedades para Oncología – several American National Health Tercera Edición Standards Institute (ANSI) - ICF-CY International Classification of CIE-9-MC Clasificación Internacional de accredited Standards Developing Functioning, Disability and Enfermedades, 9a Revisión, Organizations (SDOs) operating Health, Children and Youth Modificación Clínica (Spanish in the healthcare arena. Health version version of ICD-9-CM) Level Seven’s domain is clinical ICHI International Classification of CIF Clasificación Internacional del and administrative data. Health Interventions Funcionamiento, de la HOC Heads of WHO Collaborating ICIDH International Classification of Discapacidad y de la Salud, Centers for the Family of Impairments, Disabilities, and Classification internationale du International Classifications Handicaps (Revised in 2001 and fonctionnement, du handicap et HRG Healthcare Resource Group – published as International de la santé, Classificação used in the UK for casemix Classification of functioning, International de Funcionalidade, grouping Disability and Health) Incapacidade e Saúde IARC International Agency for ICIS Institut canadien d’information CIHI Canadian Institute for Health Research on Cancer sur la santé (also CIHI) Information IC Implementation Committee ICPC International Classification of CIM (CIM-10) Classification statistique (WHO-FIC) Primary Care internationale des maladies et des ICD International Classification of ICPM International Classification of problèmes de santé connexes Diseases Procedures in Medicine (WHO CIM-10-CA Classification statistique ICD-9-CM International Classification of 1978) internationale des maladies et des Diseases, Ninth Revision, Clinical IFHRO International Federation of Health problèmes de santé connexes Modification (USA) Records Organizations dixieme version, Canada ICD-10 International Statistical IHRIM Institute of Health Record and CLaML Classification mark-up language Classification of Diseases and Information Management (UK) CPT Current Procedural Terminology Related Health Problems, Tenth IMIA International Medical Informatics (U.S.) Revision Association CRAES Comité Regional Asesor en ICD-10-AM International Statistical IND International Nomenclature of Estadísticas de Salud (PAHO Classification of Diseases and Diseases (Not currently Regional Advisory Committee on Related Health Problems, Tenth maintained) Health Statistics) Revision, Australian Modification INSERM Institut National de la Santé et de CTNERHI Centre Technique National ICD-10-CA International Statistical la Recherche Medicale d’Ėtudes et de Recherches sur les Classification of Diseases and INTERCOD Computer-assisted program for Handicaps et les Inadaptations Related Health Problems, Tenth self-instruction for coding (France) Revision, Canada mortality and morbidity with DATASUS Departamento de Informática do ICD-10-CM International Classification of ICD-10 developed by the Sistema Único de Saúde (Brazil) Diseases, Tenth Revision, Mexican Center for the DIMDI Deutsches Institut für Clinical Modification (USA- not classification of Diseases and Medizinische Dokumentation und yet in use) PAHO. Information ICD-10-GM International Classification of ISO International Organization for DPI Disabled Peoples International Diseases and Related Health Standardization DRG Diagnosis-Related Groups Problems, Tenth Revision, ISO 9999 Technical aids for persons with DSM-IV Diagnostic and Statistical Manual German Modification disabilities. Classification and of Mental Disorders – 4th Edition terminology

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MDG Millennium Development Goals SEARO Regional Office for South East MedDRA Medical Dictionary for Asia of the World Health Regulatory Activities Organization MF Mortality Forum - Group for SNOMED Systematized Nomenclature of discussions by e-mail of issues Medicine related to mortality coding (in SNOMED CT SNOMED Clinical Terms English) SNOMED RT SNOMED Reference MICAR Mortality Medical Indexing, Terminology Classification and Retrieval STC Statistics Canada MIKADO Swedish automated coding STYX French automated coding system system TENDON Computer-based training package MMCB Mortality Medical Classification for ICD-10 produced by the Branch, NCHS WHO Collaborating Centre for Marjorie Greenberg addressing to the audience MMDS Mortality Medical Data System the Classification of Diseases, in Tokyo (US automated coding system) London MRG Mortality Reference Group TRANSAX Translation of axes – used to Additional FAQ's on WHO's (WHO-FIC) create data appropriate for either NACC North American Collaborating record-based analysis or person- Classifications website? Center based analysis FAQ's on ICD, ICF and purchasing, NCCH National Centre for Classification UC or UCOD Underlying cause of death in Health (Australia) UMLS Unified Medical Language permissions, copyright, licences and NCECI NOMESCO Classification of System translations are published on External Causes of Injuries UN United Nations www.who.int/classifications//help/en/. NCHS National Center for Health URC Update and Revision Committee The Education Committee of the Statistics (USA) (WHO-FIC) WHO-FIC Network suggested on the NCSP NOMESCO Classification of WCPT World Confederation for Physical Surgical Procedures Therapy Collaborative Workspace a number of NHS National Health Service (UK) WFOT World Federation of Occupational additonal FAQ's NIC National Interventions Therapists − on Collaborating Centres (1), Classification – currently under WHO World Health Organization − on Committees (such as 2), development but will ultimately WHO CAT World Health Organization replace OPCS-4 for surgical Classification, Assessment, − on relationships with other procedures and intervention for Surveys and Terminology organizations (such as 3), the UK WHO CC World Health Organization − on the ICD International Training NLM National Library of Medicine Collaborating Center (U.S.) WHO-FIC World Health Organization and Certification Program (4-10), NOMESCO Nordic Medico-Statistical Family of International − on ICD-10 (11, 12) Committee Classifications − on ICF (13) and OECD Organization for Economic WICC WONCA International − on Terminologies (14). Cooperation and Development Classification Committee OMS Organisation mondiale de la WONCA World Organization of National By publishing these FAQ's in the Santé, Organización Mundial de Colleges, Academies and Newsletter, people outside the la Salud, Organização Mundial da Academic Associations of workspace are kindly invited to Saúde General Practitioners/Family participate in the development of this ONS Office for National Statistics Physicians (The short name is (UK) Formed in 1996 by a World Organization of Family kind of information. merger of the Central Statistical Doctors.) 1. What are the WHO Collaborating Office (CSO) and the Office of WPA World Psychiatric Association Population Censuses & Surveys WPRO Regional Office for Western Centres for the Family of International (OPCS) Pacific of the World Health Classifications? OPCS-4 The Office of Population Organization A WHO collaborating centre is a Censuses and Surveys’ XML Extensible Mark-up Language national institution designated by the Classification of Surgical YLD Years of life lived with disability Director-General of the World Health Operations 4th Revision. The YLL Years of life lost through current surgical procedures disability, Years of life lost Organization to form part of an classification used in the UK international collaborative network OPS (OPAS) Organization panaméricaine de la For information: carrying out activities to support Santé, Organización Marjorie S. Greenberg, chair of the WHO’s mandate for work on Panamericana de la Salud, Education Committee, Organização Pan-Americana da WHO-FIC CC for North America National international health issues through Saúde Centre for Health Statistics Centre for structured programs and priorities. The PAHO Pan American Health Disease Control and Prevention WHO Collaborating Centres for the Organization 3311 Toledo Road Room 2413 20782 Family of International Classifications RI Rehabilitation International Hyattsville, MD USA (FIC) are an international network of RIVM National Institute of Public Health and the Environment Tel: +1 301 458 4245 expert centres in health classifications, (Netherlands) E-mail: [email protected] coding, and terminology development. RUTENDON Computer-based ICD-10 coding Click on the following link for more training, in Russian information SCB Seleção de causa básica (automated system, Brazil)

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www.who.int/classifications/network/c for issuing the first international that represent broad domains of ollaborating/en/index.html. certificates is 2007. For more content. Each category contains information click on: specific content areas that training 2. What is the WHO-FIC Education http://www.cdc.gov/nchs/about/otherac materials are expected to address. The Committee? t/icd9/nacc_ed_committee.htm curricula’s purpose is to provide a The WHO-FIC Education Committee basis for ICD coder education for all (EC) is one of the six WHO-FIC 5. Why has the international training countries, thereby providing Committees. This committee assists and certification program been appropriate learning experiences that and advices WHO and the WHO-FIC developed? result in the development of the Network in improving the level and The WHO-FIC Collaborating Centres competencies necessary for entry-level quality of use of the WHO Family of and the International Federation of mortality and morbidity coding International Classifications in member Health Records Organizations practice. The curricula are an essential states by developing an integrated (IFHRO) have been working together element to the construction of training educational strategy. The Committee since 2000 to develop an international packages that will contribute to more focuses on raising awareness of the training and certification program that standardized training and coding classifications and their applications, will improve the quality of mortality practice. standardized training and educational and morbidity data and the status of activities for users of the classifications ICD coders. It is envisioned that this 8. What are the approved training and methods for assessment of coding program will also help provide coded packages? ability and knowledge. Over the last data to users for decision-making, The approved training packages are a several years the EC has been resource allocation, and health set of materials from multiple sources responsible for the development of the planning. Receipt of the certificate that have been approved and meet the ICD-10 international training and demonstrates achievement of coding requirements of the core curricula. certification program in collaboration competency within an international Included in the core training packages with the International Federation of framework. Comparable, high quality are comprehensive assessments for Health Records Organizations. Click data ultimately leads to improvement each knowledge cluster in the core on the following links for more in the health of the world’s population. curricula. These packages are what information: approved trainers or nationally 6. How is an international certificate http://www.who.int/classifications/net recognized educational institutions obtained? work/collaborating/en/index.html or would use when conducting ICD-10 The specific process to receive an www.cdc.gov/nchs/about/otheract/icd9 training. international certificate is under /nacc_ed_committee.htm development. Check back in the latter 9. How do educational materials 3. What is the relationship between part of 2005 for more information. become approved as a module of the WHO and IFHRO? Will the requirements for obtaining the training package? The International Federation of Health international certificate be the same for Providers of current training programs Records Organizations (IFHRO) is a a practicing coder and a new coder? on mortality and morbidity coding can nongovernmental organization (NGO) The specific process for practicing apply to have their educational in official relations with the World coders to receive the international materials assessed by the joint WHO- Health Organization (WHO). Click on certificate has not been fully FIC –IFHRO partnership. Approval the following link for more developed. It is anticipated a self- will give coders confidence that their information: http://www.ifhro.org/ assessment and exam will be made coding education program meets the available within a specified time period benchmarks set by the Education 4.What is the ICD-10 international to practicing coders who have not Committee and IFHRO for high training and certification program? taken an approved training package but quality teaching and learning. This program encompasses would like to qualify for the Submission of ICD-10 training international standard ICD-10 curricula international certificate. Subject to materials for consideration may be sent for the teaching of ICD-10 morbidity satisfactory completion they too would to the American Health Information and mortality coders, compilation of receive the international certificate. Management Association, Attention: “gold standard” core modular Check back in the latter part of 2005 WHO-FIC/IFHRO, 233 North approved training packages from for more information. Michigan Avenue, Suite 2150, multiple sources, and a trainer Chicago, Illinois, 60601, USA. approval and coder certificate program. 7. What are the core curricula for the The final outcome of this program ICD-10 coding training and 10. How does someone become an would be an international training and certification program? approved trainer? certification program for ICD coders The mortality and morbidity core Being a member of a group of with an expected effect of higher curricula identify the professional approved trainers means you have met quality coded data and thus more educational requirements for coder certain qualifications and are using a accurate international and national education. The curricula are comprised “gold standard” core modular training comparability studies. The target date of categories, or knowledge clusters, package. The process for trainer Newsletter on the WHO-FIC, Volume 3, Number 2, 2005 8

approval is under development. Check WHO-FIC CC for North America National research findings; (5) field trial results; back in the latter part of 2005 for more Centre for Health Statistics Centre for (6) findings from related ICF/ICF-CY information. Disease Control and Prevention implementation studies and (7) 3311 Toledo Road Room 2413 20782 publications of the work group. 11. Why is ICD-10 better than ICD-9? Hyattsville, MD USA ICD-10 contains an increased number Tel: +1 301 458 4245 The development activities of the of codes and categories that allow for a E-mail: [email protected] WHO work group have been carried more specific and accurate out over the period 2002 to 2005 and representation of current diseases and The ICF-CY: a derived classification supported by the National Center on related health problems. It also is more for children and youth Birth Defects and Developmental consistent with current clinical The International Classification of Disabilities of the Centers for Disease terminology. Functioning, Disability and Health for Control, USA. Drawing on the guidelines in Annex 8 of the ICF, the 12. Is switching to ICD-10 really Children and Youth (ICF-CY) is version for children and youth was necessary? presently in its final stage of designed to be completely consistent Yes. Switching to ICD-10 improves development. with the organization and structure of the quality of health statistics and The ICF for children and youth is a the main volume. healthcare data and maintains derived classification to extend worldwide clinical data comparability. coverage of the main ICF volume for The first draft of the ICF-CY was The longer one continues to use an documentation of body functioning, delivered to WHO officials at the earlier version of ICD, the more structures, disability and health of WHO-FIC meeting in Cologne in the difficult it becomes to compile and children in the first two decades of life. fall of 2003. This draft version of the share accurate disease and mortality As a derived classification, the ICF- ICF-CY was placed on the WHO data at a time when such global data CY is designed to provide a common website in the summer of 2004 for sharing is critical for public health. language of documentation that can be field trials. Responses to surveys and clinical questionnaires were provided 13. What are some sources for used across disciplines, sectors and by individuals and programs in various information about current and countries to advance services, policy countries around the world. Field trial potential ICF applications? and research on behalf of children and findings and evaluation by the work The Australian Institute of Health and youth. The second draft of the ICF-CY group Welfare has developed a Users Guide. provides content to document the It can be accessed free of charge at characteristics of children and youth of served as the basis for preparing the http://www.aihw.gov.au/publications/i importance for promoting their health, second draft of the ICF-CY which was ndex.cfm/title/9329. The NACC ICF growth and development. submitted to WHO in June, 2005. This Clearinghouse Newsletters are The need: The development of the second draft is being placed on the available at version for children and youth was WHO website and will remain there http://www.cdc.gov/nchs/about/otherac carried out in response to the request for six months to secure comments and t/icd9/icfactivities.htm. by WHO for a version of the ICF for suggestions from around the world. 14. Can SNOMED-CT® be used for universal use with children in health WHO CAT has started the review coding instead of ICD-10? and health related sectors. The need for process which will involve the WHO The two systems are designed for a version for children and youth was FIC CCs and selected experts in areas different uses in the healthcare system. based on recognition that the first two of major changes. Subject to the result ICD-10 is needed to facilitate retrieval decades of life consist of rapid growth of the review process of ICF CY the of coded data at the desired level of and significant changes in physical, classification is recommended to be detail depending on the purposes for social and psychological development. accepted as a WHO-FIC derived which the data are being used. Further, the manifestations of disability classification. SNOMED CT® is designed to work in and chronic conditions in childhood an electronic health record rather than and adolescence are different in nature, The goal is for the ICF-CY to be in the paper-based health record intensity and impact than those of approved for publication by WHO and systems. Clinical terminology codes adults. available for distribution in 2006. lack the “power of summary” found in For information: The development of the derived classification systems for Drs Huib Ten Napel, Dpt Head administrative reporting such as version of the ICF for children and WHO-FIC Collaborating Centre in the statistical reporting and youth drew on multiple sources of Netherlands reimbursement. evidence. These sources included Phone 31 30 274 20 39 content from (1) international E-mail: [email protected] For information: conventions for children and youth; (2) Marjorie S. Greenberg, chair of the

Education Committee, scientific expertise of the working group and consultants; (3) theoretical and conceptual contributions; (4)

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Revision of ClaML: Progress - The preparation of the proposal for global interoperability – as represented report revision of ClaML via CEN and ISO by WHO – it is necessary to embark on In the previous WHO-FIC Newsletter, The preparation of the proposal for a process that will prompt the the revision of the CEN/TS 14463 version 2 of ClaML has been an divergent initiatives to join forces for (Classification Markup Language – ongoing activity. Before and after the the benefit of all citizens. ClaML-) has been announced. Also the Tokyo meeting the experts from SemanticHEALTH develops a next steps in the revision process were DIMDI, WHO and the ClaML project European and global roadmap for mentioned. Progress is reported here team from Nijmegen have been in Research and Technology on three of the steps: continuous contact. The timeframe we Development(RTD) in health-ICT, are setting is: to finish the proposal focusing on semantic interoperability - The preparation of an information before December 1 2005. Put the issues of e-health systems and and discussion paper for the WHO- proposal into consultation by CEN for infrastructures. The roadmap will be FIC network meeting in Japan, a three months period, and after that based on consensus of the RTD A paper on a XML schema, based on complete the proposal for final community, and validated by ClaML has been prepared by the acceptance early spring 2006. stakeholders, industry and Member experts of DIMDI and experts of the The proposal contains two parts: State health authorities. It project-team of ClaML, and presented Part A, the normative part, existing of − identifies key short-term (2-5 years) by DIMDI at the WHO-FIC network the DTD for classifications in general, and medium-term (4-10 years) RTD meeting. and Part B an informative part, existing needs to achieve semantic of a proposal, for WHO-FIC interoperability of e-health systems - Consultation of the Electronic classifications specific. Part B deals (including issues of nomenclatures Tools Committee with the class kinds and rubric kinds presently in use, classifications, The presentation and discussion on the that are required to make the content of terminologies, ontologies, EHR and XML schema based on ClaML, within WHO-FIC classifications explicit and messaging models, public health the meeting of the Electronic Tools for internal harmonisation. This Part B and secondary uses, and decision Committee, was well received. This needs to be further elaborated in the support, their relationships, mapping resulted in a number of period up until March 2006. needs, limitations) recommendations. For information: − analyses unsolved RTD issues Concerning ClaML directly the Drs Huib Ten Napel, Dpt Head arising in the context of realistic recommendation is: WHO-FIC Collaborating Centre in the approaches to priority clinical and The XML schema based on ClaML Netherlands public health settings (reflecting on developed by the Electronic Tools Phone 31 30 274 20 39, models of use, benefits expected, Committee should be adopted as the E-mail: [email protected] concrete application experience and standard for the exchange of WHO- lessons learned; relevance of open FIC classifications as of the Tokyo SemanticHealth-Project source model) meeting. As of January 1st 2006, the Dutch − takes into account the impact of One of the recommendations Centre is leading a new international non-technological (health policy, connected to this first one is: project on semantic aspects of legal, socio-economic) aspects WHO-FIC centres that use their own interoperability of electronic healthcare The consortium and associated experts classification maintenance tools are systems. This project responds to a call represent centres of excellence from encouraged to add functionality for the initiated at a workshop on this topic four continents and the WHO. The import and export of classifications organised early 2005 by the Mr. Pierre project is lead by Pieter Zanstra from according to this XML schema. Lewalle, WHO Geneva, Prof Jean- Radboud University Nijmegen In the plenary session the Marie Rodrigues, Univ. St Etienne and Medical Centre (supporting part of the recommendations from the Electronic Dr. Ilias Iakovidis EU-DG Infosoc. Dutch-FIC-CC). Tools Committee were presented and To efficiently implement e-health to Next to WHO Geneva, and the adopted by the meeting. It was a meet the rising needs of mobile University of St Etienne, other memorable first time that citizens, patients and providers, its consortium members are György recommendation from a committee fragmented interoperability initiatives Surján, ESKI, Hungary; Martti have been accepted with such must come together and coordinate Virtanen, NCC University Uppsala, unanimous support. The Electronic with the increasing need to link clinical Dipak Kalra University College Tools Committee, and more specific data to information from basic London; Alan Rector University the group of experts, was biological sciences and evidence of Manchester. The project is supported complimented with achieving results in best clinical practice. Considering the by Veli Stroetmann, Empirica, Bonn. such a short timeframe. need for interoperability at the Member State and cross-border level of the For information: Pieter Zanstra European Union – as expressed in the E-mail: [email protected] EU e-Health Action Plan – and for Newsletter on the WHO-FIC, Volume 3, Number 2, 2005 10

WHO Photo Contest “Images of Health and Disability 2005/2006” Main Theme: "Children and Youth" with a special invitation to young photographers Special Prize: Health & Disability at work After the successful launch of the WHO Photo Contest in 2002 in conjunction with the release of the International Classification of Functioning, Disability and Health (ICF), the World Health Organization invites photographers around the world to participate in the international photo contest -- “Images of Health and Disability 2005/2006”. The photographers are invited to photograph the notions of health and disability in a variety of ways: - showing how people and in particular children and youth live with a disease, injury or health condition; - showing these themes from different perspectives, such as the body, person or societal perspectives; - capturing health & disability in the working environment; - illustrating key conceptual features: What is health? Can we measure health? Disability as universal human experience, which cuts across mental and physical conditions. EXCLUSIVE CALL FOR YOUNG PHOTOGRAPHERS: This year children and youth are invited to send us their photos on health and disability. Two special awards will be given for the best photos: (i) for children up to 12 years old and (ii) for teenagers between 13 and 17 years old. We strongly encourage you to give your creativity free rein. Further information on Health & Disability and the display of awarded photos from last years photo contest can be found on the ICF website: www.who.int/classifications/icf There are five categories of submission: 1. Colour photographs (digital or prints) 2. Black and white photographs (digital or prints) 3. Digital Art photographs (images created or drastically manipulated by computer software or electronic filters) 4. SPECIAL CALL category I: Children up to 12 years old. Submissions can be made as colour photographs (digital or prints), black and white photographs (digital or prints) or Digital Art photographs (images created or drastically manipulated by computer software or electronic filters). 5. SPECIAL CALL category II: Teenagers between 13 and 17 years old. Submissions can be made as colour photographs (digital or prints), black and white photographs (digital or prints) or Digital Art photographs (images created or drastically manipulated by computer software or electronic filters). In each category up to ten photographs may be submitted. For each category the following awards will be given: 1st Prize 1000 US-Dollars + one set of ICF publications 2nd Prize 750 US-Dollars + one set of ICF publications 3rd Prize 500 US-Dollars + one set of ICF publications Special mentions 100 US-Dollars + one set of ICF publications The closing date for entries is 31. March 2006. If you would like to take part in the contest by entering a photo, please consult the Competition Rules that follow. Contest winners will be announced prior to the 59th World Health Assembly which will take place in May 2006 in Geneva, Switzerland. The announcement of contest winner will also be posted on the WHO ICF website. A possible compilation of photos could also be published.

Please click on the following links to Click here to view the report or

access: download a copy: FIC around the http://www.aihw.gov.au/publications/index.cfm - the media release: /title/10162 World http://www.aihw.gov.au/mediacentre/2005/mr2 0050805.cfm Medical Indemnity National Data Collection Public Sector 2003 to 2004 Australia - the report, which is available for on- The Functioning and Disability Unit at line viewing and free download: Click on this link for the media release: http://www.aihw.gov.au/publications/index.cfm http://www.aihw.gov.au/mediacentre/2005/mr2 the AIHW has recently released the /title/10155 0050729a.cfm following reports: Alcohol and Other Drug Treatment Click here to view the report or Disability Support Services 2003–04: Services in Australia 2003–04 Report download a copy: National data on services provided on the NMDS http://www.aihw.gov.au/publications/index.cfm under the Commonwealth /title/10140 State/Territory Disability Agreement. Click on this link for the media release: http://www.aihw.gov.au/mediacentre/2005/mr2 For Information: 0050818.cfm Emily Richardson, AIHW [email protected]

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A Functioning and Related that are simple and have low resource − Performance in life areas: activities, Health Outcomes Module requirements (human, financial and qualified by difficulty and need for (FRHOM) time), to those that are more resource assistance; and participation, qualified by extent and satisfaction; The purpose of the FRHOM is to intensive. The types of tests proposed are: − Environmental factors, qualified by collect quantified summary extent of influence either as barriers or − Structured discussions during information on the level of functioning facilitators to functioning. of an individual. Information on a committee meetings − Key informant interviews Each table represents a component of person’s functioning should enhance functioning and has a range of domains data quality for medical purposes. It − Consensus conference − Mapping exercises and measures of the extent to which will complement information on − Completing FRHOM from case records that domain is affected. The tables can diseases and related health problems in − Pilot testing in projects that are about to be seen in the paper (B.5.5) presented a range of applications (AIHW 2005). happen in the WHO-FIC Network meeting in Kostanjsek and Üstün (2004) point out − Clinical test by interested clinicians Tokyo, 16-22 October 2005, that, to overcome the problem where − Testing the FRHOM with existing data www3.who.int/icd/tokyomeeting/docu assessment data acquired in one mentlist. In the meeting of the Test materials episode of care cannot be carried over Implementation Committee of the 1 A document for consultation and to another episode of care involving a Network, it was emphasised that testing will be distributed, together different clinical focus, a common FRHOM is a data capture tool with a survey form with a set of key framework is needed. This data capture designed to promote case summaries questions, to interested persons to tool is intended to provide that and communication. It is not an provide feedback to the project team. common framework and convey assessment tool for use in just one 2 A FRHOM User’s Guide gives summary information between care clinical context and in relation to one information about the purpose of the providers. It is designed for use in health condition. The project team is FHROM and how to collect health, clinical and community keen to receive feedback on the information. It is envisaged that the services and will be tested in these approach they are taking to implement User’s Guide will be revised in the settings. The FRHOM is a new, the ICF. compact module that can provide a light of information gained during summary that reflects the person’s testing. References 3 The set of key questions will form Australian Institute of Health and Welfare current status across all components of (AIHW) 2005. A Functioning and Related functioning as defined in the the basis of key informant interviews. Health Outcomes Module: the development of International Classification of Key informants include; a data capture tool for health information Functioning, Disability and Health − GPs and other medical practitioners systems. Canberra: AIHW (forthcoming) (ICF) (WHO 2001). It is not an − Health care providers, such as nurses, Kostanjsek N, Üstün TB 2004 Operationalizing assessment tool but draws on allied health professionals and social ICF for Measurement: Calibration, Qualifier, workers information collected from a range of Instruments. Paper presented at the WHO-FIC − Australian Government departments Network Meeting Reykjavik, Iceland sources, including the person and their − State and territory government carers, clinicians and the usual World Health Organization (WHO) 2001. The departments International Classification of Functioning, assessment processes. The information, − Health care consumers and people with Disability and Health. Geneva: WHO if gathered over time and by a range of disabilities For information: health and community care providers, − Community services providers Catherine Sykes on behalf of the ICF team will result in a complete profile of the − Clinical experts on cardiovascular person’s functioning. The module was in AIHW disease, diabetes and other chronic E mail: [email protected] developed following extensive diseases mapping of existing items on − Research experts functioning to the ICF. These items 4 A set of vignettes is available for Belgium included standardised assessment tools coding using the FHROM. Reporting (condition specific and generic), forms for completion by those ICF -ICPC Workshop in Ghent functional outcome, health related undertaking the tests have also been (Belgium), 23 November 2005 quality of life and population survey developed. In November 2005 at Ghent measures. Details of this work can be University, Department of General found in AIHW 2005. The FRHOM Practice and Primary Health Care, It comprises four tables for capturing members of WICC (Wonca Methods summary information to describe a International Classification The type of testing undertaken will person’s level of functioning: Committee) met with a WHO-FIC depend on the capacity of the − Body functioning, qualified by extent; representative Marijke W. de Kleijn- stakeholders to incorporate testing into − Body structure, qualified by extent, de Vrankrijker (WHO Collaborating their existing work programs. There location and nature; Centre in the Netherlands). are a range of possible tests, from those Representatives from four disciplines

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(social, mental, occupational, evolution to patient participation in the The social use of the classification physiotherapeutic) attended the EPR registration has to be taken into should be about collaboration, choice, workshop, together with three consideration in developing new tools. support and enhanced participation. It representatives from WICC and two Agreements have been made to make should not be about the restriction of specialists in informatics in Primary an inventory of existing tools in the rights or entitlements and there should Care. different disciplines, to explore what is be no assumption of homogeneity. missing in ICPC/ICD/ICF and the Aim of the workshop was to make an It is legitimate to question whether or Belgian Thesaurus, and secondly make inventory of what has to be added to not these brief guidelines are a choice of what has to be the GP’s EPR system to be more sufficient to support the ethical global implemented. comprehensive as an instrument in deployment and dissemination of The work will be done separately assessing patient’s problem, describing what is a very powerful classification. within the different disciplines, risk factors, implementing contextual It is also legitimate to query the followed by integration in a next information and also to make the EPR priority assigned to the Ethical phase. data useful for communication. Guidelines by the WHO itself when it Starting point was Chapter Z (“Social For information: sees fit to be able to drop them from Problems”) in ICPC-2 and the Marc Verbeke the short version of the classification. mapping of ICF to ICPC-2. First drafts E-mail: [email protected] In the absence of a justification for of mapping ICPC-ICF have been made this editorial decision, one might well already but have to be improved and Ireland assume that either ethics did not rate tested. Marijke de Kleijn gave a as a high enough priority for inclusion practical frame to create a mapping Is the current Ethical in the short version or that the proposal. Rewriting the chapter Z in Framework for the ICF omission was the result of an ICPC-2 could be an important step sufficient? oversight. Whatever the reason, the forward. This will be part of the The current statement of ethics in omission sends a very unhelpful discussion in developing ICPC-3 by relation to the ICF comprises of an message to people with disabilities WICC. Not the entire mapping of introduction and eleven short and and their advocates. This is ICPC-ICF belongs to chapter Z, but the concise statements about the ethical particularly so in a context in which focus in this workshop was on social, issues that need to be addressed in the there has been little or no public mental and occupational problems, application and dissemination of the activity or debate in relation to the together with physiotherapeutic issues. Classification. The areas covered ethical risks associated with the use of the classification nor have the ethical ICPC-2 and ICD-10 are already include respect and confidentiality, guidelines formed a core element of mapped and implemented in the the clinical use of the ICF and the training courses or presentations on Belgian EPR. The Belgian GP’s also social use of the ICF. Fundamentally, the ICF, that I have come across. have a bilingual (Dutch/French) the guidelines are predicated on the thesaurus with a list of about 45.000 premise that every scientific tool can Surely there is an onus on those who “clinical labels”, all double encoded be misused or abused (Annex 6). The support the global application of the ICPC/ICD. stated aspiration is that attention to the ICF to provide more detailed guidelines will reduce the risk that the guidance on how ethics should be ICF at this point is the next ICF will be used in disrespectful or incorporated into the development and classification to be added to the harmful ways. application of instruments and tools system. The task of the representatives based on the ICF. There is a critical of the different disciplines at this The core principles at the heart of the requirement for the international workshop was to look what is still Guidelines include an community to take on board the very missing in these classifications for use acknowledgement of the inherent real concern of people with in Primary Care. So a list can be value & autonomy of the person, a disabilities and their advocates that created of items to be added when prohibition on the labelling or the ICF has the potential to be chapter Z will be rewritten. categorization of people, the requirement for full knowledge and deployed in ways that may not be in A distinction has to be made between informed consent on the part of the the best interests of vulnerable people. information to be added to the participant and the safeguarding of This concern needs to be addressed classifications and information to be privacy and confidentiality. In clinical not simply through a static statement added to the EPR. Information to be use, the guidelines place a of an ethical code but through a added to the EPR is independent of responsibility on the clinician to dynamic process of ethical decision- describing the patient’s problem at that explain to clients the purpose for making that is incorporated as a core time, but important to register in which the classification is being used, element of the Classification. The function of a surveillance task. to support and encourage the active ethical framework and guidelines The future of communication, participation of the person and the use must be considered as an integral part administrative management and the the classification in a holistic way. of the use of the tool and, in any

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future publications of the practical format for the production of is highly likely that the ICF will be Classification, should be presented in regulatory instruments. used to address the issue of costs the introduction and highlighted. associated with disability. Finally and most importantly the ICF In order to stimulate discussion and has consensual power. It has been - Technological vulnerability: debate about the issues and to developed through a discourse With the introduction of Personal emphasise the need for the prioriti- between the World Health Identification Numbers (PINs), the sation of ethical issues in global Organisation and Disabled Persons ICF provides a systematic discourse about the ICF, a number of International. It is currently on trial. methodology for computerising all concerns are discussed here. DPI has made a conditional decision information about an individual in to support the ICF in the medium relation to their current status. Once Inequalities of power: the Individual term. This decision has repercussions information has been coded and and the ICF at national level for disability activists stored within an information The main ethical concerns with regard and Centres for Independent Living. management system, it can be used to to the use of the ICF arise from The ultimate success or failure of the calculate probabilities of outcome, inequalities of power. The ICF is a ICF depends upon the way in which estimate return on investment in very ‘powerful’ Classification, which the Classification is utilised. In its relation to certain conditions, specify is generally understood and applied own terms, it is a part of the those for whom certain interventions by professionals on behalf of people environment that has the potential to are counter indicated and to who are in many cases vulnerable. be used to disable people with implement programmes and The power of the ICF emanates from reduced function either inadvertently mechanisms that can have substantial a number of sources. Specifically, the or intentionally. Equally, it can be the implications in terms of personal costs ICF has descriptive and explanatory cornerstone of creating inclusive for individuals with reduced function power in so far as it is possible to use processes that enable people with and their families. it to document and explain why disabilities to participate to the full in individuals or groups of individuals In order to ensure that the ICF is mainstream society. are experiencing activity limitations ethically applied and deployed across and/or participation restrictions. It has Inequalities of power can arise from a Member States and across disciplines, linguistic power in that it provides a wide variety of factors. The a number of steps must be unique opportunity to communicate complexity of the ICF in itself creates implemented. across linguistic boundaries, cultures a barrier to self-advocacy and to 1. A clear and comprehensive Code and jurisdictions. It has professional personal empowerment. of Practice must be developed and and academic power. The ICF is - Personal Vulnerabilities endorsed by WHO likely to become incorporated into the Inequalities of power can arise from a 2. It must be ensured that all research practice of researchers and range of factors including personal professionals are trained in, and academics and the professional vulnerabilities. For example Age - have committed to, the Ethical practice of doctors, social workers, people can be very young, even at the Code of Practice psychologists and other allied health foetal stage of development, or very 3. Professional associations must professionals. It has the potential to old and approaching senility; Gender - incorporate the ICF Ethical Code be used within the legal system by people can be at risk of double of Practice into their own ethical lawyers and judges to determine the discrimination on the basis of gender guidelines outcome of legal cases. and of disability; Health - people who 4. People with disabilities, families The ICF will accrue institutional, are not well and experiencing pain or and carers must be educated and administrative and regulatory other symptomatology may have made aware of the Ethical Code of power as government departments, difficulty in coming to terms with the Practice and their rights under the authorities and agencies begin to ICF; or Genetic Inheritance - people Code adopt it as the basis for decision- with clearly identified conditions, 5. National and international ethical making in relation to the allocation of some of which have not manifested monitoring structures must be put resources, the determination of themselves as yet, have the potential in place eligibility, the application of to be classified prematurely using the 6. The Guidelines must be reviewed procedures and political decision ICF. and augmented to address making. In an environment where the beneficence, competence, social - Economic, social and cultural application of national disability justice and extended responsibility. imperatives: strategies has given rise to the There is a range of issues facing For information: development and implementation of a society that are high on the agendas of Dr. Donal McAnaney range of legal instruments to protect many Member States. The ICF could Director, Rehab Group and promote people with disabilities National Secretary Ireland, Rehabilitation provide States with a tool to begin to within society, the ICF can provide a International address these issues. For example, it [email protected]

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The Netherlands the short set of the Washington Group, during the annual meeting last October WHS-17, WHO-DAS-36 and the short in Tokyo. As a result it was found that ICF based surveys and statistics Australian census question set on need the use of the ICF in surveys should There are several activities relating to for assistance. It is expected that WHO mean at least: the development of internationally and UNESCWA will start a similar - use of correct ICF terms, concepts and comparable question sets for the project in the ESCWA region. definitions; measurement of Functioning and - use of the correct ICF scheme; Eurostat: At the level of the EU a set - use of the full spectrum of the ICF (e.g. Disability in censuses and surveys. All of modules relating to health, health covering all components but not of them intend to use the ICF as the care and health determinants. The necessarily all classes of course). framework. But what does it mean and modules are intended to be We recommend all involved persons how is the use of the ICF applicable for implemented in national surveys in and organizations to see what this could surveys? And second: how is order to improve the cross national mean for their work. coordination of these activities at world comparability of health and disability Need for coordination and regional level to be realized in statistics at the European level. The It is clear that countries will not be able order to prevent different European Health Status Module to use different measurement recommendations for the measurement (EHSM) encompasses questions such instruments dealing with at least partly of functioning and disability in surveys as diseases, mental health, functions, the same items in one national survey; sent to countries? First of all we present activities and a few participation budget and space/time in a short (not limitative) over-view of questions on participation. This module questionnaires/interviews do not allow current activities in this area. was available for field testing in 2005; to do so. For that reason it is experiences will be analyzed in order to UN: Under the aegis of the UN a so- recommended to try to synchronize the finalize this module. In 2006 a module called city group, the Washington questionnaires: questions dealing with on functioning/ disability including Group on Disability Statistics (WG), is the same issue should be the same or more extensive participation issues and in charge with the development of a can be a specification of each other; environmental factors will be short set for the measurement of questions dealing with similar issues developed. For this module Eurostat is disability in censuses and extended sets but different components of the ICF aiming at synchronization with the for the measurement of disability in (e.g. body function compared to Washington Group results. national population based surveys. activity) should reflect the differences. Both are intended to improve cross UNECE/WHO/EUROSTAT: An A complete matrix using the ICF as a national comparability of disability initiative taken by the UNECE in ruler and crosswalking the initiatives/ statistics. So far the WG developed a cooperation with WHO and Eurostat questionnaires mentioned above is draft short set including 6 questions on includes the development of a presented as an Attachment to the seeing, hearing, walking and climbing measurement instrument for health annual report of the WHO-FIC steps, remembering and concentrating, state. Items mentioned as to be Implementation Committee 2005, self care, communication. So this set is included are: vitality/fatigue, cognition paper number B.5-8, to be found at mainly relating to body functions and (memory, concentrating, thinking, www.who.int/classifications/network/ (some basic) activities. The set has problem solving), affect, anxiety, meeting2005. been used and is going to be used in vision, hearing, pain and discomfort, All responsible persons are invited to several countries in South America and mobility, dexterity, social relationship take this recommendation into account Africa for cognitive and field testing. including communication. in order to create realistic The extended sets are still under recommended measurement ICF relation development; at least one (not yet instruments and cross national Although all activities mentioned accepted) proposal includes the use of comparable functioning and disability above indicate to use the ICF as the the WHS-17 and the WHO-DAS-12 as statistics. an extended set. A second set could framework, the relationship is not very include more participation and clear in all situations. This has been For information: environmental factors related questions. discussed by the WHO-FIC network [email protected] On the longer term it might be possible Seeing/vision Hearing to develop a short set on participation WG short set Difficulty seeing even with Difficulty hearing even and environmental factors. glasses with a hearing aid The UN planned in the census program WHS-17 Seeing/recognizing a person; Hearing someone; hearing 2010 to include the measurement of seeing/recognizing object a conversation disability including the recommended UNECE/WHO/Eurostat Vision Hearing questions from the Washington Group. EHSM Eurostat Seeing newspaper print Hearing a conversation with./without glasses/ see a with several people; WHO: WHO and UNESCAP carried face hearing a conversation out disability pilot studies in de ESCAP with one person region. The questionnaire encompasses Two examples of questions dealing with the same or similar issue

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Emancipation for people with 1 Practical skills in the personal sphere to give form to their own lives and it is disability by means of evaluation 2 Practical skills in the domestic sphere suitable for several user groups. For many years, the kind of help offered 3 Practical skills in the community The client completes the questionnaire 4 Intellectual skills to mentally disabled people was (with parents, care workers, and 5 Personal skills behaviour experts). The answers are defined by the vision of the 6 Social skills, individual traits professionals who knew what was good 7 Social skills, social functioning fed into the computer. The results are for their clients. It was a matter of “you 8 Special areas focussed on serious then compared with the existing profile get what you are offered”. behaviour problems of the client and the requirement for Towards the end of the eighties and the 9 Special areas focussed on epilepsy care. As a result, there is not only a beginning of the nineties, pressure by A specialist institute that serves people method, but also a procedure that parent organisations brought about a with light mental impairment and includes the client. change in this process. These groups serious behaviour problems drew up the In practical terms, some people with managed to persuade the authorities that questions under section 8 together with mental disability do not always they wished the care offered for their specialists and practitioners in this field. understand the written text and often disabled child to be based not only on For the questions concerning epilepsy, more information is needed. Spoken the request for help from the child but the same process was applied using an text, signs, illustrations, or a also on the needs of the family. extensive inquiry with the “Stichting combination of all three will enhance The government shared this vision and Epilepsie Instellingen Nederland”. the written word. This is a good reason obliged the various institutes to adjust Neurologists, behaviour specialists and to develop a multimedia version of the their offer of care to suit the client. A management also contributed. Evaluation Scale. very important aspect was the Questions, based on the concepts used The Evaluation Scale will ensure the introduction of the Personal Budget: by neurologists concerning the types of quantity and quality of the care to be this budget gave the clients the financial attacks, were developed to ascertain the offered to the client as follows: means to buy their own care. safety of independent living. − Measurement of possibilities and The introduction of this kind of care Finally the same process was applied to limitations motivated the Province of Groningen in people with profound multiple − Mapping of the phase of the the early nineties to support a group of disabilities. development process parents with mentally disabled children − Revealing the existing skills and the What distinguishes the Evaluation Scale desires of the client to retain skills or to in the town of Ter Apel with the and what makes it unique is that after develop them further development of living accommodation each question a time assessment is − The evaluative use of the Scale to for their children. The initiative came fixed. This determines the amount of measure progress or deterioration about in collaboration with Stichting time needed for the support of the The framework of the International Humanitas DMH, which champions a client. The support time needed is society in which people with disability Classification of Functioning, Disability combined with the desired structure of and Health (ICF) shows the actively shape their own life and also the future living situation, which must take responsibility for living with each classifications which form the create sufficient safety.This process has standardised understanding of human other. This is applied to services in the been automated completely. The time areas of well being, living and care. functioning and the problems associated assessment is based on the practical with it. With the help of the ICF, human Because this initiative was so new, the experiences of the care workers. Up to Stichting Humanitas DMH was, among functioning can be described from now about 3500 Evaluation Scales have various perspectives: those of human others, supported by the Education been used and 90% of the client Faculty of Groningen University. functioning, human behaviour and as a network identifies with the result. It can member of society. To get a good insight into the needs of be presumed that the reliability of the The various components of the the client and to offer the right kind of results is more than 90%. Evaluation Scale were compared with help in the right place it was necessary Clients have information available with those of the ICF. This comparison will to make a detailed study using an which they can indicate their care bring the Evaluation Scale into extensive questionnaire. This was the requirement and so consequently buy harmony with the ICF and will possibly beginning of the development of the care provision. Based on measured contribute to improving the ICF. In Evaluation Scale (in Dutch: information, they know what they need order to learn more about international Taksatieschaal). and they have control. When he or she developments we will be pleased to During the following years, this then buys the necessary care armed with contact researchers involved in the Evaluation Scale was developed into an a personal budget the emancipation same field. instrument in which the practical and process is strengthened even further. socio-emotional skills of the client are To give people with disability control For information: Bert Reintjes assessed by means of 450 questions. over their own lives seems obvious but E-mail: [email protected] The questions are divided into 9 it is not an easy task. The Evaluation sections, e.g.: Scale a marvellous instrument for them

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