eHealth2006: High Level Conference and Exhibition, Malaga, May 12, 2006

1. Mediation between People, Languages, Cultures, and MachinesPieter E ZanstraRadboud University Nijmegen Medical CenterCo-ordinator EU SemanticHEALTH Specific Support Action:Semantic Interoperability Deployment and Research Roadmap eHealth2006: High Level Conference and Exhibition, Malaga, May 12, 2006

2. Where are we coming from.. Reviewed. Primip FT No ANC probs F/D at 08:45 Needed synto for contractions about 7cm Decent progress since. Epidural in-situ No urges to push really according to patient Contractions 4:10 but poor duration & strength (on 60 u/s /synto) PA: Ceph 0/5 VE: Head at +1 Caput +1 No ??? OA position Cx F/D NO DESCENT Tried pushing – poor maternal effort despite instruction Although epidural working well, doesn’t stop longstanding spasmodic hip pain. Very problematic FHR CTG  No descent with attempts at pushing – poor effort. Plan… a) Push synto  b) Need really try to push & work on technique c) reassess at interval 15 mins & D/W consultant Would not be happy to have to exert traction with Forceps when no effort & no descent

3. Classifier Referral letters Reimburse Manage ? Grouper Record Competing demands on recording ICD, ICPM DRG Documentation Categorise

4. Classifier Grouper Reference Terminology Service Record What kind of business logic do we need? ICD, ICPM DRG Documentation

5. CEN/ISSS eHealth FG Recommendation 13 (2005) • The Member States, with the Commission, should: • ensure the Europe wide referencing and easy access to the content of existing health coding systems based on registration of such systems by the Eurorec Institute; • support the international convergence towards a common framework for formal representation, and eventually the development and maintenance of a multilingual clinical reference terminology. This effort should build on existing efforts in formal representation as GALEN, FMA and SNOMED, and be carried out in liaison with the WHO Family of International Classifications • make the targeted reference clinical terminology publicly available free of charge; • support a common approach to link national classifications of procedures, to support cross-border reimbursement of health care.

6. Clinical terminology • A clinical terminology is the collection of standard terms with their synonyms, which in the context of patient care support the recording of complaints, signs, symptoms, circumstances, process of illness, interventions, results, diagnoses, as well as the decision making of the care providers

7. What binds Records, Interface, Reporting, Knowledge…? Interface Terminology ReferenceTerminology Health Record Reporting Terminology (ICD) Discharge Referral..

8. Record architecture terminology (mediation) Name, Context and Content physical examination CONTEXT breast palpation lump NAME present CONTENT

9. Sound semantics underpinning continuity in care

10. What is a term referring to? • Blood pressure • Evaluation result (high, low) • Measurement (diastolic, systolic) Archetype/Template? • Guideline (how to measure?) • Rheumatoid arthritis • Evaluation result • Measurement (criteria)

11. The example: A patient coming from Switzerland to a German pharmacy is looking for a drug well known in Swiss: „DROSANA Resiston Trpf.“ Semantic interoperability(example of drugs with different trade marks) The name of this drug is not known in German pharmacies! The pharmacist • will not find this drug in his drug data bases, • is not able to identify the ingredients of the drug, • can not look for an equivalent drug available in Germany. Reinhold A. Mainz, BMGS, Germany, Project Group Telematics – Health Card 14./15. February , Bruxelles, EC / WHO Workshop on Semantic Interoperability

12. Multiprofessional Records and terminology • Differences in vocabulary • Differences in the meaning of the vocabulary • Differences in aspects/abstractions • Nurse: ‘constipation’ is an elimination problem • Doctor: ‘constipation’ is a bowel function disorder • Difference in operational significance • Reflecting differences in professional tasks 35

13. Classification & Model of Use

14. Classification & Model of Use

15. Codes, codes everywhere... SNOMED-3 READ-2 MeSH ICD-9 ICD-9-CM ICD-O NCSP ICPM OXMIS ECRI-UMDNS SNOP HCFA ACR-NEMA IUPAC-NPU LOINC DICOM-SDM MCTGE CDAM NGAP ICPC OPCS-4 CPT-4 NDC NANDA ICNP AIDSLINE MED80 MED66 AIDSDRUGS AIDSTRIALS ChemID CHEMLINE GENE-TOX HISTLINE SDLINE TOXLINE TOXLINE65 TOXLIT PDQ AVLINE BIOETHICS CANCERLIT CATLINE DENTALPROJ MEDLINE POPLINE SERLINE DOCUSER Dxplain AI/RHEUM Iliad GenBank OMS PSY TRIFACTS NIOSH NPIRS NEDRES MED85 MED75 HSTAT HDA MED90 HealthSTAR ACR92 AIR93 BRMP96 NIC ULT BRMS96 COSTAR CPM CRISP COSTART DMD DSM III & IV DOR HHC INS LCH MCM MIM Neuronames WHOART CTV3 CCHI (Canada) MBS-E (Australia) ICD-10-PCS (USA) ICPM-NL (Netherlands) NCSP (Swedish Version) NCSP (Finnish Version) ICPM-DE (Germany) CCAM (France) SNOMED-CT (USA-UK) OPCS-5 (UK) SKS (Denmark) ICIDH (WHO) Digital Anatomist (UW) Nomina Anatomica

16. And there is more to come…… • Official Inventory on IT systems • 52 ‘exotic’ patient record systems • 1 ‘summary-system’ used by 250 physicians of which 70 daily containing 20.000 patients • Inventory by students • Estimated 200 ‘exotic’ systems • At least 200 shortlists for diagnosis, treatment • Only some terminologies properly documented/maintained

17. The exploding bicycle accidents • ICD-9 (E826) 8 • READ-2 (T30..) 81 • READ-3 87 • ICD-10 587

18. Structured Data Entry File Edit Help The next Challenge: Adequate data capture ! Cycling Accident What you hit Your Role Activity Location

19. ?    The classification of Chocolate C-F0811 C-F0816 C-F0817 C-F0819 C-F081A C-F081B C-F081C C-F0058 Term ReadV3 SNOMED-CT Bounty bar Crème egg Kit Kat Mars Bar Milky Way Smarties Twix Snickers UbOVv UbOW2 UbOW3 UbOW4 UbOW5 UbOW6 UbOW7 Ub1pT

20. Some Myths Stage of development Open Source Open source will most definitely not be free of cost; A complex terminology is required, and we should not expect this to appear without significant investment The critical mass of skilled & dedicated contributors to a large Health terminology is too small for a sustainable system Evidence Based Medicine Only about 5-8% of present medical knowledge is based on sound evidence. RCT’s are very costly and time-consuming. We can not longer ignore the need for routinely collected observational data of high quality. Problem of finding ‘outliers’ in the literature

21. A bit of Archeology (1) • 2nd EU/CEN Workshop (1997) • Central resources - public or private - are urgently needed for European Industry to address a single market • Central reference resource of concepts • Multilingual lexicons • Language independent development tools • A strategy to maximise European influence on international developments is needed • New developments in HL7, CorbaMed, DICOM, UMLS • Establishing evolutionary pathways from existing systems to future systems • Communication architectures should address mediation & conversion

22. A bit of Archeology (2) • SESAME Committee (1990) • Medical Semantics Advisory Task (Mesat) • Establish national standardisation organisations for semantical aspects in medicine • European medical termbank (Eumet) • European Model of Health Care (Euromodel) • European Classification of Medical Procedures (Euclamep) • Harmonization of validation and coding rules for ICD

23. Still many open questions • What level of detail is required • Revolutionairy/evolutionairy implementation • How do we cope technically • How do we cope in the business process • How do users cope cognitively • How do we cope with version control in the new highly interdependent architectures

24. Observations • Development still driven by ‘perceived need’ • No yet hard evidence to prove added value • For the next five year seen by industry as exhaustive list of fixed terms • Growing evidence to reconsider the ontologies behind systems • Both SNomed CT and GALEN stem from early 90s • Systems not plug and play • Significant cost of translation • Multitude of base cost goes into localisation

25. Evolving use case Epidemiology Organising care Documenting Care Access to knowledge Unsolved Problems Quality Assurance Efficient data capture Interrater variability Cost Model Clinical Terminology Summary • Evolving Technology • Enumeration – ICD • Interlingua – UMLS • Formal Ontology – SNOMED CT • Technological Barriers • Enumeration doesn’t scale • Computers can’t read • Humans can’t organise • Tower of Babel

26. Recommendation: Establish the process • Focus on real immediate needs, and realistic time scales • Be prepared to throw away what you loved and cherised! • Be aware and secure solutions for different cultures/ languages • Do not just select a single product, but join forces to redesign with best of breed • Involve and explain to those who have the burden of recording (registration dividend) • Without a well managed network of compentent expertise centres, the process is likely to fail

27. Specific Support Action co-funded by the European Commission SIXTH FRAMEWORK PROGRAMME Acknowledgements Radboud University Nijmegen Medical Center Department of Medical Informatics(Co-ordinator) University College LondonCentre for Health Informatics, UK World Health Organisation Dept. Measurements & Health Information Systems, Switzerland University of Manchester Health and Bioinformatics Group, UK Uppsala UniversityNordic Centre for Classifications in Health Care, Sweden National Institute for Strategic Health ResearchHungary University of St. EtienneDepartment of Public Health & Medical Informatics, France Communication & Technology Research,Germany

28. Thank you for your attention! Further information: www.semanticHEALTH.org semantichealth@eski.hu Pieter E Zanstra Radboud University Nijmegen Medical Center P.Zanstra.mi@xs4all.nl