1. Mediation between People, Languages, Cultures, and Machines Pieter E Zanstra Radboud University Nijmegen Medical Center Co-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. Competing demands on recording
ICD, ICPM
Classifier
Referral letters
Reimburse
Manage ?
Grouper
DRG
Documentation
Categorise
Record

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

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
Reference Terminology
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. Semantic interoperability (example of drugs with different trade marks)
The example:
A patient coming from Switzerland to a German pharmacy is looking for a drug well known in Swiss:
„DROSANA Resiston Trpf.“
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
….ranging from terminologies which aim to encompass the whole of clinical care to those focussed on a particular subdomain, like AIDS or radiology.

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 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
ICD

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

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

20. Evidence Based Medicine
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. Clinical Terminology Summary
Evolving use case
Epidemiology
Organising care
Documenting Care
Access to knowledge
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
Unsolved Problems
Quality Assurance
Efficient data capture
Interrater variability
Cost Model
But this turns out to be very hard, for the reasons given above.
Perhaps the most important problem is that humans can’t be bothered to spend the time needed to give the computer what it needs.

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

28. Thank you for your attention!
Further information:
Pieter E Zanstra
Radboud University Nijmegen Medical Center