Japanese activity in localisation of the openEHR project.

1. Localisation of archetype to validate
feasibility of ISO 13606/openEHR in
Japan
Shinji KOBAYASHI
Ehime university

2. Agenda
• Localisation / Internationalisation
– Localisation/Isolation
– Translation, adaptation
• ISO 13606/openEHR adoption in Japan
– openEHR.jp works
– Intractable disease surveillance program
– Archetype localisation/adaptation
• Summary

3. Localisation / Internationalisation
• Localisation
– Language translation
– Currency, Date, time, time zone
– Culture, rules, law
– NOT isolation
• Internationalisation
– Capacity for multiple localisation
– Resource for many countries and regions

4. Localisation/Isolation
Regional
Regional
community
community
International community
International community
International community
Regional Regional
Regional
community community
community
Internationationalisation
Localisation Isolation

5. Common problems in software
localisation to Japan
• Translation
– Word sequence
• Ex. From A to B(En) AからBへ(Ja)
– Not one to one
• By context, situation
– No adequate concept in Japanese
• Character encoding
– UTF-8, UTF-16, S-JIS, JIS, EUC-JPN….
• Address sequence
– Reverse from Western style
• Prefecture, City, Town, number
• Tends to fork or isolate
– Fitting for Japan unique situation?, Going to Galapagos?

6. Japan has specific features, but not
unique
• Language and character is unique?
– Arabic languages are written from right to left
– China and Korea also use 漢字
• Culture is unique?
– Each country has its own culture
– Japan enthusiasts are all over the world.
• Therefore our contribution can help other
countries

7. Translation
• Is it really match?
– Pounding pain(en) がんがんする痛み（日本
語）
• Hard to translate
– Word has various meanings in situation
• Shin-satsu(診察）
– Clinical examination and consultation
– Each doctor has each ‘Shinsatsu’ style
– Concept is not common in/out Japan
• Kyo-iku mama(教育ママ）
• Health care(broader than 医療)

8. Form localisation
Sometimes, word sequence arrangements are needed for non European language.
This arrangement needs not only dictionary rules, but more codes for it.

9. Favorable features to
localisation/internationalisation
• Source code availability
– Open Source Software is ideal
• International community
– Premise to multi-lingual environment
– Rich in other translation efforts
– Capacity for localised patch
• Regional community
– Discuss on localisation
– Promotion in Japan

10. Why openEHR?
• Interoperability for
– Clinical research
– Healthcare governance
– Evaluate clinical care
– multi language environment
• ISO 13606 Standard
– Experience
• >20years
– Establishment
• Open source software implementation by international
community
http://openehr.jp/

11. The works of the openEHR.jp
• The first regional activity of the openEHR project
• Translation
– Architectural over view, openEHR licensing
– openEHR primer,Eiffel FAQ
– openEHR Models, Archetypes and Biomedical Ontologies
• Delegation to international community
– International congress, Medinfo2007, Medinfo 2010
• Implementation
– Ruby implementation for openEHR specifications
• Seminars
– MOSS, Seagaia meeting, This seminar!

12. Localisation (Translation / Adoption) of
archetypes
• Two translation facilities for existing archetype
– Clinical Knowledge manager
– Archetype Editor
• Creation new archetype for domestic use
– Archetype editor
– Needs international discussion
• The most of those we think it is only in Japan are often
universal problem
Social network system will help you.

13. Common problem of Japanese
translation in health care domain
• Demographics
– Name, Address
• Health care insurance
– Universal care
• Role instability
– Doctor, Nurse, Radiologist, Pharmacist…
• Laws define each role for health care professional
• Change their role in hospital to hospital, area to area…
• Term translation
– Subjective representation(obscure definition)

14. Archetype in intractable disease
surveillance in Japan
• Localisation
– Archetype translation to Japanese
– Design for Japan domestic clinical issue
• Adaptation
– General practice <-> Specialised medical service
• Auto-immune disease, neuron degenerative disorders
– Archetype adaptation to Japanese clinical
environment
– Easy: Physiology, anatomical location
– Difficult: Demographics, Administrative concept
– Other problems: Chemistry

15. Healthcare insurance in Japan
• Universal care
– For all patient
– For all medical provider
• Two systems
– Medical insurance(for all generation)
– Long term care insurance(for aged people)
• Other support program by national/local
government
– Handicapped, Children, Single mother…

16. ‘Nambyo’
• So called ‘intractable disease’
• Definition
– diseases that have resulted from an unidentifiable
cause and, without a clearly established treatment,
have a considerably high risk of disability
– diseases that chronically develop and require a
significant amount of labor for the patient’s care,
causing a heavy burden on other family members
of the patient, both financially and mentally

17. ‘Tokutei shikkan’
• Specified rare and intractable disease
– Public subsidized
• Definition
– Chronic development and serious consequences
– Treatment of these disease is expensive for
patients and families.
– Lack of information for diseases
• Classification
– 56 diseases, 615,568 patients registered

18. List of ‘tokutei shikkan’
01 Behcet disease Parkinson disease Sheinker syndrome -fatal 56 Diencephalo-hypophysial
02 multiple sclerosis 21 amyloidosis familial insomnia dysfunction -Syndrome of
03 myasthenia gravis 0 22 ossification of posterior 39 primary pulmonary hypertension abnormal secretion of
longitudinal ligament (OPLL) 40 neurofibromatosis type 1, prolactin -Syndrome of
4 systemic lupus erythematosus abnormal secretion of
(SLE) 23 Huntington disease neurofibromatosis type 2 gonadotropin -Syndrome of
05 subacute myelo-optico- 24 moyamoya disease 41 subacute sclerosing abnormal secretion of
neuropathy (SMON) 25 Wegener granulomatosis panencephalitis (SSPE) antidiuretic hormone -
06 aplastic anemia 26 dilated cardiomyopathy, 42 Budd-Chiari syndrome Syndrome of abnormal
07 sarcoidosis congestive cardiomyopathy 43 idiopathic chronic pulmonary secretion of Thyroid
thromboembolism with stimulating hormone -
08 amyotrophic lateral sclerosis 27 multiple system atrophy - pulmonary hypertension Cushing disease -
(ALS) striatonigral degeneration Acromegaly -
09 scleroderma , dermatomyositis, (SND) 44 lysosomal storage diseases - Hypopituitarism
or polymyositis -olivopontocerebellar Fabry disease -other
atrophy (OPCA) -Shy-Drager lysosomal storage diseases
10 idiopathic thrombocytopenic syndrome 45 adrenoleukodystrophy (ALD) 615,568 patients registered
purpura
11 (1) polyarteritis nodosa (2) 28 epidermolysis bullosa 46 Familial Hypercholesterolemia
microscopic polyangiitis 29 pustular psoriasis ( Homozygous type)
12 ulcerative colitis 30 disseminated spinal canal 47 spinal muscular atrophy (SMA)
13 Takayasu arteritis stenosis 48 spinal and bulbar muscular
31 primary biliary cirrhosis atrophy (SBMA)
14 thromboangitis obliterans, 49 Chronic Inflammatory
Buerger disease 32 severe acute pancreatitis
33 idiopathic necrosis of the Demyelinating
15 pemphigus Polyneuropathy
16 spinocerebellar degeneration femoral head
34 mixed connective-tissue disease 50 Hypertrophic cardiomyopathy
17 Crohn disease 51 Restrictive cardiomyopathy
18 fulminant hepatitis 35 primary immunodeficiency
syndrome 52 Mitochondrial disease
19 malignant rheumatoid arthritis 36 idiopathic interstitial pneumonia 53 lymphangioleiomyomatosis
(rheumatoid vasculitis) 54 Severe erythema multiforme
20 Parkinson disease and related 37 retinitis pigmentosa
38 prion diseases -Creutzfeldt- (Acute Phase)
diseases -progressive 55 Ossification of the ligamentum
supranuclear palsy - Jakob disease (CJD) -
corticobasal degeneration - Gerstmann-Straussler- flavum

19. The Specified Disease(tokutei
shikkan) Treatment Research Program
• Prefecture government
– Certificate and yearly renewal
– Application document includes:
• Application and consent form
• Clinical research form certified by doctor
• Certificate of residence, earnings, and other
• Subsidy
– Partial-total by earnings

20. Improvement ‘Tokutei-shikkan’
surveillance project organization
• Leader
– Prof. Tsutom Chiba, Gastroenterology, Kyoto Univ
• Clinical group
– Prof. Tsuneyo Mitsumori, Clinical immunology, Kyoto
Univ
– Prof. Ryosuke Takahashi, Clinical neurology, Kyoto Univ
• Informatics Group
– Prof Hiroyuki Yoshihara, Kyoto Univ
– Eizen Kimura, Shinji KOBAYASHI, Prof Ken Ishihara,
Ehime Univ

21. Problems
• Certificate criteria
– Vary from prefecture to prefecture
• National data registry
– Permitted researchers construct databases for
their study at that time
– Nation wide follow up system
– Quality management
– Epidemiological new findings
– Security issues

22. 2010/Feb.
Traiinng@Melbourne
review MindMap
Archetype prototyping

24. Hard discussion in Cape town

25. Clinical research form

26. Mindmap designed for clinical
research form, first trial

27. Concepts confusion (eg. SLE form)
• Skin and mucous symptom
– Skin itching -symptom
– Butterfly rash -inspection
– discoid erythema -diagnosis
– Photosensitive -diagnosis
– Raynaud's phenomenon -diagnosis
– Oral or nasal ulcer -inspection
– Alopecia -diagnosis(L65.9)
– subcutaneous nodule -inspection
– ulcer or infarction -inspection or diagnosis
– Finger gangrain -diagnosis
– Livedo reticularis -diagnosis

28. MindMap version 2

29. Mindmap version 3

30. MindMap current version

31. Archetype localisation/adaptation
• Address
• ESR/FBC
• Insurance
• Family history
• Severity?
• Modality?
• Terminology

32. Address in Nambyo form
• Prefecture government
– Nation / prefecture budget
– management by prefecture
– Prefecture deal subsidy to patients
• Address archetype localisation
– Lack of granularity for Japanese local government
– Reversed style

33. FBC archetype

34. ESR/FBC
• ESR(Erythrocyte sedimentation ratio)
– Marker for SLE activity(not CRP)
– Included in FBC archetype
• FBC(Full blood Count)
– WBC, RBC, Ht, Hb, Plt,(ESR)
– WBC classification lacks immature myeloid series
• ESR is isolated from FBC
• WBC classification -> cluster?

35. Blood cell classification
(microscopic)
• Myeloblast • Erythroblast
• Promyelocyte • Reticulum
• Myelocyte • Monoblast
• Metamyelocyte • Promonocyte
• Proerythroblast • Phagocyte
• Basochromatic- • Lymphoblast
• Orthochromatic • Plasmacyte
• Normochromatic • Megakaryocyte
• Megaloblast • Promegakaryocyte

36. Insurance
• Universality?
– Public, private, conditions, country
– Domestic matter?
• Admin entry?
– Needs for billing procedure

37. Health insurance(MML module)

38. Family History (cont.)
Family History for Budd-Chiari syndrome
(1) Interfamily onset 1.Yes (Relation: )
2.No
(2) Collagen Disease 1.Yes (Disease Name: /Relation: ) 2.No
(3) Blood disease 1.Yes (Disease Name: /Relation: ) 2.No
(4) Venous thrombosis 1.Yes (Disease Name: /Relation: ) 2.No
Collagen
Blood
Disease
Disease
Budd-Chiari
(Interfamily onset)
•Other items
Principal •Marriage between
Budd-Chiari relatives
•Born in closed
community
• What model will be suitable for describing following family history?

39. Family History Archetye

40. Severity
• Many criteria
– TNM, CTCAE, MGFA, Yahr, UC, Chron
– Grading?, Staging?
• Compatibility?
– MG severity(MGFA) vs Parkinson sevierty(Yahr)
• Non sense
– CTCAE/NIH-CTC
• Partially meaningful

41. Problem and diagnostic archetype

42. Modality
• Diagnostic imaging archetype
– X-Ray, CT, MRI..
• Detailed condition?
– Vendor name, Serial No., kVp….
– Procedure
• Operation
• Endoscopy – (Koray Atalag present)

43. Terminology
• SNOMED-CT
– For western countries?
– Applicable in Asia, Africa?
• Possibility of Free/Open/Libre terminology?
– Wikipedia/SNS type terminology 2.0?
– Responsibility?
Don’t we need SNOMED-CT?
Or Do we create terminology?

44. Summary
• Localisation/Internationalisation
– Not to isolate
– Demographics, Insurance
• For intractable disease
– General practice <-> Specialised medical service
• Terminology
– What should we, Japanese do?