Localisation of archetype to validate feasibility of ISO 13606/openEHR in

Japan

Shinji KOBAYASHIEhime university

Agenda

• Localisation / Internationalisation– Localisation/Isolation– Translation, adaptation

• ISO 13606/openEHR adoption in Japan– openEHR.jp works– Intractable disease surveillance program– Archetype localisation/adaptation

• Summary

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

Localisation/Isolation

International community

Regional community Regional

community

Regional community

Regional community

International community

Regional community

Internationationalisation IsolationLocalisation

International community

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?

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

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 )

Form localisation

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

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

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

communityhttp://openehr.jp/

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!

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.

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)

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

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…

‘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

‘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

List of ‘tokutei shikkan’01 Behcet disease02 multiple sclerosis03 myasthenia gravis 04 systemic lupus erythematosus (SLE)05 subacute myelo-optico-neuropathy (SMON)06 aplastic anemia07 sarcoidosis08 amyotrophic lateral sclerosis (ALS)09 scleroderma , dermatomyositis, or

polymyositis10 idiopathic thrombocytopenic purpura11 (1) polyarteritis nodosa (2) microscopic

polyangiitis12 ulcerative colitis13 Takayasu arteritis14 thromboangitis obliterans, Buerger disease15 pemphigus16 spinocerebellar degeneration17 Crohn disease18 fulminant hepatitis19 malignant rheumatoid arthritis (rheumatoid

vasculitis)20 Parkinson disease and related diseases -

progressive supranuclear palsy -corticobasal degeneration -Parkinson disease

21 amyloidosis 22 ossification of posterior longitudinal

ligament (OPLL) 23 Huntington disease 24 moyamoya disease 25 Wegener granulomatosis 26 dilated cardiomyopathy, congestive

cardiomyopathy

27 multiple system atrophy -striatonigral degeneration (SND) -olivopontocerebellar atrophy (OPCA) -Shy-Drager syndrome

28 epidermolysis bullosa 29 pustular psoriasis 30 disseminated spinal canal stenosis 31 primary biliary cirrhosis 32 severe acute pancreatitis33 idiopathic necrosis of the femoral head 34 mixed connective-tissue disease35 primary immunodeficiency syndrome 36 idiopathic interstitial pneumonia37 retinitis pigmentosa 38 prion diseases -Creutzfeldt-Jakob disease

(CJD) -Gerstmann-Straussler-Sheinker syndrome -fatal familial insomnia

39 primary pulmonary hypertension40 neurofibromatosis type 1,

neurofibromatosis type 241 subacute sclerosing panencephalitis (SSPE) 42 Budd-Chiari syndrome43 idiopathic chronic pulmonary

thromboembolism with pulmonary hypertension

44 lysosomal storage diseases -Fabry disease -other lysosomal storage diseases

45 adrenoleukodystrophy (ALD)46 Familial Hypercholesterolemia

( Homozygous type) 47 spinal muscular atrophy (SMA) 48 spinal and bulbar muscular atrophy (SBMA)49 Chronic Inflammatory Demyelinating

Polyneuropathy

50 Hypertrophic cardiomyopathy51 Restrictive cardiomyopathy52 Mitochondrial disease53 lymphangioleiomyomatosis54 Severe erythema multiforme (Acute Phase)55 Ossification of the ligamentum flavum56 Diencephalo-hypophysial dysfunction -

Syndrome of abnormal secretion of prolactin -Syndrome of abnormal secretion of gonadotropin -Syndrome of abnormal secretion of antidiuretic hormone -Syndrome of abnormal secretion of Thyroid stimulating hormone -Cushing disease -Acromegaly -Hypopituitarism

615,568 patients registered

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

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

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

Traiinng@Melbourne

review MindMap

Archetype prototyping

2010/Feb.

Hard discussion in Cape town

Clinical research form

Mindmap designed for clinical research form, first trial

Concepts confusion (eg. SLE form)

• Skin and mucous symptom– Skin itching– Butterfly rash– discoid erythema– Photosensitive– Raynaud's phenomenon– Oral or nasal ulcer– Alopecia– subcutaneous nodule– ulcer or infarction– Finger gangrain– Livedo reticularis

-symptom

-diagnosis(L65.9)

-inspection

-inspection or diagnosis

-inspection

-diagnosis

-diagnosis

-diagnosis

-diagnosis

-diagnosis

-inspection

MindMap version 2

Mindmap version 3

MindMap current version

Archetype localisation/adaptation

• Address• ESR/FBC• Insurance• Family history• Severity?• Modality?• Terminology

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

FBC archetype

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?

Blood cell classification(microscopic)

• Myeloblast• Promyelocyte• Myelocyte• Metamyelocyte• Proerythroblast• Basochromatic-• Orthochromatic• Normochromatic• Megaloblast

• Erythroblast• Reticulum• Monoblast• Promonocyte• Phagocyte• Lymphoblast• Plasmacyte• Megakaryocyte• Promegakaryocyte

Insurance

• Universality?– Public, private, conditions, country– Domestic matter?

• Admin entry?– Needs for billing procedure

Health insurance(MML module)

Family History (cont.)

• What model will be suitable for describing following family history?

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

Principal

Budd-Chiari

Budd-Chiari (Interfamily onset)

Blood Disease

CollagenDisease

•Other items• Marriage between

relatives• Born in closed

community

Family History Archetye

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

Problem and diagnostic archetype

Modality

• Diagnostic imaging archetype– X-Ray, CT, MRI..• Detailed condition?

– Vendor name, Serial No., kVp….

– Procedure• Operation• Endoscopy – (Koray Atalag present)

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?

Summary

• Localisation/Internationalisation– Not to isolate– Demographics, Insurance

• For intractable disease– General practice <-> Specialised medical service

• Terminology– What should we, Japanese do?