Localisation of archetype to validatefeasibility of ISO 13606/openEHR in Japan Shinji KOBAYASHI Ehime 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 Regional Regional community community International communityInternational community International community Regional Regional Regional community community community Internationationalisation Localisation Isolation
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 localisationSometimes, 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 community http://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
The Specified Disease(tokuteishikkan) 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
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
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?
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?