Semantic Interoperability Deployment & Research Roadmap

1. Semantic Interoperability Deployment & Research Roadmap Veli Stroetmann, empirica with Alan Rector, UNIMANDipak Kalra, UCLBedirhan Ustun, Pierre Lewalle, WHO Karl Stroetmann, Benjamin Jung, empirica Pieter ZanstraJean Marie Rodrigues, UJMMartti Virtanen, UUGyorgy Surjan, ESKI i2010 Subgroup on eHealth meeting21 February 2008, Brussels

2. What are we talking about? Defining IOp: Health system interoperability is the ability, facilitated by ICT applications and systems, • to exchange, understand and act on citizens/patient and other health-related data, information and knowledge • among linguistically and culturally disparate clinicians, patients and other actors • within and across health system jurisdictions in a collaborative manner

3. Why do we need Semantic IOp? Health system priorities and goals To support the goals of greater patient safety, better quality of care, chronic disease management, extended homecare or patient empowerment, clinical meaning (data, information, knowledge) must be expressed consistently • to enable the safe, meaningful sharing and combining of health record data between heterogeneous systems and actors / care providers; • to enable the integration and safe use of computerised protocols, alerts and care pathways by EHR systems; • to link EHR data to explanatory and educational materials to support patient and family engagement and professional development; • to ensure the necessary data quality and consistency to enable rigorous secondary uses of longitudinal and heterogeneous data for public health, research, health service management.

4. Roadmap: Recommendations - General Principles • Focus on concrete, immediate needs and real use cases with expected high benefits & lower costs • Terminologies should have a well defined scope and purpose • be delivered against well defined, realistic time scales • Separate: • Ontology - what you mean • Language - how you say it • Interface - how you find it • Involve vendors/industry and human end users - clinicians, citizens • Be responsive • Be open, collaborative and participative • Make it multilingual and multicultural • Focus on Quality Assurance and Reproducibility • Use today’s technology • modern ontology languages, Web 2.0, “Just in time”

5. Some Recommendationson Structures and Process • Governments to develop, implement and sustain longer-term visions, objectives and measures • Establish national centres for multilingual, multicultural adaptation of international classifications including SNOMED • Link them in a well-managed European network of Competence Centres • Establish a European Network of Terminology Servers • Assure sustainability and scalability • It must be maintained to be useful • Beware of silver bullets

6. Socio-economic Assessment: Optimising Semantic IOp

7. Terminologies:SNOMED-CT- Current Assessment • Controlled vocabulary and identifiers • Well managed but slow response time • Hierarchies and relations • Unusable • Too unreliable to depend on to behave as documented • Systematically flawed in principle • Limited by software and logic limitations from early 1990s • Cost of repair probably exceeds cost of rebuilding - but still modest • Multilingual / Multicultural support • Minimal • Neither understood nor a priority for the IHTSDO • Spanish and Canadian-French versions might appear • Openness and accessibility to Social Computing • Unusable - remains effectively closed • Not generally available on the Web • Opportunity cost of participation prohibitive • Influencing policy difficult

8. Terminologies: Selected Recommendations • Support for specific initiatives between ICD/WHO ISO and SNOMED to develop ICD-11 along with mappings to/from SN • Support feasibility study (select subset of ca. 25,000 terms / use case) of reformulation of SNOMED to • build reliable hierarchies & relations • develop multilingual support • introduce social computing tools • empirically assess individual, organisational and societal benefits & costs • Support open tools for terminologies that link up to SNOMED • Support social computingefforts (Web 2.0) on ICD-11 • Develop language technologies • Text extraction to build new terms and encode natural language • Text generation to present and for QA • User involvement & ownership, a series of centres & initiatives • Support training at all levels

9. Roadmap for SIOp Deployment & Research - Ontologies 2021 Central Reference Services Sustainable Centres for Selected Ontologies Policy with MS on future use of hierarchies & relations 2016 Toolkit for HL7 messages & archetypes binding 2014 Large Scale Environment 2012 Sustainable framework with EU Industry for effective standards development Statistical extension of QA Intern. Biobanking collaboration Multilingual-cultural adaptation Local mappings to UMLS 2011 Formal QA of subset 2010 Actions arising from consultations Collaboration with EBI and NBCO Social Computing based Terminology Service Research on consequences of different commitments Multilingual-cultural subsets 2009 European Centres of Excellence Feasibility Study & reformulation of subset Ongoing consultations Tools for Terminfotest 2008 Toolset forFeasibility Study SNOMED LOINC, DICOM Terminolo-gies & EHRs Ontologies GenomicsTransl. Medicine Socio-Econ. Issues

10. Roadmap: Ontologies Action Plan

11. Roadmap EHR: Basic elements and short term actions • Effective, functional EHR systems need: 1. Generic reference models for representing clinical (EHR) data e.g. EN 13606, HL7 CDA, openEHR Reference Model 2.Agreed clinical data structure definitions e.g. openEHR archetypes, HL7 templates, generic templates and data sets 3.Clinical terminology systems e.g. LOINC, SNOMED-CT • Areas needing adoption (short term): • Agree on a generic model for EHR communications: consider EN13606 • Adopt a standardised approach for representing and sharing of clinical data structure specifications: agree to use archetypes / templates • Collaborate on key use cases for shared care & patient safety, and on defining & tidying up the corresponding terminology/SNOMED-CT sub-sets • Seed clinical fora to develop care pathways and archetypes to meet the needs of safe and evidence based care in different medical domains and disciplines • Strengthen clinical user training in the use of EHRs, terminology and structured records

12. Roadmap EHR: Medium term actions • Areas needing wide-scale evaluations: • Develop best practice in archetype design • Establish useful exemplars of SNOMED-CT sub-sets being adopted within EHR systems and delivered in meaningful ways to clinical users • Develop the business rules and validation processes • Identify and evaluate the benefits for various stakeholders & health systems • Areas needing investments: • Industry sponsored or nationally supported open source approaches for: • Archetype & template authoring and validation tools • Terminology servers, term browsers for SNOMED CT, support for term coordination • Global multi-cultural dimension - not just term translation but internationalisation across health care paradigms and cultural differences

13. Roadmap for SIOp Deployment & Research - EHR 2021 Term Binding GlobalExperience Test 2016 Repositories Acceptance Evaluation Consistency Test HL7 Terminfo Adaptable Clinical Applications QA & Certification 2014 Link EHR to Educational Material EHR Visualisation Applications Terminology ServersTerm Browsers 2012 Best PracticeA. Design Business Rules for TC 2011 Agree on SIOP Goals for PHR Authoring/Validation Tools SNOMED-CT Subsets 2010 Improve Inter-nationalisation Care Pathways Policies on SN Term Coordination (TC) 2009 Standardised RepresentionClinical Data Structures GenericModel for EHR Communication 2008 EHR/TerminologyUser Training Key Use Cases Reference Model Archetypes Terminology SNOMED-CT Applications Socio-economic Issues

14. Roadmap Public Health: Long term goals • Consistent use of EHRs as person-based health records in clinical settings • Interconnecting health service providers so health information can be exchanged through interoperable digital means in a standard fashion • Research to prove the comparability of digital information with analog traditional measures used for monitoring and evaluation in various health inf. systems

15. Roadmap Public Health: Actions Requirements for SIOp: • Interconnection tools • Identification management • Common web services • Security technologies • Mechanisms for ensuring the sustainable operation of these components on a widespread and publicly available basis Action points: • Enable common standards to allow data exchange on predefined key variables & compilation of content • Compile data across populations and across health care providers • Link data across multiple care settings • Compare data across regions, time or populations • Set up organizational and legal regulations in a sustainable fashion • Develop global registries of standardized information models and related metadata

16. Roadmap for SIOp Deployment & Research – Public Health 2021 2016 2014 Metadata for populations, settings and GIS BioBanking Mandate the organisation of PH information gathering Case-MixGrouping 2012 Online Epidemiology on selected conditions 2011 Patient Flow/ Statistics Common Standardsfor Content IPR, Ownership 2010 International Health Regulations 2009 Legal Requirements: Liability, Security, Privacy Linkage toPopulation Registries Common Standardsfor Exchange Electronic Death Certifiation Predefined Reportable Diseases 2008 Classifications Demography Biosurveillance Public Health Infrastructure Socio-economic Issues

17. Final Report: Roadmap Matrices & Action Plans Roadmap Matrix on Ontologies (excerpt) [1] Incl. Pharma

18. Final Report: Roadmap Matrices & Action Plans

19. Proposal: Building a European Semantic IOp Knowledge Base SemanticHEALTH Wiki • Semantically linked set of documents • Collaborative environment (discussion page open for everybody) • Extensibility

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

21. Thank you for your attention! Further information: www.SemanticHEALTH.org semantichealth@eski.hu Veli Stroetmann for the SemanticHEALTH consortium Communications & Technology Research Bonn, Germany veli.stroetmann@empirica.com