The International Health Terminology Standards Development Organisation

1. The International Health Terminology Standards Development Organisation A Perspective by the Potential Charter Members Professor Martin Severs

2. Conference Thought “Minds are like parachutes they only function when open” • Thomas Dewar I am going to be very open but it should be noted we are in a state of negotiation and rapid change so some of the details or labels may change

3. Australia Canada Denmark Lithuania New Zealand United Kingdom United States Plus ongoing discussions with two other countries who are as yet undecided Who are the Potential Charter Members?

4. What is going on now? College American Pathologists [CAP] Potential Charter Members [PCMs] A Group of Countries have got together with the intent of purchasing SNOMED CT from College of American Pathologists [CAP]

5. What is going on now? CAP PCMs Own Manage & Support the SNOMED portfolio IP & IPR Support Requirements New Legal Entity The PCMS have had to specify: What Intellectual Property &IPR they wish to purchase What is required to support it What type of organisation is needed to run it How to fund the operation Fair Share Funding mechanism

6. What is going on now? CAP PCMs Negotiation [Current] Own Manage & Support the SNOMED portfolio IP & IPR Support Requirements New Legal Entity

7. What may happen? CAP International Health Terminology SDO Own Manage & Support the NON- SNOMED CT portfolio SNOMED CT IP & IPR Supply a Support Service CAP Support Service SDO Managed Support Services Open Market Derivative Products New Technical Infrastructure Potential result of successful negotiation

8. SNOMED Enterprise Components SNOMED CT International Release [Core] National Extensions & Releases Open Market Works

9. What is the SNOMED Terminology? (1) • Documents describing the SNOMED CT standard(s) [specification(s)] • The terminology database consisting of: • Concepts • Descriptions • Relationships • Attributes • A set of specified technical tools for supporting development and request processing

10. What is the SNOMED Terminology? (2) • A set of SNOMED allied standards, which enable SNOMED to effectively interoperate with and/or map to, other international information standards • Includes implementation standards for the successful use of SNOMED including: • Translations • Reference implementation instructions

11. Why are we doing this? • More costly develop alternative [$25-50m] • Delay the e-health agenda by developing an alternative [<5 years] • Vendor costs would increase with multiple standards • Avoid huge cost of data migration later [$28B] • Avoid patient safety risks from data migration [both deaths and injury]

12. Why are we doing this? Commercial Benefits • Costs are minimal (compared to an Electronic Patient Record System ~ $100s of millions) • Charges are affordable and shared, and based on the ability to pay • Charges reduce as new Members join OR greater investment in improvement • The investment risks are significantly reduced • Protect Healthcare IT investment now

13. Improved Governance Validated Product Shared Ownership Localisation Support Global Collaboration Compatible with Other Standards Enhanced Contribution Sustainable Model Code of Conduct Simple Licensing Vendor Engagement Clear and transparent management processes Why are we doing this?

14. Why are we doing this? • Validated Product BUT it needs to be better • Leading Global Terminology from independent assessment [Problems noted] • Most ready for Local Implementation • $100 million already invested in SNOMED CT [let us build on the intellectual & financial resources]

15. Three Principle Drivers • Purpose • Support clinical care of patients internationally • Primary and secondary purposes • Integrity • Ensure clinical, organisational and technical integrity • Funding • Stable and secure governance structure • Financial sustainability

16. What is intended to be included? • SNOMED CT and its allied standards with their artefacts and associated Intellectual Property and Intellectual Property Rights • Inclusions are based on Two Tests • Content necessary for international conformance and interoperability • Standards and policies required to maintain the principles

17. What is intended to be included? • A set of requirements with products and performance metrics delivered through: • A set of services to be delivered by CAP over 3-5 years • Would include some contract/license migration • A set of services to be delivered by the • SDO or • SDO subcontractor or • National Release Centres

18. How is it Governed and Managed? • Legal Entity is hoped to be a Danish Society • ‘Not for Profit’ type organisation, but has an unusual name ‘Commercial Society’ • The legal entity holds liability not the Members of it • Described in its Articles of Association which will be published and open • Registered in Denmark

19. Europe The Americas Asia and Oceania Africa and theMiddle East Global MembershipGlobal Outlook

20. SDO Structure GENERAL ASSEMBLY Harmonisation Boards Vendor Forum ManagementBoard Content Committee Technical Committee Research & Innovation Committee Finance & Operations Committee Working Groups Working Groups Task & Finish Groups Research Teams

21. SDO Structure GENERAL ASSEMBLY Harmonisation Boards Vendor Forum ManagementBoard Content Committee Technical Committee Research & Innovation Committee Finance & Operations Committee The financial framework ends above the line i.e. WG’s will normally NOT be funded Working Groups Working Groups Task & Finish Groups Research Teams

22. New SNOMED Enterprise Model National Release Centre SNOMED SDO National Release Centre National Release Centre Local/National Health Entities National Release Centre Shared technology environment enables collaboration

23. Membership and Licenses • Member [Countries] • Governments or their responsible agencies • Access by ALL citizens and users within the jurisdiction • Charter Members have Management Board Rights until 2011 • Vendor License • Required in non-member states when SCT is used for money generating activities • Additional benefits • Affiliate License • Required in non-member states when SCT is required for R&D, interest, etc [postage and package fee]

24. Emergent Phenomena • PCMs • View of a standard is the specification, the software product and its implementation guidance: All need to be kept in alignment in real time. Maintenance is key • Want to see increasingly specific requirements and performance metrics • Explicit balloted and endorsed production process standards • Perceive the quality of the terminology as important as the quality of the finances

25. Emergent Phenomena • PCMs • Are contemplating both internal and external quality processes; external could • Assess the extent of the quality processes • Adherence to the quality process • Recommend actions for the future • Are aware of real world tensions between contribution and alignment, innovation and consolidation, systemic desirability and practical feasibility

26. Emergent Phenomena • There needs to be the purchase of a new technical infrastructure over the next 5 years starting as soon as possible • The capacity in terminology competencies and related subjects needs to be improved • Accreditation of organisations and certification of individuals may need to be considered

27. Conclusion • We will uphold the principles of the endeavour • We are committed as 7 countries to work together and with any other willing partners to make SNOMED CT and its Allied Standards: • Available • Accessible • Open to • Valued by • Patients, Clinicians, Health Informaticians, Policy Leads, Managers & Vendors across the world

28. Please wish us well!