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

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

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

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

What is going on now? 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 PCMs CAP IP & IPR Support Requirements New Legal Entity Own Manage & Support the SNOMED portfolio Fair Share Funding mechanism

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

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

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

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

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

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]

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

Why are we doing this? 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? 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]

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

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

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

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

Global Membership Global Outlook Asia and Oceania Africa and the Middle East Europe The Americas

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

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

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

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]

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

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

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

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

Please wish us well!