IHTSDO Position Statement

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IHTSDO Position Statement
Martin Severs
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Context

• This is a young organisation five months old
• Owned the Intellectual Property for four months
• It has a valued and valuable community of
  practice
• Balancing
• Alignment with contribution
• Strong governance with timely and efficient
  decision making
• Large wish list with an open and explicit funding
  envelope
• Desire for rapid progress with personal and
  cultural sensitivities

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The Vision

• To enhance the health of humankind by
  facilitating better health information
  management
• To contribute to improved delivery of care by
  clinical and social care professions
• To facilitate the accurate sharing of clinical
  and related health information, and the semantic
  interoperability of health records

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Achieving the Vision will require

• A globally co-ordinated effort
• Agreement on a core Terminology for recording and
  sharing of health information
• Pooling of resources to share the costs and
  benefits relating to the development and
  maintenance of the Terminology Products
• A consistent message to industry to promote the
  uptake and correct use of the Terminology
• Active harmonization activity with other SDOs

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The purpose of the IHTSDO

• To acquire, own and administer the rights to
  SNOMED CT and other relevant assets
  (collectively, the "Terminology Products")
• To develop, maintain, promote and enable the
  uptake and correct use of its Terminology
  Products around the world
• To undertake activities required to achieve these
  purposes

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Three Principle Drivers for the IHTSDO

• 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

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Status of the IHTSDO

• The IHTSDO is a Danish Association
• The Association is a registered not-for-profit
  entity in Denmark 23rd March 2007
• Articles of Association detail the who, what,
  where and how of the Association
• The Association owns the intellectual property
• Intellectual property in SNOMED CT and antecedent
  works (SNOMED 3.5, RT etc.) transferred to the
  IHTSDO 26th April 2007

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Status of the IHTSDO

• The Members control the organisation and the
  Articles of Association subject to Danish Law
• Nine Charter initial Members
• Australia, Canada, Denmark, Lithuania, USA,
  New Zealand, Netherlands, Sweden, UK
• Active, but preliminary discussions ongoing with
  4 countries
• Expressions of interest from a number of other
  nations we hope will now join!

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Status of the IHTSDO

• Physical office in the IT University in
  Copenhagen
• Web site www.ihtsdo.org
• Three year support contract with the College of
  American Pathologists First IHTSDO Release July
  2007
• New roles within the IHTSDO at outset interim
  recruiting permanent posts
• At outset
• Chief Executive Officer Ulrich Andersen
• Chief Terminologist Kent Spackman
• Chief Quality Officer Ed Cheetham
• Small number of administrative staff

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Licensing of SNOMED CT

• New licensing arrangements through the IHTSDO
  have commenced in May 2007
• Single form of end-user license (Affiliate
  License)
• SNOMED CT will be made much more available for
  research purposes
• Permits world-wide use of SNOMED CT
• Affiliates pay
• NO fees to IHTSDO for use in any Member nation.
  All obligations are met by the Member through
  their IHTSDO membership agreement. Cost-recovery
  is permitted
• Charges as set by the IHTSDO for use in
  non-member nations

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Licensing of SNOMED CT

• Fees are calculated based on a trusted third
  party metric namely the World Bank GNI Atlas
• The Articles have provisions to help the poorest
  countries without distorting the fundamental
  principle of a fair share funding model
• Charges are based on broad categories of
  affiliate use e.g. per hospital AND are banded
  according to World Bank GNI Atlas i.e cheaper in
  poorer countries
• Charges and fees are published on the IHTSDO web
  site
• Aim Simplicity and cost minimisation of
  licensing for the IHTSDO AND Affiliates

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Understanding Licensing
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IHTSDO Structure
GENERAL ASSEMBLY
Management Board
Harmonisation Boards
Affiliate Forum
Quality Assurance Committee
Research Innovation Committee
Technical Committee
Content Committee
Research Teams
Working Groups
Working Groups
Working Groups
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IHTSDO Structure
GENERAL ASSEMBLY
Management Board
Harmonisation Boards
Affiliate Forum
Quality Assurance Committee
Research Innovation Committee
Technical Committee
Content Committee
Research Teams
Working Groups
Working Groups
Working Groups
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General Assembly as at 25th August 2007

• All places are filled
• Meets twice per year April and October
• Approves Budget, Work Plan, MB and Committee
  members
• Reviews Annual Report and annual audited accounts
• Met twice third meeting here in Brisbane
• Minor changes to Articles of Association
  published 30th June 2007
• Voted on the Committee members and elected
  representatives
• Agreed a high level work plan and budget
• Clear feedback to the Management Board on issues
  of governance

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IHTSDO Structure
GENERAL ASSEMBLY
Management Board
Harmonisation Boards
Affiliate Forum
Quality Assurance Committee
Research Innovation Committee
Technical Committee
Content Committee
Research Teams
Working Groups
Working Groups
Working Groups
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Management Board as at 25th August 2007

• Met 20 times mostly by teleconference
• Internal focus
• Creation of a sustainable organisation to deliver
  the vision, purposes and drivers
• Meeting the Community of Practice
• Working through the new arrangement with CAP
• Working through Member NRC and IHTSDO interface
  issues
• External focus
• Improving internal clarity on harmonisation
  beginning the external dialogue on the reality
• Improving internal clarity on the Affiliate Forum
  planning with Members the co-ordinated dialogue
  with Afiliates on the reality

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Enterprise Model Member and IHTSDO
National Release Centre
Local/National Health Entities
IHT SDO
National Release Centre
National Release Centre
National Release Centre
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IHTSDO Structure
GENERAL ASSEMBLY
Management Board
Harmonisation Boards
Affiliate Forum
Quality Assurance Committee
Research Innovation Committee
Technical Committee
Content Committee
Research Teams
Working Groups
Working Groups
Working Groups
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Committees as at 26th August 2007

• Met for the first time this weekend storming
  and norming phase
• Each Committee has in place
• Management Board Chairman and Deputy Chairman
• Member representatives see Affiliate Forum
• Designated Officer
• Component responsibility for aspects of work plan
• Worthy of note that Members have nominated and
  individuals have been elected from outside member
  jurisdictions

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IHTSDO Structure
GENERAL ASSEMBLY
Management Board
Harmonisation Boards
Affiliate Forum
Quality Assurance Committee
Research Innovation Committee
Technical Committee
Content Committee
Research Teams
Working Groups
Working Groups
Working Groups
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Working Groups as at 26th August 2007

• Firm and clear advice from the Community of
  Practice in Chicago, which resulted in
• A small change in the Articles of Association
• Development of a draft Regulation
• Two types of Working Group both are entirely
  open
• Project Group Task focused
• Special Interest Group (SIG) Domain focused eg
  profession (nursing), specialism (mapping)
• Brought forward existing Working Groups and plan
  to transform them following Committee advice in
  light of the Work Plan and the approved Working
  Group Regulation

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IHTSDO Structure
GENERAL ASSEMBLY
Management Board
Harmonisation Boards
Affiliate Forum
Quality Assurance Committee
Research Innovation Committee
Technical Committee
Content Committee
Research Teams
Working Groups
Working Groups
Working Groups
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Possible Affiliate Forum Model 26th August
2007
Member Affiliate Forum
IHTSDO Affiliate Forum
Non-Member Affiliate Forum
Local/National Health Entities
Member Affiliate Forum
Draft Proposals for discussion with Affiliates
are under consultation with Members 28-29 August
2007
Member Affiliate Forum
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Fixed Attributes of the Affiliate Forum

• Act
• Advise the IHTSDO directly with Management Board
• Support
• Member IHTSDO responsibilities as set out in
  the Articles
• Enable
• Nomination of Committee representatives from
  Affiliate Forum
• Endorsed by
• General Assembly
• Acceptable to
• Affiliates
• Implemented by
• April 2008

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IHTSDO Structure
GENERAL ASSEMBLY
Management Board
Harmonisation Boards
Affiliate Forum
Quality Assurance Committee
Research Innovation Committee
Technical Committee
Content Committee
Research Teams
Working Groups
Working Groups
Working Groups
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Harmonisation Boards as at 26th August 2007

• Detailed discussion with WHO
• Preliminary discussion with
• HL7
• (Sub) Committee for the Nomenclature, Properties
  and Units of IFCC-IUPAC
• WONCA
• Planned discussion with
• LOINC

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WHO FIC IHTSDO Harmonisation Board

• Discussions and a formal workshop between IHTSDO
  WHO FIC representatives
• Initial Agreement on
• Product A set of high quality, maintained
  mappings between SNOMED CT and WHO FIC
  Classifications to meet the stated use cases
• Scope WHO owned international classifications,
• Priority ICD 10 second edition
• Use cases for priority
• Integrated and shared process for progress
  organisational and technical
• Goal To have the initial WHO FIC IHTSDO
  Harmonisation Board on February 4th 2008