1. Connecting for Health Preliminary Terminology Consensus Statements
James J. Cimino,M.D.
May 21, 2003
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2. Overview
The development and widespread adoption of a comprehensive and common set of terminologies is critical to realizing an interoperable health care system.
On April 4, 2003, Connecting for Health convened experts to move the agenda forward on key issues related to terminology.
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3. Objectives
Explore the need for the development and distribution of a comprehensive terminology set for health care.
Develop a clear understanding of the relationship among terminologies, including those that are and are not currently mapped into UMLS.
Discuss methods for mapping additional terminologies into UMLS.
Specify additional work that should be undertaken to make the UMLS terminologies usable in real systems.
Determine highest priority gaps to fill in current terminologies.
Generate options for the long-term maintenance and distribution of terminologies; identify strategies that will encourage providers to switch to common terminologies.
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4. Outcomes
Developed series of preliminary consensus statements addressing terminology requirements and processes; statements are currently under review by the group.
Additional statements have been submitted and are under discussion.
Participation has been active and the views of all stakeholders are being represented.
All consensus statements presented here should be considered as a draft and will be refined in future discussions.
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5. Draft Consensus Statements: Terminologies Requirements
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6. Requirements
Consensus Statement 1 - An interoperable health care system requires an information terminology set that is:
Cross domain
Open
Inclusive
Promotes movement and interpretation of health care data
Utilizes appropriate domain expertise
Allows accurate exchange, aggregation, and interpretation of health care data
Uniform in structure
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7. Requirements
Consensus Statement 2 - Health care terminologies should be integrated into a single reference terminology set. Users require an integrated single reference terminology.
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8. Requirements
Consensus Statement 3 - A single integrated model of health care information is required as a foundation for the integration of current and future health care terminologies. This information model will provide the context for the use of terms and enable interoperability. The integrated model should have the following characteristics:
Crosses all terminology domains
Relies on domain specific contributions
Supports various levels of abstraction
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9. Requirements
Consensus Statement 3 (cont) - The integrated health care information and terminology model should deliver value to the following users:
System developers
Clinicians
Knowledge managers
Pharmaceutical manufacturers
Terminology developers
International bodies
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10. Requirements
Consensus Statement 4 - Health care terminology supports a single systematized way of describing every aspect of the health status and health care of an individual and populations of individuals.
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11. Requirements
Consensus Statement The integrated terminology set should be:
Source transparent
Common to all users
Non-duplicative
Resident in a single repository
Supported by clearly defined responsibilities for maintenance
Designed to provide appropriate credit to contributors
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12. Draft Consensus Statements: Terminologies Process
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13. Process
Consensus Statement 1 - The process for developing the integrated health care information and terminology model should have the following characteristics:
Openness
Meets the needs of all users
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14. Process
Consensus Statement 2 - The same terminologies should be used by all stakeholders.
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15. Process
Consensus Statement 3 - The development, integration, maintenance and adoption of standard terminologies require that a comprehensive set of functions be specified and clear roles and responsibilities assigned. A preliminary functional model is highlighted below.
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16. Terminology Standards Process
Oversight
(includes evaluation)
Information /Terminology Modeling
(Cross Domain)
Integration
(Cross Domain)
Development
Maintenance
Endorsement/
Selection
Distribution
Implementation
Adoption
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17. Process
Consensus Statement 4 - The terminology integration function identified in the above model should have the following characteristics:
Serve the public interest
Participation by all interested parties
Include a coordination and oversight function
Empowered to get through the “brick walls”
Independent of financial interests in a product
Endorsed by Standards Development Organizations (SDOs)
Determines the domain where a specific terminology need should be addressed
Impartial
Utility driven
Accountable
Responsive
Long term funding
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18. Process
Consensus Statement 5 - The terminology integration function encompasses the following responsibilities: oversight, process management, and repository maintenance. Different bodies could carry out each of these roles or they could be combined within a single organization.
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19. Process
Consensus Statement 6 - The terminology integration oversight role should be carried out by an entity with the following characteristics:
Public/private representation
Independent
Stable funding
Authority/mandate (the ability to break down barriers)
Encourage a coalition with sufficient influence, prestige, clout, and support, to act as “tipping point”
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20. Process
Consensus Statement 7 - The goal of terminology integration is “harmonization”. Harmonization is defined as organizations with overlapping terminologies creating a single integrated terminology that is supported by all of the “stakeholder” organizations.
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21. Process
Consensus Statement 8 - Terminology domain boundaries should be clearly defined. Within each domain redundancies should be eliminated.
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22. Process
Consensus Statement 9 - Terminology integration should result in a single terminology within a terminology domain. Where there is duplication, the terminologies should be merged not mapped.
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23. Process
Consensus Statement 10 - The integration process needs to encompass linkages between domains. Owners should be designated as having responsibility for maintenance of the cross-domain linkages. The cross-domain linkages should have the following characteristics:
Scalable
Explicate the significance of the linkage
Represent the medical knowledge associated with the linkages
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24. Process
Consensus Statement 11 - Demonstration projects are needed to determine how to optimize the development and implementation of an integrated health care terminology. The demonstrations should test and evaluate the deployment of standard terminologies over time. The VA, DoD, and Kaiser could be considered demonstrations that are already underway.
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25. Summary and Next Steps Summary Points
There should be an oversight entity.
There needs to be a focal point for process management.
There needs to be a repository for terminologies.
Next Steps
Conduct a series of conference calls with the work group to refine and augment the consensus statements.
Obtain Connecting for Health Steering Group endorsement of consensus statements.
Disseminate consensus statements to the broader community.
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