1. Metadata Open Forum 2008 ISO/IEC/IEC 11179: Metadata Registries A Tutorial from the National Cancer Institute Dianne M. Reeves, RN, MSN National Cancer Institute CBIIT Tommie G. Curtis, MS Science Applications International Corporation (SAIC)

2. Metadata Open Forum 2008 - Goals Explain the role of ISO/IESC 11179 in capturing structured metadata Discuss the added value of binding vocabulary/terminology, to ISO/IEC administered items Estimate the level of effort needed to collect and maintain metadata Assess and justify metadata registration needs for an organization

3. Metadata Open Forum 2008 – Activities Review and discuss the ISO/IEC 11179 standard Examine a registry implementation of ISO/IEC 11179 Map source metadata to registry content Utilize semantics to bind to metadata Assess the value and role of an ISO/IEC 11179 registry in an organization

4. Metadata Open Forum 2008 – ISO/IEC 11179 Metadata Registries What is the Standard? Six-part standard defining various aspects of metadata development and metadata registry management Common way of representing metadata A “Grammar” for describing data –Descriptive (pattern for creating meaning) –Prescriptive (pre-existing rules for the pattern)

5. ISO/IEC 11179 Information technology Standard Metadata Open Forum 2008 – ISO/IEC 11179 Information technology Standard ISO/IEC 11179 Part 1: Framework ISO/IEC 11179 Part 2: Classification ISO/IEC 11179 Part 3: Registry metamodel and basic attributes ISO/IEC 11179 Part 4: Formulation of data definitions ISO/IEC 11179 Part 5: Naming and Identification Principles for Data Elements ISO/IEC 11179 Part 6: Registration Publicly Available from: http://metadata- standards.org/11179/

6. Basic ISO/IEC 11179 Metamodel Components Metadata Open Forum 2008 – Basic ISO/IEC 11179 Metamodel Components Data_Element_Concept 1..1 0..* +specifing 1..1 +having 0..* data_element_concept_conceptual_domain_relationship 0..* 1..1 +providing_representation_to 0..* +represented_by 1..1 expression 0..* 1..1 +represented_with 0..* +providing_representation_for 1..1 representation 0..* 1..1 +representing 0..* +specified_by 1..1 specification Data Element Concept Conceptual_Domain Conceptual Domain Data_Element Data Element Value_Domain Value Domain Perception Representation

7. Metadata Open Forum 2008 – Terms and Definitions for ISO/IEC 11179 Data Element: A unit of data for which the definition, identification, representation, and permissible values are specified by means of a set of attributes. Data Element Concept: An idea that can be represented in the form of a data element, described independently of any particular representation. Conceptual Domain: A set of valid Value Meanings. Representation Class: A classification of data elements based upon the type of representational form. Value Domain: A set of attributes describing representational characteristics of instance data with or without enumerated permissible values. Value Meaning: A member of the set of finite allowed inventory of notions that can be categorized for a conceptual domain. Permissible Value: An expression of a Value Meaning expressed in a Value Domain. Data Element Data Element Concept Value Domain Value Meaning Permissible Value Conceptual Domain Representation Class

8. Metadata Open Forum 2008 – Terms and Definitions for ISO/IEC 11179 Data Element Concept: An idea that can be represented in the form of a data element, described independently of any particular representation. - The suggested pattern for creating the meaning of a DEC is further described using Object Class and Property Object Class: The part of the DEC ‘pattern’ pertaining to the thing in the real world. A person, a gene, a vehicle. Property: The part of the DEC ‘pattern’ pertaining to an observable or recordable characteristic of the thing in the real world. These characteristics, or attributes, are those things that help to differentiate instances of one thing of the same type or kind, from another. For example characteristics of a person that differentiate one person from another: Hair color, Eye color, Height, Weight, BSA Data Element Concept Object Class Qualifiers Property

9. Metadata Open Forum 2008 – ISO 11179 - caDSR Implementation Diagram Object Class Chemopreventative Agent Property Name Conceptual Domain Agent Data Element Concept Chemopreventive Agent Name Data Element Chemopreventive Agent Name Value Domain CTEP Drug Names Representation Name Valid Values Cyclooxygenase Inhibitor Doxercalciferol Eflornithine … Ursodiol

10. Metadata Open Forum 2008 – NCI CBIIT Extensions Mandatory Object Class and Property –NCI Compliance ensures that the parts of the semantics are clearly, unambiguously identified –Simplifies development of programs and interfaces that can reliably detect similar or different content (uses the ‘grammar’ to interpret metadata) Value Meanings as Administered Items –Alternate names and definitions –Reference documents –Origins Forms and parts of forms as administered items –Unique identifier –Versioning –Simplify creating and sharing Data Elements –Promote reuse of standards

11. Metadata Open Forum 2008 – NCI CBIIT Extensions Concepts as Administered Items –Provides links to external vocabularies and code systems –Minimal concept information extracted from external vocabulary systems to populate the Administered Item Record to simplify reuse of NCI standardized concepts Preferred name, definition, concept identifier, source vocabulary identification Concepts bound to Controlled Vocabulary –Binding registry semantics to immutable external vocabulary concepts –Provides access to extensive synonymy and semantics represented in ontologies, taxonomies and code systems where the concepts are more fully described Extended use of Concepts: Property, Representation, Value Meanings, Value Domains, Conceptual Domain, etc. –Enhances programmatic interpretation of semantics –(*ISO/IEC 11179 Ed. 2 specifies concepts as optionally associated with Object Class)

12. Metadata Open Forum 2008 – NCI CBIIT Extensions Applied business rules to make the addition of semantics mandatory for Object Class, Property, Representation, Qualifiers, and Value Meanings Include Preferred Question Text Next steps:  Forms as administered items  CSI as administered items

13. Metadata Open Forum 2008 – NCI CBIIT Business Rules for Metadata Development and Maintenance Metadata Development –Naming and Definitions –Semantic Assignment –Completeness Criteria –Ownership and Usage –Status Assignment Metadata Maintenance –Updating/Modifying –Versioning –Status assignment

14. Metadata Open Forum 2008 – NCI CBIIT Best Practices Describe common processes Improve quality and encourage reuse Facilitate training and understanding Documented in FAQs and documents Encourage use of data standards

15. Metadata Open Forum 2008 – Enterprise Vocabulary Services - Thesaurus Controlled vocabulary resources for caCORE and the cancer research community Vocabulary Products and Services –NCI Thesaurus –NCI Metathesaurus –External vocabularies NCI Thesaurus - controlled vocabulary source for metadata –Has excellent coverage of cancer terminology –Expands based on needs for additional terminology –Based on concepts rather than terms –Each concept has a unique identifier or CUI with definitions and synonym

16. Preferred Name Synonyms Definition Relationships Concept Code Metadata Open Forum 2008 – Enterprise Vocabulary Services - Thesaurus

17. Metadata Open Forum 2008 – Curation: Manual Curation Use a suite of caDSR Tools: CDE Browser to locate existing metadata Curation tool to create metadata –Applies 11179 rules for well formed metadata Administration tool to create classifications, classification scheme items

18. Metadata Open Forum 2008 – ISO/IEC 11179 Implementation in NCI CBIIT- Browser

21. Metadata Open Forum 2008 – NCI CBIIT and caBIG™ Data Standards

22. Metadata Open Forum 2008 – NCI CBIIT and caBIG™ Data Standards - Details

23. Metadata Open Forum 2008 – CDE Browser – Advance Search Long name: Permissible Value: Workflow Status:

24. Metadata Open Forum 2008 – Curation Tool

27. Example – Searching for a Representation Term in the Curation Tool brings up The list of 37 preferred Representation terms.

28. Metadata Open Forum 2008 – Preferred Representation Terms Anatomic Site Category Code Count Date Date/Time Dose Duration Float Frequency Grade Identifier Ind-2 Ind-3 Indicator Integer Interval Measurement Name Number Range Rate Reason Result Scale Score Source Specify Stage Status Text Time Type Unit of Measure Value

29. Metadata Open Forum 2008 – Curation Tool

33. Metadata Open Forum 2008 – Administration Tool

37. Metadata Open Forum 2008 – Ways to Register Metadata into the caDSR Manual Curation Model Loading Batch Loader

38. Metadata Open Forum 2008 – Sources of Metadata

39. Metadata Open Forum 2008 – ISO/IEC 11179 Implementation in NCICBIIT

41. Metadata Open Forum 2008 – Curation of Content: Data Element

42. Metadata Open Forum 2008 – Curation: Loading a Model into caDSR

43. Metadata Open Forum 2008 – ISO/IEC 11179 Administered Items

44. Metadata Open Forum 2008 – ISO/IEC 11179 Administration Record

45. Metadata Open Forum 2008 – Creation of Metadata: Data Element Concept What guidance does the ISO/IEC 11179 Standard give for DEC creation? Conceptual Domain Object + Qualifiers (optional) Property + Qualifiers (optional) Administration Record: –Data Identifier (‘Public ID’) –Version –Long, Short, and alternate names –Definitions (we use 3 types) –Effective date –Until date –Classifications –Origin –Administrative status –Registration status –And more characteristics…

46. Metadata Open Forum 2008 – Creation of Metadata: Value Domain What guidance does ISO/IEC 11179 give for VD creation? Conceptual Domain Representation term + Qualifiers Data Identifier (‘Public ID’) Version Long, Short, and alternate names Definitions Effective date Until date Classifications Origin Administrative Status Registration Status Data type Field length UOM Permissible values/Value meanings/Concepts/Value meaning Descriptions Reference Documents

47. Metadata Open Forum 2008 – Creation of Content: Data Element What guidance does ISO/IEC 11179 give for DE creation? DE VD Document Text – Question used on a form Definition Effective Date Until Date Data Identifier Version Classifications Documents Origin Administrative status Registration Status Reference Documents

48. Metadata Open Forum 2008 – caDSR Organization of Content Organization of Metadata in caDSR By Context or owning group By Model (UML Browser) By Classification (CS) / Classification Scheme Item (CSI) –Different ‘types’ of CS’s represent Business Categories, Data or Web Services, Items used together, etc. By Form

49. Metadata Open Forum 2008 – Organization of Metadata in caDSR: Contexts A context is a group owning metadata Context administrator Business rules for aspects of metadata curation and maintenance Privileges for an identified set of users/curators

50. Metadata Open Forum 2008 – NCI CBIIT Data Quality Metrics Analyze the current content and identify issues Clean-up quality of content in the caDSR by addressing incomplete, inconsistent, and redundant metadata in the caDSR Establish best practices and business rules to prevent the creation of data quality problems in the future Strengthen the reuse of metadata across user communities

51. Metadata Open Forum 2008 – Cleanup Activities Identify incomplete, redundant, and inconsistent CDEs and their components Reduce duplication Remove orphans Ensure conformance with current business rules Continue to monitor content over time

52. Metadata Open Forum 2008 – Example Metrics Report - Concepts – Baseline Update Number of Concepts by Workflow Statuses 3/19/20084/16/2008 RELEASED11,51811,603 RETIRED ARCHIVED78 RETIRED DELETED44 RETIRED PHASED OUT17 RETIRED WITHDRAWN37 Total Number of Concepts11,58311,669

53. Metadata Open Forum 2008 – caDSR Users: Training Courses

54. Metadata Open Forum 2008 – Role: Context Administrator

55. Metadata Open Forum 2008 – Role: Subject Matter Expert/Content Expert

56. Metadata Open Forum 2008 – Training Course Materials

57. Metadata Open Forum 2008 – What is the value of using ISO/IEC 11179? Standardize structure and content Promote reuse of standards Enhance the ability to successfully search metadata

58. Metadata Open Forum 2008 – What organizations are using ISO/IEC 11179? Australian Institute of Health & Welfare Nordic Common Data Elements Registry UDEF (Universal Data Element Framework) UK – cgMDR (Cancer Grid Metadata Registry) US - National Cancer Institute US - Department of Justice US - Environmental Protection Agency or EPA US – United States Health Information Knowledge Base Others?

59. Metadata Open Forum 2008 – What is Needed for a Metadata Program? Management support Commitment of resources A registry tool Business Rules Best Practices Quality Measurement Plan Training program

60. Metadata Open Forum 2008 – Resources/References caDSR SDK Guide: ftp://ftp1.nci.nih.gov/pub/cacore/SDK/v3.2.1/caCORE_S DK_3.2.1_Programmers_Guide.pdf caCORE User Application Manual: ftp://ftp1.nci.nih.gov/pub/cacore/NCICBapplications/NCI CBAppManual.pdf caCORE Technical Guide: ftp://ftp1.nci.nih.gov/pub/cacore/caCORE3.2_Tech_Guid e.pdf caDSR Homepage: http://ncicb.nci.nih.gov/core/caDSR

61. Metadata Open Forum 2008 – Contact Information NCI CBIIT Instructor: Dianne Reeves (reevesd@mail.nih.gov) caDSR Home Page: http://ncicb.nci.nih.gov/NCICB/infrastructure/cacore_ove rview/cadsr caDSR Training Home Page: http://ncicb.nci.nih.gov/NCICB/training/cadsr_training caDSR Training ListServ: https://list.nih.gov/archives/cadsr_training-l.html http://list.nih.gov

62. Metadata Open Forum 2008 – Your Questions Thank you for your attention! Please join us on a future caDSR Training teleconference, or send an email.