Abdul-Malik Shakir, Senior Advisor IDX eIntelligence Solutions Group August 30, 2000

1. Applying the Public Health Conceptual Data Model to the Implementation of the National Electronic Disease Surveillance System Abdul-Malik Shakir, Senior Advisor IDX eIntelligence Solutions Group August 30, 2000

2. Presentation Overview • PHCDM Project Update • NEDSS Cooperative Agreement Initiatives • NEDSS Development Coordination Issues • IDX eSG Participation in NEDSS • Identification of next steps PHCDM Governments Project Special Interest Group Presentation

3. PHCDM Project Update PHCDM Governments Project Special Interest Group Presentation

4. PHCDM Project Purpose The purpose of the Public Health Conceptual Data Model (PHCDM) project is to document the information needs of public health so that Centers for Disease Control and Prevention (CDC) and its state and local partners in public health can: • Establish data standards for public health, including data definitions, component structures, code values, and use; • Collaborate with national health informatics standards setting bodies to define standards for the exchange of information among public health agencies, and healthcare providers; • Construct computerized information systems that conform to established data and data interchange standards for use in the management of data relevant to public health. PHCDM Governments Project Special Interest Group Presentation

5. Overall Scope of Work • Development and maintenance of the Public Health Conceptual Data Model (PHCDM) • Development and maintenance of the Public Health High-level Process Model (PHHPM) • Implementation of the PHCDM and PHHPM • Coordination with national data-related standards • Coordination with CDC Program, State, and Local public health data-related initiatives PHCDM Governments Project Special Interest Group Presentation

6. PHCDM Project Goals • Provide a framework for organizing public health data standards and guidelines • Reduce development effort for computerized information systems for public health surveillance • Enhance data exchange capabilities among public health agencies and healthcare providers • Represent public health data needs to national standards setting bodies • Facilitate collaboration between CDC and their state and local partners in public health. PHCDM Governments Project Special Interest Group Presentation

7. PHCDM Jun-Dec 1999 Accomplishments • Created a data model for public health based upon analysis of the database structures of current CDC disease surveillance systems, CIPHER data standards, the HL7 RIM, and other health related information models, and defined a maintenance process for the model. • Reviewed the PHCDM with epidemiologists from within certain program areas of CDC and from state and local public health agencies and updated the PHCDM based upon their critique. • Selected a computerized information system development project to make use of the PHCDM and CIPHER data standards within CDC and developed a workplan for applying the standards to the development effort. • Established Jan-Jun 2000 objectives for the PHCDM project. PHCDM Governments Project Special Interest Group Presentation

8. PHCDM Jan-Jun 2000 Accomplishment • Published the premiere edition of the PHCDM • Participated in the HL7 Reference Information Model (RIM) harmonization process to introduce public health related information needs. • Began development of a public health high-level process model (PHHPM) to provide context for the PHCDM. • Continued to coordinate with CDC programs and partners to endure that their information needs are represented in the PHCDM • Established Jun-Dec 2000 objectives for the PHCDM project. PHCDM Governments Project Special Interest Group Presentation

9. Publication of the Premiere PHCDM PHCDM Governments Project Special Interest Group Presentation

10. HEALTH RELATED ACTIVITY ACTOR PARTICIPATION 1 1 Activity Identifier : SET<II> Actor Type Code : CV 0..* 0..* 0..* 0..* PARTY Activity Mood Code : CV Actor Time Range : IVL<TS> 1 1 1 1 PARTY TO PARTY RELATIONSHIP 1 1 Activity Type Code : CV Party Identifier : SET<II> 0..* 0..* 0..* 0..* Relationship Date Time Range : IVL<TS> Activity Descriptive Text : FTX 0..1 0..1 1 1 Relationship Type Code : CV Activity Status Code : CV ACTIVITY RELATIONSHIP TARGET PARTICIPATION 0..* 0..* 0..* 0..* Activity Date Time : GTS 1 1 Activity Relationship Code : CV Target Type Code : CV 1 1 Activity Critical Date Time : GTS Target Time Range : IVL<TS> 0..* 0..* 0..* 0..* Activity Method Code : CV 0..* 0..* Target Awareness Code : CV 1 1 Subject Site Code : CV Parties MATERIAL RESPONSIBILITY 0..* 0..* 0..* 0..* Interpretation Code : CV INDIVIDUAL Responsibility Type Code : CV Confidentiality Code : CV Birth Date : TS 1 1 Responsibility Date Time Range : IVL<TS> 0..* 0..* Maximum Repetition Number : INT Death Date : TS Material Identifier : II Priority Code : CV Materials Sex Code : CV 0..1 0..1 OBSERVATION 1 1 1 1 Observation Value : ANY PERSON MATERIAL Derivation Expression Text : ST Ethnicity Code : CV Material Identifier : SET<II> 0..* 0..* Race Code : SET<CV> Material Type Code : CV MATERIAL RELATIONSHIP Occupation Code : CV Material Description : FTX Person Name : SET<PN> Material Relationship Type Code : CV Material Date Time Range : IVL<TS> CASE Handling Code : CV 0..* 0..* Confirmation Method Code : CV Danger Code : CV NON PERSON LIVING ORGANISM Detection Method Code : CV 1 1 Material Quantity : PQ Species Name : CV Transmission Mode Code : CV Material Name : ST Organism Name : ST Disease Imported Code : CV 1 1 Etiologic Status Code : CV SPECIMEN Source Site Code : CV ORGANIZATION OUTBREAK Organization Name : SET<ON> Outbreak Extent Code : CV Outbreak Peak Date : TS Outbreak Time Range : IVL<TS> 0..* 0..* 0..* 0..* PARTY LOCATION PARTICIPATION FORMAL ORGANIZATION MATERIAL LOCATION PARTICIPATION Participation Date Time Range : IVL<TS> Industry Code : CV Participation Type Code : CV Participation Date Time Range : IVL<TS> INTERVENTION Current Status Code : CV Intervention Reason Code Current Status Effective Date : TS INFORMAL ORGANIZATION 0..* 0..* Intervention Form Code : CV Locations Group Type Code : CV Intervention Route Code : CV 0..* 0..* Intervention Quantity : PQ Strength Quantity : PQ Rate Quantity : PQ 1 1 LOCATION Location Identifier : SET<II> 1 1 REFERRAL LOCATION RELATIONSHIP Location Setting Code : CV 0..* 0..* 1 1 Referral Reason Text Relationship Type Code : CV Location Type Code : CV 1 1 Authorized Visit Amount Relationship Date Time Range : IVL<TS> Location Status Code : CV Referral Description 0..* 0..* 0..1 0..1 Current Status Effective Date : TS Location Narrative Text : FTX NOTIFICATION POSTAL LOCATION PHYSICAL LOCATION Notification Reason Code : CV Street Address Text : AD Health-Related Activities Latitude Quantity : ST Address Directions Text : FTX Longitude Quantity : ST Location Name : ST Property Location Text : FTX TELECOMMUNICATION LOCATION Personal Identification Number : ST Time Zone Text : ST Electronic Address Text : TEL PHCDM Governments Project Special Interest Group Presentation

11. +is_target_for +relates to 1 1 +associates_to +associates 1 1 0..* 0..* <<Active_participation>> <<Stakeholder>> <<Service>> 0..* 0..* +relates +is_target_for 1 1 0..* 0..* ACTOR PARTICIPATION 1 1 +associates_to PARTY +associates HEALTH RELATED ACTIVITY 0..* 0..* <<Service_relationship>> +associates_to 1 1 <<Stakeholder_affiliation>> <<Target>> ACTIVITY RELATIONSHIP PARTY TO PARTY RELATIONSHIP +associates TARGET PARTICIPATION 0..* 0..* 0..* 0..* +associates +relates 0..* 0..* +associates_to 0..* 0..* +is_source_for 1 1 +associates_to +relates to 1 1 +associates 0..* 0..* 1 1 +associates_to +is_source_for 0..* 0..* 1 1 +associates_to +associates_to 0..* 0..* +associates 1 1 MATERIAL RESPONSIBILITY +associates 0..* 0..* +associates ORGANIZATION 1 1 0..1 0..1 0..* 0..* 1 1 +relates <<Material>> +is_source_for MATERIAL <<Material_relationship>> +relates 1 1 +associates_to MATERIAL RELATIONSHIP INDIVIDUAL INFORMAL ORGANIZATION +is_target_for 0..* 0..* <<Referral>> <<Observation>> INTERVENTION <<Organization>> 0..* 0..* REFERRAL OBSERVATION ENTITY FORMAL ORGANIZATION 1 1 +associates PARTY LOCATION PARTICIPATION +associates_to 0..* 0..* <<Person>> 0..* 0..* <<Specimen>> +associates_to PERSON 0..* 0..* MATERIAL LOCATION PARTICIPATION SPECIMEN +associates_to <<Living_subject>> PUBLIC HEALTH NOTIFICATION +associates NON PERSON LIVING ORGANISM +associates 1 1 1 1 CASE +associates LOCATION INFORMATION 0..1 0..1 +is_target_for <<Medication>> 1 1 +relates MEDICATION 0..* 0..* LOCATION RELATIONSHIP +is_source_for OUTBREAK 0..* 0..* +relates 1 1 TELEPHONE LOCATION ELECTRONIC LOCATION POSTAL LOCATION PHYSICAL LOCATION Mapping of the PHCDM to the HL7 RIM PHCDM Governments Project Special Interest Group Presentation

12. Party to Party Relationship <Stakeholder Affiliation> Individual Organization <Organization> New! Person <Person> Non-Person Living Organism <Living Subject> Formal Organization Informal Organization PHCDM Parties Subject Area Party <Stakeholder> Revised PHCDM Governments Project Special Interest Group Presentation

13. HL7 RIM Change Proposals • Desired Changes to the RIM • Add Informal Organization as a specialization of Organization • Add Formal Organization as a specialization of Organization • Add Individual as a specialization of Stakeholder • Make Person a specialization of Individual • Make Living Subject a specialization of Individual • Additional Changes to the RIM • Change the name of Stakeholder to Party • Change the name of Stakeholder Affiliation to Party Affiliation PHCDM Governments Project Special Interest Group Presentation

14. Public Health High-Level Process Model • Surveillance Planning • Identify the health-related problem to be addressed • Understand the setting in which surveillance and response activities will take place • Define the scope of surveillance • Develop policies and procedures for conducting surveillance • Case Monitoring • Identify parties meeting case definitions and record information about them • Report cases to responsible parties • Analyze data to identify problems and trends • Investigate and confirm suspected cases • Communicate results of analyses and investigations • Disease Intervention • Take action to prevent or control disease • Evaluate usefulness of surveillance and effectiveness of outbreak responseactivities PHCDM Governments Project Special Interest Group Presentation

15. PHCDMJun-Dec 2000 Objectives • Develop and implement a PHCDM change management process • Finalize the PHHPM process decomposition and its mapping to the PHCDM • Develop a procedure for transforming the PHCDM into project specific database implementations • Implement automation to support the mapping of project specific database implementations to the PHCDM • Complete harmonization of the PHCDM with the HL7 RIM • Adopt the HL7 vocabulary processes and begin to define PHCDM vocabularies PHCDM Governments Project Special Interest Group Presentation

16. NEDSS Cooperative Agreement Initiatives PHCDM Governments Project Special Interest Group Presentation

17. PHCDM and NEDSS • The PHCDM project is one of many interrelated activities supporting CDC’s National Electronic Disease Surveillance System (NEDSS) initiative. • The long-term vision for NEDSS is a collection of complementary computerized information systems that automate the process of gathering health data, facilitate the monitoring of the health of communities, assist in the analysis of trends and detection of emerging public health problems, and provide information for setting public health policy. • The focus of the NEDSS initiative is the development, testing, and implementation of information management technology standards that will support more complete and comprehensive integration of computerized health information systems for use in public health. PHCDM Governments Project Special Interest Group Presentation

18. NEDSS Systems Architecture • Brings structure, standards and interoperability to the information systems elements of surveillance • Allows the latitude for states and local health departments to do specific implementations and fulfill public health needs • Is respectful of local / state / federal data flow issues • Provides a structure around which CDC systems can be integrated • Facilitates the ready exchange of comparable data and reports between public health organizations without reprogramming PHCDM Governments Project Special Interest Group Presentation

19. Integrated State / Local Data Repository • Implement an integrated data repository • able to be patient centered, non-categorical • support “thick” client and web applications • (ODBC, JDBC and ANSI SQL) PHCDM Governments Project Special Interest Group Presentation

20. Integrated State / Local Data Repository Security Implement a security system and appropriate security policies (Internet-based, with a firewall and certificates or tokens) PHCDM Governments Project Special Interest Group Presentation

21. Integrated State / Local Data Repository Local Health Department Or Clinical Site State Health Department Security • Conduct and support web browser-based data entry and data management. • Internet presentable, but not necessary • Multi-tiered including an application server to run web “forms” from others PHCDM Governments Project Special Interest Group Presentation

22. Integrated State / Local Data Repository Clinical Database Local Health Department Or Clinical Site State Health Department Electronic Laboratory Messages Security HL7 Accept, route and process electronic HL7 messages containing laboratory and clinical content (LOINC, SNOMED). PHCDM Governments Project Special Interest Group Presentation

23. Integrated State / Local Data Repository Clinical Database Local Health Department Or Clinical Site State Health Department Electronic Laboratory Messages Security HL7 XML Data Exchange Develop active data translation and exchange (integration broker) functionality (XML, DTD’s HTTPS). CDC and Other Health Depts. PHCDM Governments Project Special Interest Group Presentation

24. Integrated State / Local Data Repository Clinical Database Local Health Department Or Clinical Site State Health Department Reporting, GIS and Analysis Electronic Laboratory Messages Security HL7 XML Data Exchange Develop data reporting and visualization capability (messaging and import/export ODBC, JDBC, ANSI SQL). CDC and Other Health Depts. PHCDM Governments Project Special Interest Group Presentation

25. Integrated State / Local Data Repository Clinical Database Local Health Department Or Clinical Site State Health Department Reporting, GIS and Analysis Electronic Laboratory Messages Security HL7 Shareable Directory of PH Personnel XML Data Exchange CDC and Other Health Depts. Implement a shareable directory of public health personnel (LDAP). PHCDM Governments Project Special Interest Group Presentation

26. Integrated State / Local Data Repository Transportable “Business” Logic Clinical Database Local Health Department Or Clinical Site State Health Department Reporting, GIS and Analysis Electronic Laboratory Messages Security HL7 Shareable Directory of PH Personnel XML Data Exchange CDC and Other Health Depts. Develop transportable business logic capability (COM, CORBA, EJB). PHCDM Governments Project Special Interest Group Presentation

27. NEDSS System Architecture Elements • Conduct and support web browser-based data entry and data management. • Accept, route and process electronic HL7 messages containing laboratory and clinical content. • Implement an integrated data repository. • Develop active data translation and exchange (integration broker) functionality. • Develop transportable business logic capability. • Develop data reporting and visualization capability. • Implement a shareable directory of public health personnel. • Implement a security system and appropriate security policies. PHCDM Governments Project Special Interest Group Presentation

28. NEDSS Cooperative Agreement Initiatives • Assessment and Planning – Assess current information systems personnel and technical infrastructure, evaluate that infrastructure against the NEDSS systems architecture and develop plans to migrate to the NEDSS architecture as needed. • Element Development – Implement between one and four of the NEDSS system architecture elements and use in the setting of identified public health activities. • Charter Sites - Conduct activities to implement and demonstrate the fully described systems architecture. Charter sites will receive funds for implementation of up to four system architecture elements and to ensure that new and existing elements work together as an integrated whole by prototyping the use of the full systems architecture to supply validated data for existing surveillance systems. PHCDM Governments Project Special Interest Group Presentation

29. Availability of Funds • Approximately $9,300,000 is available in FY 2000 to fund approximately 45 total awards • 35 NEDSS Planning and Assessment awards, $65,000 - 95,000 • 07 NEDSS Element Development Awards, $200,000 - $730,000 • 03 NEDSS Charter Awards, $600,000 - $1,200,000 • Supplemental awards will begin on or about September 30, 2000 • Applicants may request time-limited specialized technical consultation, software, and equipment as direct assistance, in lieu of a portion of financial assistance. PHCDM Governments Project Special Interest Group Presentation

30. NEDSS Development Coordination PHCDM Governments Project Special Interest Group Presentation

31. Shared Components and Standards Inter- Enterprise Shared Components and Standards Shared Components and Standards Shared Components and Standards Intra- Enterprise SDG SDG SDG SDG SDG SDG Project Specific SME SME SME SME SME SME Site 1 Site 2 Site 3 Development Coordination PHCDM Governments Project Special Interest Group Presentation

32. Development Coordination Example Shared Components and Standards Inter- Enterprise PHCDM, CIPHER, Vocabulary, Architecture, PHHPM Shared Components and Standards Intra- Enterprise Web based UI, HL7, IDR, XML, Business Logic, visualization, Directory, Security Core Demographic Database Electronic Lab-based Reporting NETSS Project Specific Demographic Data Subject Matter Experts Lab Subject Matter Experts Case Reporting Subject Matter Experts PHCDM Governments Project Special Interest Group Presentation

33. People (Roles) • Project Mangers • Project Sponsors • Project Liaisons • Technical Experts • Subject Matter Experts • Component Sharing Facilitators PHCDM Governments Project Special Interest Group Presentation

34. Process • Project plans, phases, tasks, sub-tasks, and activities • Policies and procedures for shared components and standards • Project / program monitoring and status reporting • Inter-project dependencies and coordination • Shared components development and maintenance • Shared component refinement and implementation PHCDM Governments Project Special Interest Group Presentation

35. Technology • Analysis, design, and construction tools • Meta-data repositories • Repository management software • Registries and directories • Project management tools • Desktop publishing tools PHCDM Governments Project Special Interest Group Presentation

36. Development Coordination PPT Technology Process People PHCDM Governments Project Special Interest Group Presentation

37. Transforming the PHCDM for the IDR • Define the implementation subset of the PHCDM • Expand complex, interval, and repeating attributes • Add / modify classes, attributes, and relationships • Document data integrity constraints • Identify class keys and inversion entries • Normalize the implementation subset • Define implementation tables and columns • Denormalize the implementation subset • Implement enforcement of data integrity constraints • Document departures from the published PHCDM Domain Project Teams IDR Project Team PHCDM Governments Project Special Interest Group Presentation

38. Allocating Responsibility • Define the implementation subset of the PHCDM • Expand complex, interval, and repeating attributes • Add / modify classes, attributes, and relationships • Document data integrity constraints • Define the implementation subset of the PHCDM • Expand complex, interval, and repeating attributes • Add / modify classes, attributes, and relationships • Document data integrity constraints Core Demographic Database Electronic Lab-based Reporting • Identify class keys and inversion entries • Normalize the implementation subset • Define implementation tables and columns • Denormalize the implementation subset • Implement enforcement of data integrity constraints • Document departures from the published PHCDM Integrated Data Repository PHCDM Governments Project Special Interest Group Presentation

39. PHCDM Governments Project Special Interest Group Presentation

40. eSG Participation in NEDSS • Ongoing PHCDM development and implementation • Application of PHCDM to NEDSS initiatives: • Accept, route and process electronic HL7 messages containing laboratory and clinical content • Implement an integrated data repository • Assistance with NEDSS development coordination: • Shared component/standard use facilitation • Program/project monitoring and status reporting • Inter-project dependencies and coordination PHCDM Governments Project Special Interest Group Presentation

41. Ongoing PHCDM Development and Implementation • Develop and implement a PHCDM change management process • Finalize the PHHPM process decomposition and its mapping to the PHCDM • Develop a procedure for transforming the PHCDM into project specific database implementations • Implement automation to support the mapping of project specific database implementations to the PHCDM • Complete harmonization of the PHCDM with the HL7 RIM • Adopt the HL7 vocabulary processes and begin to define PHCDM vocabularies PHCDM Governments Project Special Interest Group Presentation

42. Application of PHCDM to NEDSS Initiatives • Core Demographic Database Projects and Electronic Laboratory-based Reporting • Develop of a project-specific logical data models based upon the PHCDM • Coordination of vocabulary development • Development of HL7 XML message specifications • Implementation of integrated data repositories • Development of a physical data model based upon project specific logical data models PHCDM Governments Project Special Interest Group Presentation

43. Assistance with NEDSS Development Coordination • Shared component/standard use facilitation • PHCDM, PHHPM, HL7 Vocabularies • Education and mentoring • Program/project monitoring and status reporting • Project planning assistance for data related initiatives • Program level monitoring for data related initiatives • Inter-project dependencies and coordination • Assistance in identification of inter-project dependencies • Assistance in coordination of inter-project dependencies PHCDM Governments Project Special Interest Group Presentation

44. Identification of Next Steps PHCDM Governments Project Special Interest Group Presentation

45. Questions PHCDM Governments Project Special Interest Group Presentation