Reportable Conditions Knowledge Management System (RCKMS)

1. Reportable Conditions Knowledge Management System (RCKMS) VMCOP Workgroup Sep 17, 2013

2. RCKMS Meeting Agenda • Overview • Architecture • Pilot – CDC R&D Lab • Information Requirements • Production implementation • Questions

3. Overview

4. History • PHSkb: A knowledgebase to support notifiable disease surveillance Timothy J Doyle, HaoboMa, Samuel L Groseclose and Richard S Hopkins, 2005 • Many other attempts to promote a knowledgebase • ELR Task Force Priority Recommendation - Advance Reportable Conditions Knowledgebase (RCKB) (collection of resources that contain what our partners need to electronically know what to report and when and how to report it)

5. Policy Driver for RCKMS – Stage 3 Draft recommendations -- Improve Population and Public Health RFC ONLY Changed threshold to 10% from 20% for consistency

6. Public Health Need • Reporting of conditions is confusing, disjointed, labor-intensive and largely manual • Each jurisdiction creates its own rules for reporting at different levels of specificity and are typically available in human-readable format only • Reporters have great difficulty finding, interpreting and implementing the correct rules. • Rules changes are not communicated timely or effectively to reporters • Automated detection and electronic reporting is very difficult to implement and maintain under current methods 6

7. RCKMSScope • Include information about the who, what, when, where, and how of reportable condition reporting. • For the purposes of this project, reportable conditions are those for which reports: • Are based on individual cases or individual laboratory tests/results • Are about human subjects (not animals, drugs or devices) • Contain personally identifiable information, including person names • Are governed by jurisdictional law (statute or rule/regulation) • Provide machine readable rules to allow systematic detection and reporting via ELR • Communicate rules changes to reporters as they occur 7

8. Reporting Specifications • Who, What, When, Where and How of Reporting • Who – is required to report (e.g., Hospital, Healthcare Provider, Lab) • What- information should be used to decide if a report needs to be made • When – should the report be sent (e.g., 2 hr, 24 hr, 10 days) • Where – should the report be sent (e.g., local HD, state HD, and where within the HD) • How – should the report be sent (e.g., ELR, phone, fax, mail) • What – link to specification for information that should be included in the report 8

9. Key Components of RCKMS In: authoring framework • Reporting Actions, Reporting Criteria and Links • Collaborative development environment with lifecycle management • Unambiguous representation of attribution and ownership Out: information access methods • View and query interface • Human-readable and machine-processable output files • Flexible • e.g., single or multiple jurisdictions, conditions, reporters • Push and pull modes Middle: knowledge representation

10. StakeholdersCurrent List • Content Viewer • Governance / Policy • Jurisdictional • Public • System Users • Knowledge Curators • Jurisdictional Administrators • Vocabularists • Public Health Reporters This list will be evolving. Any adjustments should be made within the Requirements Subgroup

11. Architecture

12. RCKMS Long term Scope Public Health State, Local, Territorial Agencies PH Reports RCKMS Authoring Framework PH Reporters Query/View Hospital Labs Database Who, What, When, Where, How Subscription Management Including Notifications LIMS Web Service EHR Other Web Services Ambulatory Care Structured Output Generator (3) Open CDS Local National, Clinical & Public Health Laboratories EHR LIMS DSS Web Service (2) Open CDS HeD HeD Compliant format - Triggering Criteria - Reporting Actions - Links (1) HeD Output file Options HeD file download OpenCDS in Cloud OpenCDS Locally Deployed

13. Context Use Case - Release 1

14. RCKMS Component View RCKMS Public Portal • Portal • Views / Query • Export (HR / MC) • Subscription/Notif • ProfiileMgmt • RCKMS Services • Store Access HTML SQL / XML • Subscriber • Viewer • Application <SQL> • Knowledge <XML> RCKMS Store • Web Services • Query • Export (HR / MC) WS Jurisdictional Ontology Condition- Reportable Event Ontology • Public Health Dept. • Laboratories • Hospitals • HIE Publish RCKMS Private Portal - Authoring Lab/Clinical LOINC Ontology • Portal • Authoring • Views / Query • Workflow • Administration • Application <SQL> • Knowledge <XML> • Reference <Ontology> RCKMS Store HTML PHIN VADS • Knowledge Manager • System Admin • Jurisdiction Admin. SQL / XML SRCA Jurisdictional Univ. of Utah • RCKMS Services • Knowledge Access • Criteria Validation • Workflow • Ontology Mgt. • Document ETL • Bulk Load Integrations TIGs • Lab • Clinical • Code Maps Position Statement Criteria Initial Loads

16. Pilot RCKMS Pilot - Development Environment

17. Information Requirements Criteria • Lab Detection • Epidemiologic • Clinical • Diagnostic • Signs & Symptoms • Demographic • Jurisdiction Timeframe Reporting Actions References and Links

18. Example Criteria Preliminary results 18

19. Variation in Reporting Time Frames

20. Variation in Elevated Blood Lead Level Criteria

21. Reporting Actions & Links Reporting Actions References and Links

22. Production Implementation • Components to be included • Partner engagement • Governance • RCKMS governance • Content governance Still to come • External interfaces – PHIN VADS, other terminology providers • Integration with Ontology • Web Services

23. Production Implementation (features) • Authoring Framework • Workflow • Subscription & Notification • Ontology as determined to be necessary • Automated generation of output file(s) • Expanded View & Query capability • Profile Management • Administration

24. Ontology & Vocabulary

25. NNDSS http://wwwn.cdc.gov/nndss/document/NNDSS_event_code_list_2013_Revised.pdf 19 events deleted 56 events added 54 case definition changed 7 category created 10 retired codes 12 replaced codes 98 nationally notifiable conditions

26. National and state requirements for 3 conditions in 3 states www.doh.wa.gov/notify www.cdphe.state.co.ys/dc/index.html www.health.utah.gov/epi

27. Added 2008 Added 2008 Added 2008 11091 Ehrlichiosis/Anaplasmosis, undetermined * 11089 Ehrlichiaewingii* 11088 Ehrlichiachaffeensis* Replaced by Replaced by retired2008 Retired 2008 11086 Ehrlichiosis, human monocytic (HME) 11087 Ehrlichiosis, human, other or unspecified agent Added 2001 Added 1998 Major taxonomic revision 1999 Scope of original term splits Anaplasmosis is a new disorder Added 2008 Retired 2008 Replaced by 11085 Ehrlichiosis, human granulocytic (HGE) 11091 Anaplasmaphagocytophilum* Added 1998 Ehrlichiaphagocytophila

28. Utah Utah Utah Utah Utah Utah In Washington, Ehrlichiosis is a rare condition, with no granularity. It is mentioned on a separate page and unknown for 2007 Colorado does not report ehrlichiosis.

29. Analysis of national data How does an analyst make a report of a national condition spanning time (e.g. 10 years) where the scope of the condition and the name of the condition changes, forks and merges?

30. Questions