1. Leveraging public health’s experience with information standards and health improvement Claire Broome, M.D. Centers for Disease Control and Prevention (CDC) June 24, 2004 Connecting Communities for Better Health

2. What is the “business” of public health? Surveillance  Detect outbreaks—bioterrorist, foodborne, etc  Assess health status of population  Assist in health planning Investigation of causes and transmission pattern Development of effective interventions to prevent disease and promote health Real time interoperable network needed for data and communication exchange with myriad partners

3. Public Health Information Network (PHIN) Health Department Public Health Lab CDC and Other Federal Organizations Public Vaccination Center Ambulatory Care Hospital or Health Plan Investigation Team Law Enforcement and First Responders R X Pharmaceutical Stockpile Non-Clinical Sources OTC, 911, etc.

4. Early Event Detection BioSense Outbreak Management Outbreak Management System Surveillance NEDSS Secure Communications Epi-X Analysis & Interpretation BioIntelligence analytic technology Information Dissemination & KM CDC Website Health alerting PH Response Lab, vaccine administration, etc. Federal Health Architecture, NHII & Consolidated Health Informatics Public Health Information Network

5. Detection and monitoring – support of disease and threat surveillance, national health status indicators Analysis – facilitating real-time evaluation of live data feeds, turning data into information for people at all levels of public health and clinical care Information resources and knowledge management - reference information, distance learning, decision support Alerting and communications – transmission of emergency alerts, routine professional discussions, collaborative activities Response – management support of recommendations, prophylaxis, vaccination, etc. PHIN Coordinated Functions

6. How do we get to standards based interoperable systems? Gartner Group project on PHIN implementation – PHIN is a multi-organizational business and technical architecture  Technical standards  Data standards  Specifications to do work Is also a process  Commitment to the use of standards  Commitment to participating in development and implementation of specifications

7. PHIN Components  Services/Tools  Health Alert Network (HAN) – Internet connectivity, alerting and distance learning  PHIN Vocabulary Services – standard vocabulary versioning, and provisioning  CDC Web Redesign – public health information architecture--better access  PHIN Messaging System – secure bi- directional data transport (ebXML)

8. PHIN Components Applications  National Electronic Disease Surveillance System (NEDSS) web entry for disease surveillance automatic electronic reporting of laboratory results indicating a notifiable disease  BioSense – early event detection  Laboratory Response Network (LRN) – diagnostic capacity for threat agents

9. PHIN funding  September 2002: Public Health and Social Services Emergency Fund provides >$1 billion for state and local public health preparedness capacity  guidance from CDC and HRSA to use PHIN standards for IT investments  Guidance explicitly includes NEDSS as part of surveillance  September 2003 : second year Preparedness funding  HRSA grants $498 million ; CDC $870 million

10. Example of a potentially useful “tool”: PHIN Messaging System (PHIN-MS) Software for industry standards based inter- institutional message transport available from CDC  ebXML “handshake”, PKI encryption and security  Payload agnostic (HL-7, text file, etc)  Bi-directional data exchange PHIN-MS in use by state and local partners for point to point messaging (ED and lab to state; state to CDC) Several commercial systems planning to incorporate integration broker laboratory information system

11. How can public health accelerate interoperable standards based health information systems? Public health intrinsically must exchange information with all clinical partners in a population  Shouldn’t all LHII’s have a public health participant? Evident public value—outbreak detection, preparedness Concrete solutions for standards based interoperability – e.g.  bidirectional secure messages (ebXML)  HL7 V 3 messages  implementation guides Development of data use agreements

12. Background Information

13. What does PHIN have to do with HIPAA? HIPAA mandates national health care data standards and policies in four areas:  Transaction content; unique identifiers for providers, health plans; security; privacy PHIN architecture standards are HIPAA compliant:  supports “dual use” for security, messaging elements Approach to PHIN data standards is HIPAA compliant:  Adopting HIPAA standards where relevant  Advocating inclusion of data elements relevant to public health with SDO’s

14. What does PHIN have to do with HIPAA Privacy Rule? Privacy Rule allows current practice of sharing data with public health  Rule permits health care providers to share individually identifiable information with legally authorized public health entities for public health activities  Public health activities include surveillance (NEDSS), investigation, intervention

15. Early event detection is critical for Bioterrorism management and response The most useful tools will be dual use; Bioterrorism capable and regularly exercised for “routine” public health activities Multiple data sources should be co-ordinated to facilitate signal evaluation and reduce user burden Both diagnostic and pre-diagnostic (syndromic) data exist in electronic form in many yet untapped health- related data stores BioSense - Principles

16. What is Biosense? Near real-time data access Analysis capabilities at local, state and national levels Shareable outbreak detection algorithms and analytic capabilities National coverage

17. BioSense System I National and Regional Data Sources City / State Recipients National labs test requests & results Nurse Call Line Data Over-the-counter drug sales DoD and VA sentinel clinical data Lab Response Network (including BioWatch) Analysis and Visualization Clinical lab orders

18. BioSense System II (proposed) National and Regional Data Sources City / State Recipients National labs test requests & results Nurse Call Line Data Over-the-counter drug sales DoD and VA sentinel clinical data Lab Response Network (including BioWatch) State and Metropolitan Surveillance and Response Systems (others) Analysis and Alerts Electronic Investigation Regional clinical networks

19. Next Steps BioSense system infrastructure is in use at CDC System I released for state and city use April 2004 For public health users, AND as a platform for evaluation of early detection analytics Actively seeking additional:  Outbreak analytic approaches  Display approaches for multiple data sources  Interested groups-> jloonsk@cdc.gov

20. National Electronic Disease Surveillance System (NEDSS)-- PHIN surveillance component Browser-based data entry over Internet Person-centric Case investigation capabilities Electronic Laboratory Results HL 7 messages (2.x) can be received Security that meets HIPAA standards HL7 Version 3 case notification message from state to CDC

21. NEDSS Base System  NEDSS compatible system for state and local use developed by an experienced web software developer (Computer Sciences Corporation)  Also useful as a specific implementation of NEDSS e.g. standard messages, database model  Version 1 includes 93 notifiable diseases, and modules for vaccine preventable diseases, hepatitis, bacterial meningitis and pneumonia  Now at Version 1.1.3; includes expanded data entry capacity, reporting capacity, locally defined fields

22. NBS Deployment Planned - 19 NBS Collaborative Development - 1 NBS Deployment Underway - 8 NBS In Use – 4 Los Angeles Chicago Houston Washington D.C. Philadelphia New York City NEDSS – Compatible State/Jurisdiction Development - 26 NBS = NEDSS Base System (CDC-developed) 31 Total NBS Sites NEDSS Site Status as of 10/7/2015