Public Health Information Network: an update from CDC Claire Broome, M.D. March 17, 2004 Public Health Data Standards Consortium

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 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

What is PHIN? Gartner 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

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

Topics for presentation Biosense PHIN surveillance (NEDSS) Example of PHIN “tool” -- PHIN Messaging System

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

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

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

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

Next Steps BioSense system infrastructure is in use at CDC System I release for state and city use this month Should belong to the users and those interested in early detection analytic evaluation as a platform Actively seeking additional:  outbreak analytic approaches  Display approaches for multiple data sources  Interested groups->

PHIN surveillance component (NEDSS) Browser-based data entry over Internet Person-centric Case investigation capabilities ELR messages can be received Security that meets HIPAA standards

NEDSS funding 50 states, 6 cities, and 1 territory funded for NEDSS: 43 started with Assessment & Planning phase in September 2000  FY2003 NEDSS grants: 31 propose NEDSS Base System; 26 NEDSS compatible approach  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

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 1.0 includes 93 notifiable diseases, and modules for vaccine preventable diseases, hepatitis, bacterial meningitis and pneumonia  Now at Version 1.1.1; includes expanded data entry capacity, reporting capacity, locally defined fields  Added additional contractor, SAIC, to accelerate Program Area Module Development

NBS Deployment Planned - 19 NBS Collaborative Development - 1 NBS Deployment Underway - 10 NBS In Use – 2 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 6/3/2015

Public Health Information Network 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 Several commercial systems planning to incorporate Technical assistance available for public health partners

Second PHIN conference Atlanta, May 24-27, 2004 CDC policy that all IT investments with cooperative agreement funds use PHIN standards PHIN Alerting and Secure Communications PHIN Vocabulary Provisioning services Integration of outbreak management, response, and surveillance systems

Background Information

Conclusions from Gartner Group review of PHIN implementation  An independent review of the PHIN Version 1 has been completed  PH partners interviewed agree to the vision and overall direction of the PHIN  The PHIN standards and specifications are a strong start and are appropriate for use in PH, as annotated in this report

Gartner’s incremental steps towards PHIN compatibility...  application development teams should focus first on the data, data model and the use of CMVs (i.e., create data that can be easily aggregated at the national level using XML schema).  next focus on the messaging formats, transport & security standards to easily and securely share this data with its PH partners and CDC.  then, directory services that will allow authorized and controlled access  Tools that can be provided by CDC (e.g., compliant software modules, tools for messaging, etc. built on PHIN standards) should be made available to the states and their partners, for use as interested

Implementation, continued  PHIN should allow for multiple solutions for those components that are more technically challenging or immature in the market (e.g., HL7 v3.0, ebXML). However, the goal of a “live” network must be maintained.  Attach the PHIN standards to the cooperative agreements as was done with the Preparedness awards  Security is required at all levels of state PH infrastructure; independent verification & validation (IV&V) services assist the states with security compliance

Where available, early event detection data based on the diagnostic skills of clinical personnel should be emphasized and certainly integrated Data stores are aggregated locally, regionally, nationally, and in cross organizational databases that can be actively leveraged for public health purposes Real-time data acquisition and analysis technologies are still not broadly implemented Needs for analytic capabilities at the local, state, and national levels BioSense - Principles

Consequence management is a major issue As much as possible let public health users control alerting and notifications Systems should minimize reporting burden - manual reporting of data has limited roles  prospectively around major events  retrospectively after major occurrences Support comparative analysis and interpretation by public health professionals BioSense Principles

Data should be securely managed for public health use with jurisdictional access controls Be sensitive to patient confidentiality – reported data will not include patient names or medical record numbers – but strive for linkage Support public health investigation through supplemental electronic queries for information – bidirectional infrastructure; reporting and query Build on national standards and investments  Public Health Information Network (PHIN – required for BT cooperative agreement spending) (fully aligned with national and industry standards - CHI, NCVHS, Federal Health Architecture…) BioSense Principles

Early event detection needs to connect to the people and systems for public health response Systems and evaluation should consider the continuum for: 1. Initial detection 2. Subsequent case identification 3. Quantification of event magnitude to help shape public health response 4. Data exchange and integration with outbreak management and response systems BioSense Principles