Evolution of Integrated Surveillance in the United States

Scott J.N. McNabb, Ph.D., M.S.Ruth Ann Jajosky, D.M.D., M.P.H.

Robert FaganScott Danos, M.P.H.

Division of Integrated Surveillance Systems and ServicesNational Center for Public Health Informatics

Coordinating Center for Health Information and ServiceCenters for Disease Control and Prevention

Program BriefingApril 29, 2008

The findings and conclusions in this presentation are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention.

McNabb, S.J.N., D. Koo, R.W. Pinner, and J.D. Seligman. Informatics and Public Health at CDC. MMWR. Dec. 22, 2006. 55(Sup02);25 – 8.

33

Fundamental Theorem of Medical Informatics (Charles Friedman)

• Informatics is as much about people as it is technology

• In practice, people and technology are in an interactive partnership

Perspectives & Points-of-View

What is case reporting?Actions taken by providers* to recognizeand report a condition of public healthsignificance** to a local, county, or statepublic health agency

* physicians, infection-control, laboratories** required by law or not

What is case notification?• Actions taken by a U.S. State or Territorial

Health Department to recognize a case of public health significance at the federal level and notify the federal public health system (e.g., through the National Notifiable Diseases Surveillance System [NNDSS])

• Actions taken by a local, state, and national agency to recognize a public health emergency of international concern (PHEIC) and notify the World Health Organization

Case Report

Case Notification

Reusable data elements can be mapped

Jajosky RA and Groseclose SL. Evaluation of reporting timeliness of public health surveillance systems for infectious diseases, BMC Public Health. 2004 Jul 26;4:29.

Subject Information

Clinical Information

Clinical Information

Reporter/Health Care Provider Information

Clinical Information

Clinical Information

Subject Information

Diagnostic InformationReporter/Health Care Provider Information

Epidemiologic Information

Epidemiologic Information

What does Integrated BioSurveillance Mean?In the process sense of the word, the term

integrating BioSurveillancemeans achieving N – 1 systems through

which CDC is notified of outcomes ofnational public health significance.

Integrating BioSurveillance(by interoperating the silos)

A B C D E

reporting

What does Integrated BioSurveillance Mean?In the process sense of the word, integratingBioSurveillance means working to achieveefficient and effective public health workpractices that are supported by interoperableinformation systems to detect, register, confirm,report, and analyze health outcome data whilevisualizing and reporting out messages thatguide [and are guided by] acute and plannedresponses.

What does Integrated BioSurveillance Mean?

In the end-state sense of the word, integrated BioSurveillance means a

person-based, longitudinalregistry of public health data built from case

reports vis-à-vis an event-based one.

What does Integrated BioSurveillance Mean?In the end-state sense of the word, integrated biosurveillance means oneset of standards for "bringing together" or interoperating existing or newdata streams; one sign-on, data-entry once, and one system that allowsindividual access from any computer; one source and set of individualizedpublic health tools for customized data views, command sets, and publichealth management; one set of guidelines for establishing and managingdatabases; one-stop shopping for information in public health informaticsand one source about integration of public health information for all users;one grid with one access to all information, but all information is not storedin one place; one medicine (i.e., health without regard to speciesdifferences); yet one size does NOT fit all.

National Notifiable Diseases Surveillance System

(NNDSS) Ruth Ann Jajosky, D.M.D., M.P.H.

18

What is the NNDSS? (1)• State-based public health surveillance system

• Based upon a list of Nationally Notifiable Infectious Diseases (NNID)

• There are approximately 77 NNID• Unifying principle: regular, frequent, and timely information is

necessary for prevention and control of NNID• Council of State and Territorial Epidemiologists

(CSTE) • Collaborates with CDC in the administration of the NNDSS• Represents collective voice of epidemiologists in the States and

Territories on issues involving public health practice• Through CSTE position statement process, they document

policy decisions• Annually approve changes to NNID list and national

surveillance case definitions

19

What is the NNDSS? (2)• 57 reporting jurisdictions report data to CDC each

week• All U.S. states, NYC, Washington DC, 5 U.S. territories• No personal identifiers sent

• States report data voluntarily to CDC• The list of NNID can change each year• Disease reporting is mandated only at the local or

state level• The list of reportable diseases is different in each state

• U.S. Constitution gives the State Health Officer the authority for public health

• CDC assumed responsibility for collection and reporting of NNID in 1961

20

NNDSS Background• At the federal level, the data are used to:

• Monitoring trends • Monitoring the effectiveness of prevention and control activities • Program planning and evaluation • Policy development • Research

• At the state level, the data are also used as indicated above but also to implement immediate public health action (disease prevention and control activities)

• Some NNID are reported to the World Health Organization (WHO)• Public Health Emergencies of International Concern (PHEIC),

under the revised International Health Regulations

21

Major NNDSS Products• MMWR Tables I and II• MMWR Table IV (HIV/AIDS, TB data)• MMWR Figure I • MMWR Summary of Notifiable Diseases, U.S.• NNDSS Link (AVR tool)• Annual reporting requirements assessment • Policies and procedures

• Data-stewardship agreements, standardized case definitions, residency rules, publication criteria, etc.

• NNDSS case definitions web site

22

23

NNDSS Data• Summary data in National Electronic Telecommunications

System for Surveillance (NETSS) format (beginning 1951) • Case-specific data in NETSS format (1992 to 2008) • Two data conversion processes

• National Electronic Disease Surveillance System (NEDSS)- to-NETSS conversion

• NEDSS-base system (NBS) data from 16 states (core and disease-specific data)

• Supports current publication and analytical needs• NETSS-to-NEDSS conversion

• Supports analyses of data in Data Marts• Complex transition converting systems and data• Quality control and quality assurance• Resource intensive• Steep learning curve for data analysts

24

Terms• NNDSS

• State-based public health surveillance system• National Center for Public Health Informatics compiles the data

which becomes the official U.S. statistics for this system

• NETSS• Legacy message format for data reported to CDC for selected

NNDSS conditions• CDC-developed surveillance information system

• NEDSS • New message format for data reported to CDC for the NNDSS and

other systems• CDC-developed a surveillance information system (NBS)• There are other dimensions (NEDSS discussion later in

presentation)

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What’s the difference between NNDSS, NETSS,

NEDSS, and NNDSS Link?

26

NNDSS technology neutral

NETSSHARS

TIMSSTD*MIS

Weekly Tables

Annual Summary

Data Release

NBS ArboNETSARS

Influenza-associated pediatric mortality

PoliciesProcedures

Data

Information Systems

Products

NNDSS Link

NEDSS compatible systems

27

Overlap among the NNDSS, NETSS, NEDSS, and the Surveillance World

NEDSS:Supports Reporting andNotification ofSelected NNIDplusElevated Blood Lead Levels,PHLIS, and FoodNet

NNDSS: 77 Nationally Notifiable Infectious Diseases (NNID; e.g., West Nile Virus)

NETSS:SupportsReporting andNotification ofSelected NNID

SurveillanceWorld (e.g., BRFSS)

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Collaborative Work with CSTE• 2007 CSTE-CDC State Reportable Conditions

Assessment (SRCA)• Major change in methodology to solicit and

document reporting requirements• All reporting requirements (ID and non-ID) in all

NNDSS reporting jurisdictions• Transitional step toward working with OntoReason to

gather reporting requirements in a Knowledgebase (Kb) at the local level

• Objective of Kb: Provide a central up-to-date listing of reportable conditions by jurisdiction to facilitate more complete case-reporting to Public Health and to reduce the burden on Public Health stakeholders to gather this information on their own

29

Additional Work with CSTE• 2008 SRCA• Development of algorithms to trigger

case reporting from the healthcare sector to local, county, and state public health

• Transform human-readable national surveillance case definitions to machine-readable format

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Collaborative Work with CDC Programs on Data Marts

• Development of NCIRD Data Mart• Includes but is not limited to bacterial meningitis and invasive

respiratory disease pathogens• Vaccine-preventable diseases (VPDs)

• Development of NNDSS Data Mart• Develop a plan to transition data storage and analysis to NEDSS

formats for processing of all NNDSS data• Must address existing independent Data Marts containing

NNDSS data• Automated logical error-checking with feedback and

summary reports to data providers• Current and historical data

The History ofNETSS-to-NEDSS

Robert Fagan

33

In the Beginning• Before 1985: no direct electronic transmission of

public health surveillance data• States did send aggregated counts of 49 National

Notifiable Diseases (NNID) to CDC via paper and phone (versus the 77 NNID in 2008)• Data elements: state, MMWR week/year, disease, total count• Slow and difficult to update• The Territory of American Samoa still sends aggregated data by

phone or fax• Disease counts sent to CDC based on state-

determined definitions, not nationally standardized case definitions

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1985: Beginning of the Electronic Era• Extrapolating data from paper reports

difficult• Strong need for detailed case reports

• Six States with ample resources and staff volunteered for Electronic Surveillance Project (ESP)

35

1985 – 1990: ESP• Electronic Surveillance Project (ESP) was a national 5-

year pilot project for electronic notifiable diseases• Each state developed their own version of an electronic

health reporting system• Each state included different coding structures, protocols, and

diseases• Only commonality was the 40-byte message standard• CDC developed data-interchange standard to translate received

messages

• A positive CDC assessment of the pilot supported the development of National Electronic Telecommunications System for Surveillance (NETSS)

36

1990: NETSS• Developed coding to better reconcile national

and state records• Initially intended to expand to all CDC programs• Satisfied states with intuitive, easy-to-use, easy

to understand, stable system which needed limited resources…however,

• Limited resources restricted the scope of NETSS to event-based PHS• No contact tracing• No case management • Case reporting was event-based, not patient-based

37

1993 – 1995: EPSVPD• Expanded Program for Surveillance of Vaccine

Preventable Diseases: version of NETSS tailored to VPD program

• Deployed in two years• Employed by 100% of states• No funding provided to states by CDC• Dedicated, salaried CDC FTE helped states to

implement NETSS

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1994: CDC Program Participation• STD program initiated move to NETSS • Meningitis, Lyme disease, Hepatitis, and VPD programs

extracted data from and integrated into NETSS by 1994• Double reporting

• TB• Immunizations

• HIV did not participate• Fear of confidentiality issues• Reluctant to share resources

• NETSS matured as far as possible by 1994

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Enhancing NETSS• 1995: EPO proposed updating NETSS from DOS-based system

• States already moving operating systems to Windows • Push for move to Windows-based system at CDC

• Further NETSS updates denied in anticipation of migration to a newer system

• Existing candidate systems in use by states were reviewed for possible adoption

• CSTE requested an updated, application-independent, data interchange system

• Health Information Surveillance and Systems Board (HISSB): CDC-wide surveillance committee formed in response to the Katz Report

40

1998: Integration Project Goals

• New NETSS data elements were requested by CDC programs

• Define a common user interface, core data dictionary, and architecture for data model

• Standardize electronic security protocols

41

1998: Integration Project• 11 systems involved: NETSS, STD*MIS, HARS,

SHAS, ASD, PSD, TIMS, PHLIS, UD, ABC, FoodNet• Dr. Claire Broome worked to establish the title and

funds• 1999 – Letter from J. Koplan, CDC Director: “I am

requesting that any other surveillance systems development effort be postponed or suspended until you obtain a waiver from HISSB”

• 1999: NEDSS Operating Working group (NOW) formed to create National Electronic Disease Surveillance System (NEDSS)

42

NETSS vis-à-vis NEDSS• NETSS

• OMB-approved forms• NEDSS

• 10-years elapsed between last update to NETSS and inception of NEDSS, during which major changes in disease epidemiology occurred and new laboratory tests developed

• JAD sessions held with federal and state and local public health staff to identify data elements to integrate into NEDSS

• OMB-approved forms• Paper-based, supplemental reporting enhancements to

NETSS• Surveillance program worksheets

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1999 – Present: NEDSS“The National Electronic Disease Surveillance System (NEDSS) is an initiative that promotes the use of data and information system standards to advance the development of efficient, integrated, and interoperable surveillance systems at federal, state and local levels.  It is a major component of the Public Health Information Network (PHIN)”

http://www.cdc.gov/nedss/

44

Public Health Information Network (PHIN)• Engaged in improving public health by

developing and disseminating best practices in research and processes to achieve meaningful and interoperable public health information systems

• PHIN was an outgrowth of NEDSS to embrace broader public health surveillance and IT needs borne from shortcomings during 9/11 and anthrax events

45

ESP & NETSS: Lessons Learned (1)• Use an industry standard approach for message creation, not a

proprietary software• Create Data Interchange/Message as first step• Broadly distribute the message format; this allows the project to

leverage state resources to build solutions• Develop the CDC side of the system right away after distribution

of message format to allow CDC to accept data• Develop recommendation for core record part of the application

and publish it• Offer the CDC developed software v1.0 free; use only core

information allowing rapid deployment

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• Work with CDC programs to co-develop disease specific program modules

• Divide CDC programs into groups by deployment versions as resources allow

• Emphasize Analysis Visualization and Reports (AVR); never release without strong analysis access to data

• Start from the very beginning working with user representative partnerships committed to using the developed application

• Solutions must accommodate the differences among states as the reporting protocols vary from state to state; public health is a state mandate not federal

• Hire dedicated, salaried CDC employee to help states implement NETSS ESPVPD

ESP & NETSS: Lessons Learned (2)

Where do we find ourselves now?Where do we find ourselves now?

NEDSS: Yesterday, Today, and Tomorrow

Scott Danos, M.P.H.

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Hospital orHealthcare

System

ClinicalLabs

Patient Registry

Healthcare Providers

Confidential Morbidity Report

STD Data

Hepatitis Data

TB Data

State or Local Health Department

Case Reporting

Case Notification

WHOWHO

Event Notification ELR

Notifiable Diseases Data Flow

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NEDSS Characteristics• Patient-centric• Involves highly complex, relational data to

support dynamic relationship• NBS: complex physical database

• Requires large effort to sustain• Challenges in supporting multiple data formats both

standards-based and non-standards-based• Inevitable difficulty in translating data from paper to

electronic format

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Issues at CDC in NEDSS Implementation (1)

• Many CDC silo systems were built or allowed to continue or develop

• No mandate to promote the use of a single application• Initial target date for full national implementation was 2000, with

deployment in 1998• Not realized

• HISSB authorized to distribute $321,000/year to various CDC programs through NEDSS

• Standards needed to launch project• Funds were a drop-in-the-bucket

• Contributions by technical SMEs were considered but not embraced in lieu of exploring a possible explosive growth in Internet capability

• Insufficient public health end-user input about what could and should be built

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Issues at CDC in NEDSS Implementation (2)

• Data model decisions• Conceptual Data Model, derived from the HL7 v2 RIM, was used to

develop the physical data model (too literal)• Absence of end-user review and input• Continued challenges in data extraction by SMEs

• Software decisions• SilverStream selected for the application server• Failure to identify and incorporate appropriate COTS products

• De-duplication• AVR

• Standards decisions• HL7 v3

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First Epidemiology and Laboratory Capacity Request for Proposal (ELC RFP) – July 20, 2001

• Element Development• Implement an integrated data repository• Accept, route and process electronic HL7 messages containing

laboratory and clinical content• Conduct and support web browser-based data entry and data

management• Develop active data translation and exchange (integration broker)

functionality• Modern application programming practices - component based,

object oriented and cross platform where possible• Formerly - Develop transportable business logic capability

• Develop data analysis, visualization and reporting capability• Implement a directory of public health personnel• Implement a security system and appropriate security policies

• Charter Site• NEDSS Base System (NBS)

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NEDSS-Base System (NBS) and NEDSS Status Today

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NBS Fact Sheet (1)• Vision

• NBS is a platform which many public health surveillance systems, processes, and data can be integrated in a secure environment

• Implementation standards are provided for states developing their own NEDSS compatible systems

• What is it?• Platform to support state notifiable disease surveillance and

analysis activities• Successor of NETSS• A modular system (all or part of the Base System may be

used)• NBS is not…

• NEDSS• Complete NEDSS solution• The integrated disease surveillance system for all states

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NBS Fact Sheet (2)• Facilitates public health surveillance at the local,

state and federal levels• In production by 16 states• 900 + users nationwide• Covers roughly 20% of the US population• Web enabled, built using J2EE (Java 2 Enterprise

Edition) standards• Product continues to evolve through

maintenance releases and incremental functionality

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NBS Fact Sheet (3)• Entities

• Patient• Provider• Organization

• Acts• Lab Report• Morbidity Report• Investigations

• Generic, Hepatitis, Pertussis, Measles, CRS, BMIRD, Foodborne• Treatment• Vaccination

• Messaging• NND Notifications• Electronic Lab Reports (ELR)

• De-Duplication• Reporting module• Geocoding framework• Administration

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Comparing NEDSS and silo systems at a state

NEDSS STD-MIS

15 servers 1 desktop

Testing

Production

Fail-over

State Security Firewall

Web ServerAuthentication

Service

b

XML Processors

LDAPServer

ODBC/JDBC

AVR(SAS)

JBOSS Application Server

Router/Translator

PublicHealthPartner

L3 EncryptionL2 EncryptionRouting L1 Encryption

NBS Server

Encryption

1a

1b

1c

1e2

1

5

4

6

7

8

NBS Security Firewall

State Web Server

OSOS

Authentication ServiceState Web Server Platform

NBSSystem

Files

NBS PresentationTransportable Business Logic

NBS Persistance Layer

1f

NBS Security

Files

State DBMSServer

1d

3

NBS System Architecture

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Simplified NBS Architecture

text

ODS RDB SRT

Data

Persistence

Secu

rity

ELR

Patient Locator

ETLData Migration

Core NBSDeduplication

Core Business

Presentation

StrutsCocoon

DAOsEJB 1.1 using BMP

Presentation Layer Definition: Controls the display of content, navigation within the application and allows for the separation of front-end and back-end functionality.

Core Business Layer Definition: Composed of programmatic objects encapsulating the core business functionality of the system. This layer communicates with the Presentation Layer in obtaining user input and presenting system information that is passed on to the layers below.

Persistence Layer Definition: This layer deals with technologies to persist (store) data into a database or any other repository as well as retrieve data from these repositories. This layer communicates with the business layer above and with the data layer below for relaying system data.

Data Layer Definition: This layer encompasses the physical repositories of data (e.g., Oracle Database, SQL Server, LDAP servers, etc.) and the programmatic tools to manipulate this data.

Security Layer Definition: Spanning across all other layers, this layer deals with securing system resources from unauthorized users or software programs by enforcing authentication and authorization rules based on business rules for the system.

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NBS Technical Overview• Based on Java/J2EE technologies

• Component based architecture represented by:• Cocoon/Struts framework for the front-end• EJB framework at the persistence layer• LDAP based security model with container controlled

transactions.• Application Server

• Initially deployed on SilverStream Application server• Migrated to Weblogic • Now to JBoss Application server.

• NBS extensively uses Industry standard components like XML within its framework

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Version Date Summary1.0 10/01/2002 First production-ready version of NBS Release 1.01.1 06/01/2003 Enhancing manual lab, electronic lab, and morbidity reporting, adding data

de-duplication, point-in-time demographics, treatment management, and other miscellaneous ERs.

1.1.1 10/01/2003 Adding reporting, external data warehouse, and the ability to extend data collection through ‘locally defined fields’

1.1.2 01/01/2004 Adding a repository for collecting data from state-defined and collaboratively defined fields, and sending the NND message

1.1.3 04/01/2004 Remaining NETSS functionality, the ability to create custom forms, usabilityenhancements, enhancements to the BMIRD PAM, and the integration of theFoodborne PAM

1.1.3 SP1 08/01/2004 Enhancing base functionality1.1.3 SP2 02/01/2005 Implementing end user ERs, implementing Lyme questions1.1.4 07/01/2005 Standard Operating Environment (SOE) upgrade, upgrade of Foodborne PAM,

ERs1.1.4 SP1 01/01/2006 Enhancing NBS Program Area Modules (PAMS), addition of new data mart1.1.5 09/15/2006 Migration to JBoss Application Server, new data marts, ERs1.1.5 SP1 12/15/2006 Enhancing reporting module, application performance, ERs1.1.5 SP2 04/24/2007 Implementing new ERs1.1.6 09/28/2007 Enhancing reporting module, application performance, new ERs1.1.7 12/31/2007 2008 form changes, application performance improvements, new ERs

NBS Release History

NBS Production Sites – 16

Los Angeles

Chicago

Houston

Washington D.C.

Philadelphia

New York City

Other NEDSS Sites – 27

Total State/local NEDSS sites = 57

NEDSS Deployment Status

Rhode Island

STC Test or Production Sites – 9

Atlas Test or Production Sites – 2

Consilience Test or Production Sites – 3

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NEDSS Status in US  Nov ‘04 Nov '05 Nov '06 Nov '07

Integrated Data Repository 17 23 36 44

Electronic Lab Result (ELR) Messaging 15 19 35 41

Web-browser Based Software 21 28 37 44

Standards-based Electronic Messaging 10 13 16 16

NEDSS-compliance (criteria 1, 2, & 3) 15 19 30 38

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NEDSS Status in the United States:proposed new criteria

  Nov '09 Nov ‘10 Nov ‘11

Integrated or Interoperable Data Repositories containing all NETSS diseases and conditions

Standards-based (ELR) imported from the state public health lab, national reference labs, and all sources > 5% of state lab

reports

Standards-based case reports can be imported and exported from State NEDSS systems (new)

HL7 2.5 standards-based electronic messaging to CDC for all NETSS diseases and conditions

NEDSS-compliance = all new criteria are met

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NEDSS Message Mapping Guides and CDC Program Datamarts

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Messaging

Verify Message Content

(e.g. VADS)

Publish PHIN Guides using HITSP tech standards

Promote awareness & adoption among stake

holders on PHIN Guides Support Business &

Technical challenges required by states

Design Implement technical capacity to

receive NND Messages at CDC

Design & Implement CDC Data marts that meets stakeholder’s

needs

Establish process to manage guide

changes

Gather Message guides content

from SMEs

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Key Steps to Developing the Message Mapping Guide

• Gather message mapping guide data elements from Programand submit to the DISS-Vocabulary and Messaging Team

• Initial draft is created by DISS-Vocabulary and Messaging and reviewed by DISSS

• After DISSS review the draft guide is passed to the Program for review

• Engage with program as needed during the review process to address questions and concerns

• Obtain approval from program to post guide to SiteScape• Notify DISS-Vocabulary and Messaging Team of the

Program’s approval to post to SiteScape• Broadcast SiteScape posting to CDC programs and external

partners

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Key Steps to Preparing and Publishing the Message Mapping Guide

• Engage external partners as needed during the 30-day SiteScape review process to address questions and concerns

• Triage external partner responses to appropriate teams• Vocabulary and Messaging will meet with the Program, DMB

and CDS to determine impact of requested changes• Receive Program final approval of the message mapping guide• DISS-Vocabulary and Messaging will make Program approved

changes • DISS-Vocabulary and Messaging submit message mapping

guide to DAMC for PHIN web site clearance• The message mapping guide is posted to the PHIN web site for

external partners

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Key Steps to Promoting Awareness and Providing Technical Support

• Establish a CDC technical support team with the following skills:

• HL7• Orion Rhapsody and Symphonia• SQL database• JMS• PHIN-MS and other messaging technologies• Public health message mapping guides

• Publish NEDSS message mapping guides on the PHIN website• Identify and engage state system developers or vendor

developers, alerting them to the availability of these guides• Provide a triage system that can manage technical assistance

requests from the states• Prepare documentation that addresses most support issues• Establish a test and staging environment, in collaboration with

the DMB team, to evaluate and certify NEDSS messages

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Key Steps Required for CDC to Receive NEDSS Message Mapping Guide Data

Production Environment• Set up PHIN-MS service action pair• Set up a PHIN-MS production receiver• Set up DMB production environment• Establish connectivity between DMB and PHIN-MS• Deploy DMB code in production• Implement reporting and production support procedures for

providing feedback to states• Ready to accept production messages from states

72

Key Steps to Develop and Support NEDSS Data Marts

• Gather user requirements• Design Data Mart• Perform NETSS-to-NEDSS conversion, including disease-

specific data• Test conversion, perform quality control checks, load NETSS value sets

• Prepare documentation • Data dictionary, document path and translations of data elements for

QA/QC processes• Train data analysts in access and use of relational data• Convert existing SAS analysis programs from NETSS to NEDSS• Review Data Documentation, Data Mart, and SAS programs with

Users• Perform User acceptance testing• Establish Change Control process• Establish error-checking with feedback to CDC program and

data providers

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Status of Message Specifications

Program/Condition POCCDCProgram Review

CDCProgram Approval

Site Scape Posting

External Review Complete

PHIN Web Site Posting

Animal Rabies Jesse Blanton Aug 07  Feb 08 03/03/08

Arboviral (West Nile, etc.) Jennifer Lehman  Dec 07 Mar 08  04/14/08

Foodborne Kathryn Teates Feb 07 Aug 07 12/18/07

Generic Ruth Jajosky Nov 07 Jan 07  02/21/08

Hepatitis Kathleen Gallagher Feb 07 Jul 07 09/10/0701/22/08

Lead Wendy Blumenthal Dec 06 Jul 07 06/08/07 08/24/07

Lyme Paul Mead Aug 07    

Malaria Sonja Mali Oct 07    

NCIRD\Bacterial Meningitis Tammy Skoff      

NCIRD\VPD Sandy Roush Aug 07 Dec 07 12/18/07

STD Sam Groseclose Sep 07/Mar08  

Tuberculosis Sandy Price Dec 06 Jul 07 06/08/07 08/24/07

Varicella Adriana Lopez Dec 06 Jul 07 06/08/07 08/24/07

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Message SpecificationsProgram/Condition NETSS NEDSSAnimal Rabies No YesDomestic Arboviral (e.g. WNV) No Under DevelopmentHepatitis Yes Yes (Published)Foodborne No YesLead No Yes (published)Lyme Yes PlannedMalaria No PlannedNCIRD/BMIRD bacterial pathogens No Under DevelopmentNCIRD/VPDs Yes Under DevelopmentSTD Yes Under DevelopmentTuberculosis Yes Yes (published)Varicella No Yes (published)Generic Yes Under Development

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Data Marts Data Marts

Requirements Designed Developed Tested SME SME

Program/Condition POC Review Acceptance

Animal Rabies Jesse Blanton

Arboviral Jennifer Lehman

Foodborne Kathryn Teates

Hepatitis Kathleen Gallagher

Lead Wendy Blumenthal

Lyme Paul Mead

Malaria Sonja Mali

NCIRD Sandy Roush Ongoing

NNDSS Ruth Jajosky

STD Sam Grossclose

Tuberculosis Sandy Price

Varicella Adriana Lopez Ongoing

76

NEDSS Major Stakeholders

77

HHS, AHIC, OMB, GAO, U.S. Congress• National vision of integrated (interoperable) PHS systems

o Ownership Status: CDC, in collaboration with national stakeholders

• Standards for meeting NHIN/AHIC requirementso Biosurveillance MDS Status: Widely known by the national communityo Case Reports to PH Status: CSTE and CDC working on thiso Notification Reports to CDC Status: Initial message mapping now posted to PHIN web siteo Treatment messages Status: Little work done, to date, for surveillance system support

• Enhance biosurveillance data flow to U.S. agencieso National biosurveillance Status: NEDSS data indirectly support this initiativeo IHRs Status: NEDSS data are part of the reporting systemo PAPHA Status: NEDSS is part of this systemo HSPD-21 Status: NNDSS is being considered to be focused and enhanced

• Required government reportso CPIC/OMB 300 Status: The NEDSS project is currently scoring 5 (out of 5)o EVM Status: This process is underway but moving slowlyo 508 Compliance Status: A current report to HHS was provided in 2007o OMB PRA Status: Approval obtained, renewal package submitted to OMBo Audits, CJs, questions Status: NEDSS continues to fare satisfactorily

78

CDC National Programs• CDC vision of integrated (interoperable) PHS systems

o Integrated Surveillance Status: Definition still evolving within the CDC community o Who leads this effort at CDC Status: Tacit recognition of NCPHI role but inadequate collaboration

• Access to data submitted in NEDSS formato Data access and analysis Status: Multi-year efforts beginning to show results

• Standards and Informatics tools for CDC systemso PHIN-VADS Status: Not widely known or embraced by the CDC communityo PHIN-MS Status: Limited adoption by the CDC communityo Notification Reports to CDC Status: Limited awareness or adoption by the CDC communityo MSS Status: Some interest by CDC community but limited adoptiono PHIN-Dir Status: Limited awareness or adoption by the CDC communityo Ontology tools Status: Near total unawareness by CDC community

• Funding to support systems integration project effortso System Development Status: No support available

79

NEDSS States (non-NBS adopters)• National vision of integrated (interoperable) PHS systems

o PHIN vision Status: Still evolving

o Open source, SOA, Grid Status: Confusing to most stakeholders

• Standards for meeting PHIN requirementso ELR Status: Tech specs nearing completion; major challenges in tech supporto Case Notification to CDC Status: Initial specs (v1) completed, much remains; probable challenges in tech supporto Case Reports to PH Status: Prototype specs (v1) completed, much remains; probable challenges in tech support

• Funding (ELC, BT, other) assistanceo ELC Status: Level fundingo BT Coop Ag Status: Risk of diminished fundingo State IT support Status: Frequently experiencing reductions and control by PH project managers

• Informatics tools and serviceso MSS Status: Adoption increasing; challenges in tech supporto PHIN-MS Status: Adoption widespread; challenges in tech support o PHIN-VADS Status: Adoption limited; challenges in tech supporto PHIN-Dir Status: Adoption limited; challenges in tech supporto Ontology tools Status: Pilot project, much remains to be done; challenges in tech support

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NEDSS States (NBS adopters)• NBS evolves to better meet stakeholder needs

o Continued Development Status: Contracts in place but scope will be limited

o NBS Performance Status: Currently meeting stakeholder needs

• NBS supports PHIN requirementso NBS Is PHIN-CompliantStatus: Work underway to meet these requirements

• Funding (ELC, BT, other) assistanceo ELC Status: Level fundingo BT Coop Ag Status: Risk of diminished fundingo State IT support Status: Frequently experiencing reductions and control by PH project managers

• Informatics tools and serviceso MSS Status: Supplied in NBS and MSSo PHIN-MS Status: Supplied in NBS and MSS o PHIN-VADS Status: Supplied in NBS and MSSo PHIN-Dir Status: Adoption limited; challenges in tech supporto Ontology tools Status: Pilot project, much remains to be done; challenges in tech support

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DISSS, NCPHI, CCHIS, CDC• CDC vision of integrated (interoperable) PHS systems

o PHIN Vision Status: Improved, functional versiono Open source, SOA, Grid Status: Conceptually clear but inadequately described operationally

• Tight integration with other PHIN systemso OMS, BioSense, etc. Status: This is the vision but challenges remain

• Complete transition from NETSS to NEDSSo Retire NETSS Status: To be provided

• Access to data submitted in NEDSS formato Data access and analysis Status: Multi-year efforts beginning to show results

• Informatics tools and serviceso MSS Status: Project well establishedo PHIN-MS Status: A successful example of CDC informatics toolso PHIN-VADS Status: A successful example of CDC informatics toolso PHIN-Dir Status: A good model of CDC informatics tools that is not fully developed, yeto Ontology tools Status: Pilot promising informatics tool that will have wide-ranging utility

NEDSS Future Vision and Lessons Learned

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Future NEDSS Priorities• Support national standards for exchange of electronic messages• Provide tools, technical assistance, and support to stakeholders

in achieving integrated surveillance system interoperability• Develop and support at CDC NEDSS data access that fully meets

stakeholder needs• Develop and support an evaluation research agenda that focuses

on local and state integrated surveillance systems• Increase cooperative agreement support to states and major

jurisdictions• Ensure that the legacy NBS meets emerging messaging

standards and other stakeholder requirements for usability and functionality

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• Electronic Lab (result) Reporting (ELR)o LabCorp, Mayo, ARUP collaborationo PHIN ELR standard now published

• PHIN Case Notifications (state-to-CDC)o 5 Guides now postedo Multiple guides in final SME review

• PHIN Case Reports (provider-to-state, state-to-state, system-to-system)o CMR project in collaboration with CSTE and AHIC

• Biosurveillance Use Case (MDS)o BioSense split-feed pilot project in Texas

Support national standards for exchange of electronic messages

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Data Elements Category CRSWg

CSTE SCG Review

CSTE SME Review

CSTE EC Review

Approved (CSTE PS process)

Notes:

Common data elements 11/2007 12/2007

12/2007 X Minimum requested.

Anthrax 11/2007 2/2008Received feedback with

minimal changes.

Hepatitis A (acute) 3/2008Expected

5/2008Reviewed by Wg members. Finalizing data elements.

Hepatitis B (acute) 11/2007 2/2008Have not received feedback.

Hepatitis C (acute) 3/2008Expected

5/2008Reviewed by Wg members. Finalizing data elements.

Tuberculosis 11/2007 2/2008Have not received feedback.

Tularemia 11/2007 2/2008Have not received feedback.

Case Report Content - Status

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Case Report Criteria - Status

Data Elements Category CRS WG

CSTE SCG Review

CSTE SME Review

CSTE EC Review

Approved (CSTE PS process)

Notes:

Anthrax

Hepatitis A (acute)

Hepatitis B (acute) 3/2008 5/2008

Developing narrative, but based on UT and Harvard’s work

Hepatitis C (acute)

Tuberculosis 3/2008 5/2008

Developing narrative, but based on UT and Harvard’s work

Tularemia

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• NEDSS Message Solutiono Softwareo Trainingo Collaboration, shared efforto Funding

• Case Report Standards (CMR Project)o Standards for core PH messageso Foundation for system interoperability

• NBS to provide import/export of standard PH core messages

• Communicate these standards to vendors and other PH system developers

Provide tools, technical assistance, and support to stakeholders in achieving integrated surveillance system interoperability

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• CDC SME sign-off on data content before publishing new message guides

• CDC SME sign-off on design of new data marts• Additional DMB and CDS resources

o New CDC project managero New (very experienced) business analyst (contractor)o New SAS programmer dedicated to working with CDC programs

(contractor)

• Commitment from CCID IT Governance Team to focus on a limited number of programs, the publicize successes

Develop and support at CDC NEDSS data access that fully meets stakeholder needs

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• Washington State COE – Kitsap County• Washington State – Seattle/King County• New Mexico NEDSS project• Other CoE projects• Other operational research projects

Develop and support an evaluation research agenda that focuses on local and state integrated surveillance systems

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Increase cooperative agreement support to states and major jurisdictions

• 2006 NEDSS ELC funding: $8,600,000• 2007 NEDSS ELC funding: $9,700,000• 2007 NEDSS ELC supplemental funding: $300,000• 2008 NEDSS ELC funding: $10,941,082

TOTAL (2000 – 2008) $ 88,160,000

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NEDSS ELC Impact on States FY08

• 69.33 IT staff directly supported• 20.72 Epi staff directly supported• Total Award was $10,941,082.33• Average Award for 56 jurisdictions was $195,376.47

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• NBS Development Team (CSC) increases from 16 to 23

• NBS stakeholders submit enhancement requests

• NBS stakeholders participate in future release scope

• NEDSS management team closely works with all NBS states to address system needs (e.g. performance, reliability, enhancements)

Ensure that the legacy NEDSS Base System meets emerging messaging standards and other stakeholder requirements for

usability and functionality

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NEDSS – Lessons Learned• Time to design, develop, implement is

typically underestimated• Cost to design, develop, implement, maintain

is typically underestimated• Public health technical support infrastructure

is often challenged• Executive sponsorship remains an important

component of a successful project

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NEDSS: Lessons Learned (cont.)• Verifying data completeness and accuracy is

extremely challenging during a period of transition when different surveillance information systems are being used for different conditions in each state and within a state

• A long moratorium on changes being made to NETSS legacy, message in addition to the long delay in NEDSS implementation, leaves CDC Programs without the ability to collect the data they need. • History shows that CDC will develop other ways of collecting

data, if approved solutions are not adequate. • Interim protocols should always be available

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• The complexity of the NEDSS relational multi-table database (compared to the flat NETSS single table database) imposes a burden on us in terms of training epidemiologists and data analysts to use NEDSS data

• Informaticians and epidemiologists use different vocabularies, thus making communication difficult

• States will need technical assistance to transition to NEDSS messaging

• CDC programs have a concern about the resources needed for surveillance integration (PAMS, Data Marts)

NEDSS: Lessons Learned (cont.)

Intersection of Scientific Disciplines

Database

Signal Detection

IT Infrastructure

Decision Support

DetectionSurveillance

Acute Response

Planned Response

Publ

ic H

ealth

Act

iviti

es Health Inform

atics

Adapted from: John H. Holmes, PhD, Center for Clinical Epidemiology andBiostatistics, University of Pennsylvania School of Medicine

Registration

Reporting

Analyses

Feedback

Action

Confirmation PublicHealth

Informatics

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Strengths, Weaknesses, Opportunities, and Strengths, Weaknesses, Opportunities, and ThreatsThreats

• Politics of control of data has been the Politics of control of data has been the primary obstacle to formation of a primary obstacle to formation of a national systemnational system

• Existing data remains siloed at the local Existing data remains siloed at the local and state leveland state level

• Building systems non collaboratively Building systems non collaboratively leads to low adoption ratesleads to low adoption rates

• Getting data directly from medical Getting data directly from medical facilities is challenging; facilities have facilities is challenging; facilities have limited IT resourceslimited IT resources

Integrated PH Investments

BioSurveillance Value

Low High

Low

High

Tipping Point!Integrated Public Health Investments

Produce BioSurveillance Value

BioSurveillance Transformation

“Do I really need this?”

“I can’t do without this!”