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Evolution of IntegratedSurveillance in the United States

Scott J.N. McNabb, Ph.D., M.S.

Ruth Ann Jajosky, D.M.D., M.P.H.Robert Fagan

Scott 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 Briefing

February 15, 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.



Perspectives & Points-of-View



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.



What is case reporting?

Actions taken by providers* to recognize

and report a condition of public health

importance** to a local, county, or state

public 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 for the federallevel and to notify the federal public healthsystem (e.g., through the National NotifiableDiseases Surveillance System [NNDSS])

• Actions taken by a local, state, and national

agency to recognize a public healthemergency of international concern (PHEIC)and notify the World Health Organizationthrough the HHS SOC



What does Integrated Surveillance Mean?

In the process sense of the word, the term

integrating Public Health Surveillancemeans achieving

N – 1 systems through which CDC is

notified of health outcomes



Integrating Public Health Surveillance(interoperating the silos)

A B C D E

Case Reporting




In the process sense of the word,

integrating PublicHealth Surveillance means working to

achieve efficient

and effective public health work

practices that aresupported by interoperable information

systems to

detect, register, confirm, report, and




In the end-state sense of the word,integrated Public Health Surveillancemeans a cross-program, person-based

registry of health data from case reports

vis-à-vis an event-based one.



What does Integrated Surveillance Mean?In the end-state sense of the word, integrated PHS means one

sign-on, data-entry once, and one system that allows individual

access from any computer; one source and set of individualized

public health tools for customized data views, command sets, and

public health management; one set of guidelines for establishing

and managing databases; one-stop shopping for information in

public health informatics and one source about integration of

public health information for all users; one set of standards for

"bringing together" or interoperating existing or new datastreams; one grid with one access to all information, but all

information is not stored in one place; one medicine (i.e., health

without regard to species differences); yet one size does NOT fit all.



National Notifiable Diseases

Surveillance System(NNDSS)

Ruth Ann Jajosky, D.M.D., M.P.H.



12

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 isnecessary 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 nationalsurveillance case definitions



13

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 andreporting of NNID in 1961



14



15

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 asindicated above but also to implement immediatepublic 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



16

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



17



18

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-NETSSconversion

• 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 a Data Mart for conditions NCIRD* hasprevention and control responsibilities

• Complex transition converting systems and data• Quality control and quality assurance• Resource intensive• Burden on data analysts• Steep learning curve (using NEDSS data in NEDSS format)

*National Center for Immunization and Respiratory Diseases



19

Terms• NNDSS• State-based public health surveillance system

• National Center for Public Health Informatics compiles the datawhich 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 andother systems

• CDC-developed a surveillance information system (NBS)

• There are other dimensions (NEDSS discussion later inpresentation)



20

What’s the difference

between NNDSS, NETSS,NEDSS, and NNDSS Link?



21

NNDSStechnology neutral

NETSSHARS

TIMS STD*MIS

Weekly Tables

Annual Summary

Data Release

NBSArboNETSARS

Influenza-associatedpediatric mortality

PoliciesProcedures

Data

InformationSystems

Products

NNDSS Link

NEDSScompatiblesystems



22

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

NEDSS:Supports

Reporting andNotification of Selected NNIDplusElevated Blood Lead Levels,PHLIS, and FoodNet

NNDSS:77 NationallyNotifiable

InfectiousDiseases(NNID; e.g.,West NileVirus)

NETSS:SupportsReporting andNotification of SelectedNNID

SurveillanceWorld (e.g., BRFSS)



23

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 allNNDSS reporting jurisdictions

• Transitional step toward working with OntoReason togather 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 morecomplete case-reporting to Public Health and toreduce the burden on Public Health stakeholders togather this information on their own



24

Future Work with CSTE• 2008 SRCA

• Development of algorithms to trigger

case reporting from the healthcaresector to local, county, and statepublic health

• Transform human-readable nationalsurveillance case definitions tomachine-readable format



25

Collaborative Work with CDCPrograms 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 containingNNDSS data

• Automated logical error-checking with feedback andsummary reports to data providers

• Current and historical data



The History of

NETSS-to-NEDSSRobert Fagan



28

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 andphone (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 byphone or fax

• Disease counts sent to CDC based on state-determined definitions, not nationally standardizedcase definitions



30

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, anddiseases

• Only commonality was the 40-byte message standard

• CDC developed data-interchange standard to translate receivedmessages

• A positive CDC assessment of the pilot supported thedevelopment of National ElectronicTelecommunications System for Surveillance (NETSS)



31

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, easyto understand, stable system which neededlimited 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



32

1993 – 1995: EPSVPD

• Expanded Program for Surveillance of VaccinePreventable 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



33

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



34

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 werereviewed for possible adoption

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

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



36

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 andfunds

• 1999 – Letter from J. Koplan, CDC Director: “I amrequesting that any other surveillance systemsdevelopment effort be postponed or suspended until you obtain a waiver from HISSB”

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



37

NETSS vis-à-vis NEDSS• NETSS

• OMB-approved forms

• NEDSS

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

• JAD sessions held with federal and state and local publichealth staff to identify data elements to integrate intoNEDSS

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

NETSS

• Surveillance program worksheets



38

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 thedevelopment of efficient, integrated, and interoperablesurveillance systems at federal, state and local levels.It is a major component of the Public HealthInformation Network (PHIN)”

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



39

Public Health Information Network (PHIN)

• Engaged in improving public health bydeveloping and disseminating best practices

in research and processes to achievemeaningful and interoperable public healthinformation systems

• PHIN was an outgrowth of NEDSS to embrace

broader public health surveillance and ITneeds borne from shortcomings during 9/11and anthrax events



40

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 toleverage state resources to build solutions

• Develop the CDC side of the system right away after distributionof 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



41

• Work with CDC programs to co-develop disease specificprogram modules

• Divide CDC programs into groups by deployment versionsas 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 thedeveloped application

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

• Hire dedicated, salaried CDC employee to help statesimplement NETSS ESPVPD

ESP & NETSS: Lessons Learned (2)



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



NEDSS: Yesterday, Today, andTomorrow

Scott Danos, M.P.H.



44

Hospital orHealthcare

System

ClinicalLabs

PatientRegistry

HealthcareProviders

CaseMorbidity

Report

STDData

HepatitisData

TBData

State or Local HealthDepartment

Case-reporting

CaseNotification

WHOWHO

EventNotification

ELR

Notifiable Disease Data Flow



45

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 toelectronic format



46

Issues at CDC in NEDSSImplementation (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, withdeployment in 1998• Not realized

• HISSB authorized to distribute $321,000/year to various CDCprograms through NEDSS• Standards needed to launch project• Funds were a drop-in-the-bucket

• Contributions by technical SMEs were considered but notembraced in lieu of exploring a possible explosive growth inInternet capability• Insufficient public health end-user input about what could and should be

built



47

Issues at CDC in NEDSSImplementation (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



48

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 containinglaboratory 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)



49

Aspects of NEDSS-Base System(NBS)



50

NBS Fact Sheet (1)• Vision• NBS is a platform which many public health surveillance

systems, processes, and data can be integrated in a secureenvironment

• Implementation standards are provided for states developingtheir 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



51

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 EnterpriseEdition) standards

• Product continues to evolve through

maintenance releases and incrementalfunctionality



52

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



53

Comparing NEDSS and silosystems at a state

NEDSS STD-MIS

15 servers 1 desktop

Testing

Production

Fail-over



State Security Firewall

Web Server

Authentication

Service

b

XMLProcessors

LDAPServer

ODBC/JDBC

AVR(SAS)

JBOSS Application Server

Router /

Translator

Public

Health

Partner

L3 EncryptionL2 EncryptionRoutin

gL1 Encryption

NBS Server

Encryption

1a

1b

1c

1e

2

1

5

4

6

7

8

NBS Security Firewall

State Web Server

OS

OS

Authentication

ServiceState Web Server Platform

NBS

SystemFiles

NBS Presentation

Transportable Business Logic

NBS Persistance Layer

1f

NBS

Security

Files

State DBMS

Server

1d

3

NBS System Architecture



55

Simplified NBS Architecture

text

ODS RDB SRT

Data

Persistence

S e c u r i t y

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 businessfunctionality of the system. This layer communicates with the Presentation Layer in obtaining user inputand 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 datafrom 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 tomanipulate this data.

Security Layer Definition: Spanning across all other layers, this layer dealswith securing system resources from unauthorized users or software programsby enforcing authentication and authorization rules based on business rulesfor the system.



56

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



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



59

NEDSS Status in US

16161310Standards-based Electronic Messaging

15

21

15

17

Nov ‘04

383019NEDSS-compliance (criteria 1, 2, & 3)

443728Web-browser Based Software

413519Electronic Lab Result (ELR) Messaging

443623Integrated Data Repository

Nov '07Nov '06Nov '05



60

2008 NEDSS-compliance Estimates

State Requirements Confidence Est.

Alaska IDR and Web System 95%Arizona ELR 95%Arkansas ELR 95%California All 3 areas 5%

Connecticut All 3 areas 80%Iowa ELR 75%Kansas ELR 50%Minnesota IDR and Web System 50%Mississippi IDR and Web System 5%New Hampshire ELR 95%Utah All 3 Areas 5%Wyoming ELR 95%



61

NEDSS Status in the United States: proposed new criteria

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

NEDSS-compliance = all new criteria are met

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

Web-browser Based Software (delete)

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

reports

Integrated Data Repository containing all NETSS diseases and

conditions (delete)

Nov ‘11Nov ‘10Nov '09



62

NEDSS Message Mapping Guidesand CDC Program Datamarts



63

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 toreceive NND

Messages at CDC

Design & Implement

CDC Data marts that

meets stakeholder’s

needs

Establish processto manage guide

changes

Gather Message

guides content

from SMEs



64

Key Steps to Developingthe Message Mapping Guide• Gather message mapping guide data elements from Program

and 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 theProgram’s approval to post to SiteScape

• Broadcast SiteScape posting to CDC programs and externalpartners



66

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 assistancerequests 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



68

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

data providers



69

Status of Message SpecificationsCDC Program SiteScape External Review PHIN Web

Program/Condition POC Review Approval Posting Complete Site Posting

Animal Rabies Jesse Blanton Aug 07

Domestic Arboviral (e.g. WNV) Jennifer Lehman Jan 08

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

Generic Ruth Jajosky Nov 07 Jan 08

Hepatitis Kathleen Gallagher Feb 07 Jul 07 09/10/07 01/22/08

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

Lyme Paul Mead Aug 07

Malaria Sonja Mali

NCIRD/BMIRD bacterial Pam Srivastavapathogens Tammy Skoff

NCIRD/VPDs Pam Srivastava Aug 07 Dec 07 12/18/07ReddBarskev

STD Sam Grossclose Sep 07 Nov 07

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

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



70

Message SpecificationsProgram/Condition NETSS NEDSS

Animal Rabies No YesDomestic Arboviral (e.g. WNV) No PlannedHepatitis Yes YesFoodborne No Yes

Lead 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



71

Data Marts

The Malaria Program has a view of the malaria data in the NNDSS Data Mart

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



72

NEDSS Major Stakeholders

• HHS, AHIC, OMB, GAO, U.S. Congress

• CDC national programs

• NEDSS States (non-NBS adopters)

• NEDSS States (NBS adopters)

• DISSS, NCPHI, CCHIS, CDC



74

CDC National Programs

• CDC vision of integrated (interoperable) PHS systemso Integrated Surveillance Status: Definition still evolving within the CDC community [50%]

o Who leads this effort at CDC Status: Tacit recognition of NCPHI role but inadequate collaboration [25%]

• Access to data submitted in NEDSS formato Data access and analysis Status: Multi-year efforts beginning to show results [40%]

• Standards and Informatics tools for CDC systemso PHIN-VADS Status: Not widely known or embraced by the CDC community [20%]

o PHIN-MS Status: Limited adoption by the CDC community [20%]

o Notification Reports to CDC Status: Limited awareness or adoption by the CDC community [10%]

o MSS Status: Some interest by CDC community but limited adoption [10%]

o PHIN-Dir Status: Limited awareness or adoption by the CDC community [5%]

o Ontology tools Status: Near total unawareness by CDC community [5%]

• Funding to support systems integration project effortso System Development Status: No support available [0%]



76

NEDSS States (NBS adopters)

• NBS evolves to better meet stakeholder needso Continued Development Status: Contracts in place but scope will be limited [80%]

o NBS Performance Status: Currently meeting stakeholder needs [90%]

• NBS supports PHIN requirementso NBS Is PHIN-Compliant Status: Work underway to meet these requirements [90%]

• Funding (ELC, BT, other) assistanceo ELC Status: Level funding [75%]

o BT Coop Ag Status: Risk of diminished funding [50%]

o State IT support Status: Frequently experiencing reductions and control by PH project managers [50%]

• Informatics tools and serviceso MSS Status: Supplied in NBS and MSS [90%]

o PHIN-MS Status: Supplied in NBS and MSS [90%]

o PHIN-VADS Status: Supplied in NBS and MSS [90%]

o PHIN-Dir Status: Adoption limited; challenges in tech support [10%]

o Ontology tools Status: Pilot project, much remains to be done; challenges in tech support [5%]



77

DISSS, NCPHI, CCHIS, CDC

• CDC vision of integrated (interoperable) PHS systemso PHIN Vision Status: Improved, functional version [80%]

o Open source, SOA, Grid Status: Conceptually clear but inadequately described operationally [60%]

• Tight integration with other PHIN systemso OMS, BioSense, etc. Status: This is the vision but challenges remain [20%]

• 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 [40%]

• Informatics tools and serviceso MSS Status: Project well established [90%]

o PHIN-MS Status: A successful example of CDC informatics tools [90%]

o PHIN-VADS Status: A successful example of CDC informatics tools [90%]

o PHIN-Dir Status: A good model of CDC informatics tools that is not fully developed, yet [10%]

o Ontology tools Status: Pilot promising informatics tool that will have wide-ranging utility [25%]



79

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 meetsstakeholder needs

• Develop and support an evaluation research agenda that focuseson local and state integrated surveillance systems

• Increase cooperative agreement support to states and major jurisdictions

• Ensure that the legacy NBS meets emerging messagingstandards and other stakeholder requirements for usability andfunctionality



80

• Electronic Lab (result) Reporting (ELR)o LabCorp, Mayo, ARUP collaboration

o 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



81

• NEDSS Message Solutiono Software

o Training

o Collaboration, shared effort

o Funding

• Case Report Standards (CMR Project)o Standards for core PH messages

o 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 inachieving integrated surveillance system interoperability



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

• CDC SME sign-off on design of new data marts

• Additional DMB and CDS resourceso New CDC project manager

o New (very experienced) business analyst (contractor)

o New SAS programmer dedicated to working with CDC programs(contractor)

• Commitment from CCID IT Governance Team tofocus on a limited number of programs, thepublicize successes

Develop and support at CDC NEDSS data access that fully meetsstakeholder needs



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• Washington State COE – Kitsap County

• Washington State – Seattle/King County

• New Mexico NEDSS project

• Other CoE (Utah) projects

• Other operational research projects

Develop and support an evaluation research agenda that focuses onlocal 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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NEDSS ELC Fund History

* All 2008 data entries are provisional

** Data for 2000 and 2001 were compiled from three sources: ELC - EIP - CSTE

# of Funded Amount Max Min Award

CY Jurisdictions Awarded Award Award Average

2008* 56 $10,941,082 $432,713 $25,046 $195,376

2007 55 $9,965,771 $449,085 $3,845 $181,196

2006 52 $8,560,312 $356,100 $18,741 $164,621

2005 50 $7,676,830 $464,411 $3,740 $153,537

2004 52 $10,981,849 $502,522 $30,000 $211,189

2003 52 $12,569,447 $776,625 $50,301 $251,389

2002 34 $9,623,165 $1,258,137 $2,300 $283,034

2001** 42 $11,628,645 $861,457 $32,700 $276,873

2000** 48 $9,499,973 $1,170,000 $54,000 $197,916



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• NBS Development Team (CSC) increases from16 to 23

• NBS stakeholders submit enhancement requests• NBS stakeholders participate in future releasescope

• NEDSS management team closely works with allNBS states to address system needs (e.g.

performance, reliability, enhancements)

Ensure that the legacy NEDSS Base System meets emergingmessaging 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 typicallyunderestimated

• Public health technical support infrastructure is oftenchallenged

• Executive sponsorship remains an important component of asuccessful project



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

challenging during a period of transition when differentsurveillance information systems are being used for differentconditions 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 NEDSSimplementation, leaves CDC Programs without the ability tocollect the data they need.• History shows that CDC will develop other ways of collecting data, if

approved solutions are not adequate. This problem is not included inconsidering NEDSS solutions.

• Interim protocols should always be available



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

• Informaticians and epidemiologists use differentvocabularies, thus making communication difficult

• States will need technical assistance to transition to NEDSSmessaging

• 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

P u b l i c H e a l t h A

c t i v i t i e s H

e al t

h I nf or m a t i c s

Registration

Reporting

Analyses

Feedback

Action

Confirmation PublicHealth

Informatics

netss to nedss briefing

Documents