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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 BriefingFebruary 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 federal level and to 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 through the HHS SOC
What does Integrated Surveillance Mean?
In the process sense of the word, the term integrating Public Health Surveillance
means 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
What does Integrated Surveillance Mean?
In the process sense of the word, integrating PublicHealth Surveillance means working to achieve efficientand effective public health work practices that aresupported by interoperable information systems todetect, register, confirm, report, and analyze healthoutcome data while visualizing and reporting outmessages that guide [and are guided by] acute andplanned responses.
What does Integrated Surveillance Mean?
In the end-state sense of the word, integrated Public Health Surveillance
means 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 data
streams; 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 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
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 and reporting 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 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
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-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 a Data Mart for conditions NCIRD* has prevention 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 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)
20
What’s the difference between NNDSS, NETSS,
NEDSS, and NNDSS Link?
21
NNDSS technology neutral
NETSSHARS
TIMSSTD*MIS
Weekly Tables
Annual Summary
Data Release
NBSArboNETSARS
Influenza-associated pediatric mortality
PoliciesProcedures
Data
Information Systems
Products
NNDSS Link
NEDSS compatible systems
22
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)
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 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
24
Future 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
25
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
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 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
29
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)
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, 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)
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, 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
32
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
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 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
35
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
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 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)
37
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
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 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/
39
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
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 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
41
• 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.
44
Hospital orHealthcare
System
ClinicalLabs
Patient Registry
Healthcare Providers
Case Morbidity Report
STD Data
Hepatitis Data
TB Data
State or Local Health Department
Case-reporting
Case Notification
WHOWHO
Event Notification
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 to
electronic format
46
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
47
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
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 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)
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 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
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 Enterprise
Edition) standards• Product continues to evolve through
maintenance releases and incremental functionality
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 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
PublicHealth
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
OSOS
Authentication ServiceState Web Server Platform
NBSSystem
Files
NBS Presentation
Transportable Business Logic
NBS Persistance Layer
1f
NBS Security
Files
State DBMSServer
1d
3
NBS System Architecture
55
Simplified NBS Architecture
text
ODS RDB SRT
Data
Persistence
Sec
uri
ty
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.
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
57
Version Date Summary
1.0 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
59
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
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
Nov '09 Nov ‘10 Nov ‘11
Integrated Data Repository containing all NETSS diseases and conditions (delete)
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)
Web-browser Based Software (delete)
HL7 2.5 standards-based electronic messaging to CDC for all NETSS diseases and conditions
NEDSS-compliance = all new criteria are met
62
NEDSS Message Mapping Guides and 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 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
64
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
65
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
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 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
67
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
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 programs
with Users• Perform User acceptance testing• Establish Change Control process• Establish error-checking with feedback to CDC program and
data providers
69
Status of Message Specifications CDC 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
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Message SpecificationsProgram/Condition NETSS NEDSS
Animal Rabies No YesDomestic Arboviral (e.g. WNV) No PlannedHepatitis Yes YesFoodborne 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
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
73
HHS, AHIC, OMB, GAO, U.S. Congress
• National vision of integrated (interoperable) PHS systemso Ownership Status: CDC, in collaboration with national stakeholders [90%]
• Standards for meeting NHIN/AHIC requirementso Biosurveillance MDS Status: Widely known by the national community [60%]
o Case Reports to PH Status: CSTE and CDC working on this [30%]
o Notification Reports to CDC Status: Initial message mapping now posted to PHIN web site [40%]
o Treatment messages Status: Little work done, to date, for surveillance system support [10%]
• Enhance biosurveillance data flow to U.S. agencieso National biosurveillance Status: NEDSS data indirectly support this initiative [20%]
o IHRs Status: NEDSS data are part of the reporting system [75%]
o PAPHA Status: NEDSS is part of this system [50%]
o 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) [95%]o EVM Status: This process is underway but moving slowly [50%]o 508 Compliance Status: A current report to HHS was provided in 2007 [90%]o OMB PRA Status: Approval obtained, renewal package submitted to OMB [95%]o Audits, CJs, questions Status: NEDSS continues to fare satisfactorily [80%]
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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%]
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NEDSS States (non-NBS adopters)• National vision of integrated (interoperable) PHS systems
o PHIN vision Status: Still evolving [70%]
o Open source, SOA, Grid Status: Confusing to most stakeholders [10%]
• Standards for meeting PHIN requirementso ELR Status: Tech specs nearing completion; major challenges in tech support [50%]
o Case Notification to CDC Status: Initial specs (v1) completed, much remains; probable challenges in tech support [25%]
o Case Reports to PH Status: Prototype specs (v1) completed, much remains; probable challenges in tech support [10%]
• 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: Adoption increasing; challenges in tech support [30%]
o PHIN-MS Status: Adoption widespread; challenges in tech support [90%]
o PHIN-VADS Status: Adoption limited; challenges in tech support [25%]
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%]
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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-CompliantStatus: 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%]
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DISSS, NCPHI, CCHIS, CDC• CDC vision of integrated (interoperable) PHS systems
o 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%]
What is the Future Vision for NEDSS?
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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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• 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 resourceso 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
83
• 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 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
86
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 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
88
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. This problem is not included in considering NEDSS solutions.
• Interim protocols should always be available
90
• 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
Pu
bli
c H
ealt
h A
ctiv
itie
s Health
Info
rmatics
Adapted from: John H. Holmes, PhD, Center for Clinical Epidemiology and
Biostatistics, University of Pennsylvania School of Medicine
Registration
Reporting
Analyses
Feedback
Action
Confirmation PublicHealth
Informatics