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" ! HOUSE OF REPRESENTATIVES 109TH CONGRESS

2d Session

REPORT

2006

109–436

Union Calendar No. 243

STRENGTHENING DISEASE SURVEILLANCE

EIGHTH REPORT

BY THE

COMMITTEE ON GOVERNMENT REFORM

Available via the World Wide Web: http://www.gpoaccess.gov/congress/

index.html

http://www.house.gov/reform

APRIL 25, 2006.—Committed to the Committee of the Whole House on

the State of the Union and ordered to be printed

(II)

COMMITTEE ON GOVERNMENT REFORM

TOM DAVIS, Virginia, Chairman

CHRISTOPHER SHAYS, Connecticut

DAN BURTON, Indiana

ILEANA ROS-LEHTINEN, Florida

JOHN M. MCHUGH, New York

JOHN L. MICA, Florida

GIL GUTKNECHT, Minnesota

MARK E. SOUDER, Indiana

STEVEN C. LATOURETTE, Ohio

TODD RUSSELL PLATTS, Pennsylvania

CHRIS CANNON, Utah

JOHN J. DUNCAN, JR., Tennessee

CANDICE S. MILLER, Michigan

MICHAEL R. TURNER, Ohio

DARRELL E. ISSA, California

JON C. PORTER, Nevada

KENNY MARCHANT, Texas

LYNN A. WESTMORELAND, Georgia

PATRICK T. MCHENRY, North Carolina

CHARLES W. DENT, Pennsylvania

VIRGINIA FOXX, North Carolina

JEAN SCHMIDT, Ohio

——— ———

HENRY A. WAXMAN, California

TOM LANTOS, California

MAJOR R. OWENS, New York

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

CAROLYN B. MALONEY, New York

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

DANNY K. DAVIS, Illinois

WM. LACY CLAY, Missouri

DIANE E. WATSON, California

STEPHEN F. LYNCH, Massachusetts

CHRIS VAN HOLLEN, Maryland

LINDA T. SANCHEZ, California

C.A. DUTCH RUPPERSBERGER, Maryland

BRIAN HIGGINS, New York

ELEANOR HOLMES NORTON, District of

Columbia

———

BERNARD SANDERS, Vermont

(Independent)

DAVID MARIN, Staff Director

KEITH AUSBROOK, Chief Counsel

TERESA AUSTIN, Chief Clerk

PHIL BARNETT, Minority Chief of Staff/Chief Counsel

SUBCOMMITTEE ON NATIONAL SECURITY, EMERGING THREATS, AND INTERNATIONAL

RELATIONS

CHRISTOPHER SHAYS, Connecticut, Chairman

KENNY MARCHANT, Texas

DAN BURTON, Indiana

ILEANA ROS-LEHTINEN, Florida

JOHN M. MCHUGH, New York

STEVEN C. LATOURETTE, Ohio

TODD RUSSELL PLATTS, Pennsylvania

JOHN J. DUNCAN, JR., Tennessee

MICHAEL R. TURNER, Ohio

JON C. PORTER, Nevada

CHARLES W. DENT, Pennsylvania

DENNIS J. KUCINICH, Ohio

TOM LANTOS, California

BERNARD SANDERS, Vermont

CAROLYN B. MALONEY, New York

CHRIS VAN HOLLEN, Maryland

LINDA T. SANCHEZ, California

C.A. DUTCH RUPPERSBERGER, Maryland

STEPHEN F. LYNCH, Massachusetts

BRIAN HIGGINS, New York

EX OFFICIO

TOM DAVIS, Virginia HENRY A. WAXMAN, California

LAWRENCE J. HALLORAN, Staff Director and Counsel

KRISTINE K. FIORENTINO, Professional Staff Member

ROBERT A. BRIGGS, Clerk

ANDREW SU, Minority Professional Staff Member

LETTER OF TRANSMITTAL

HOUSE OF REPRESENTATIVES,

Washington, DC, April 25, 2006.

Hon. J. DENNIS HASTERT,

Speaker of the House of Representatives,

Washington, DC.

DEAR MR. SPEAKER: By direction of the Committee on Government Reform, I submit herewith the committee’s eighth report to

the 109th Congress. The committee’s report is based on a study

conducted by its Subcommittee on National Security, Emerging

Threats, and International Relations.

TOM DAVIS,

Chairman.

(III)

(V)

C O N T E N T S

Page

Executive Summary ................................................................................................. 1

I. Background .................................................................................................... 2

A. Centers for Disease Control and Prevention [CDC] ............................. 4

B. Department of Defense Global Emerging Infections Surveillance and

Response System [DOD–GEIS] ............................................................ 9

C. Government Accountability Office [GAO] Reports ............................... 11

II. Discussion ....................................................................................................... 11

A. Findings ................................................................................................... 11

B. Recommendation ..................................................................................... 14

APPENDIXES

Appendix I ................................................................................................................ 17

Appendix II ............................................................................................................... 18

Appendix III ............................................................................................................. 23

Union Calendar No. 243

109TH CONGRESS REPORT " ! HOUSE OF REPRESENTATIVES 2d Session 109–436

STRENGTHENING DISEASE SURVEILLANCE

APRIL 25, 2006.—Committed to the Committee of the Whole House on the State of

the Union and ordered to be printed

Mr. TOM DAVIS, from the Committee on Government Reform

submitted the following

EIGHTH REPORT

On April 6, 2006, the Committee on Government Reform approved and adopted a report entitled, ‘‘Strengthening Disease Surveillance.’’ The chairman was directed to transmit a copy to the

Speaker of the House.

EXECUTIVE SUMMARY

The spread of the H5N1 virus and the threat of pandemic influenza is the most recent reminder of the need for sensitive, vigilant

disease surveillance. In 2002, the world conducted an involuntary,

live-fire exercise of public health capacity against bioterrorism. Severe Acute Respiratory Syndrome [SARS] emerged from the microbial hothouse of the Far East through the same vulnerabilities and

vectors terrorists would exploit to spread weaponized, genetically

altered disease. The global response to SARS underscores the vital

significance of sensitive disease surveillance in protecting public

health from natural, and unnatural, outbreaks. It also discloses serious gaps and persistent weaknesses in international and U.S.

health monitoring.

The lessons of the West Nile virus and mail-borne anthrax have

not gone unheeded. Substantial enhancements have been made to

the accuracy, speed and breadth of health surveillance systems at

home and abroad. The limited impact of SARS here can be attributed, in part, to increased preparedness to detect, control and treat

outbreaks of known and unknown diseases.

But the surveillance system standing guard over America’s public health today is still a gaudy patchwork of jurisdictionally narrow, wildly variant, technologically backward data collection and

2

communications capabilities. Records critical to early identification

of anomalous symptom clusters and disease diagnoses are not routinely collected. Formats for recording and reporting the same data

differ widely between cities, counties and states. Many key records

are still generated on paper, faxed to state or Federal health authorities and entered manually one or more times into potentially

incompatible databases.

In a world made smaller by the speed of international travel and

the rapid mutation of organisms in our crowded midst, the incubation period between local outbreak and global pandemic is shrinking. Virulent, drug-resistant organisms easily traverse the geographic and political boundaries that still define, and inhibit, public health systems. Efforts to build a more modern ‘‘system of systems’’ envision routine collection and rapid dissemination of realtime data from public and private health systems and laboratories.

Early warning capabilities would be enhanced through the fusion

of innovative syndromic surveillance—automated screening of

emergency room traffic, pharmacy sales, news wires and other public data streams for potentially significant early signs of an outbreak.

Pieces of this planned health monitoring system can be assembled at different times and places, but no fully national system yet

integrates the observations and communications needed to protect

public health from rapidly emerging biological hazards. Successfully operating the elaborate, elegantly sensitive surveillance network of the future will require unprecedented levels of human skill,

fiscal resources, medical information and intergovernmental cooperation.

At this moment, sophisticated radars scan the skies and the seas

to detect the approach of forces hostile to the peace and sovereignty

of this Nation. A similarly unified, sensitive system of disease sensors is needed to detect the advance of biological threats to our

health and prosperity.

Finding

1. Disease surveillance systems are fragmented and have been

slow to adapt to new technologies which could improve the timeliness of outbreak reporting.

Recommendation

1. The Centers for Disease Control and Prevention should clearly

define the technical parameters and set a specific timeframe for establishing a unified national disease surveillance system to replace

the current patchwork of reporting and monitoring programs.

I. BACKGROUND

According to the Centers for Disease Control and Prevention:

Public Health Surveillance is the ongoing systematic collection, analysis and interpretation of health data essential

to the planning, implementation, and evaluation of public

health practice, closely integrated with the timely dissemination of these data to those who need to know. The final

link in the surveillance chain is the application of these

3

1 Rebecca A. Meriwether, ‘‘Blueprint for a National Public Health Surveillance System for the

21st Century,’’ Online at: [http://www.cste.org/pdffiles/Blueprint.pdf] (accessed Mar. 23, 2006). 2 U.S. General Accounting Office, Pub. No. GAO–03–373, Bioterrorism: Preparedness Varied

Across State and Local Jurisdictions, 18–20 (April 2003). 3 Joe Lombardo and LTC Julie Pavlin MD MPH, ‘‘Bio Surveillance: Utilizing ESSENCE II in

Emergency Response,’’ presented at the 2003 NDMS Conference, Mar. 9, 2003, p. 3. 4The New York Times, ‘‘Threats and Responses: The Bioterror Threat,’’ Jan. 27, 2003, p. 3.

5 Joe Lombardo and LTC Julie Pavlin MD MPH, ‘‘Bio Surveillance: Utilizing ESSENCE II in

Emergency Response,’’ presented at the 2003 NDMS Conference, Mar. 9, 2003, p. 7.

data to prevention and control. A surveillance system includes a functional capacity for data collection, analysis,

and dissemination linked to public health programs.1

Concerns about bioterrorism, and improvements in technology,

have led to an increased emphasis on the development of early

warning systems to detect the presence of disease. The sooner public health authorities are made aware of contagious disease outbreaks, the sooner protective measures can be put in place to contain and control its spread. An effective public health response will

depend on the timeliness and quality of communication among

local, state and Federal levels.

There are several types of surveillance systems:

• Passive surveillance systems rely on laboratory and hospital staff

and providers to take the initiative to provide data on diagnosed

illnesses to health departments. The health department will analyze and interpret the information.

• An active surveillance system is one in which public health officials contact laboratories, hospitals and providers to acquire information on conditions or diseases in order to identify cases.2

• A syndromic surveillance system monitors various non-diagnostic

data elements that may indicate emergence of disease in a population.

• A diagnosis based surveillance system monitors only physician or

laboratory confirmation of a disease.3

Traditional disease reporting and surveillance methods were

paper-based and relied on astute clinicians. In the past, accuracy

was valued over speed when it came to disease surveillance. Traditional surveillance systems required a disease to be diagnosed before it was reported. Physicians and public health officers would

gather data and send paper copies by mail. Federal, state and private laboratories would determine the cause of disease and confirm

diagnoses. However, this process could take several days to weeks.4

Recent advances in technology have led to the development of

automated systems that can track symptoms along with demographic information in order to provide earlier notification of potential outbreaks. Syndromic surveillance involves monitoring the population for clusters of symptoms that may provide an early warning

of the presence of diseases. It is the, ‘‘collection and analysis of prediagnosis information that lead to an estimation of the health status of the community.’’ 5

Syndromic surveillance uses health care indicators such as emergency room primary complaint, international classification of disease billing codes, requests for specific laboratory tests, and overthe-counter medication sales. These indicators are then grouped

4

6 Joe Lombardo and LTC Julie Pavlin MD MPH, ‘‘Bio Surveillance: Utilizing ESSENCE II in

Emergency Response,’’ presented at the 2003 NDMS Conference, Mar. 9, 2003, p. 7. 7 Joe Lombardo and LTC Julie Pavlin MD MPH, ‘‘Bio Surveillance: Utilizing ESSENCE II in

Emergency Response,’’ presented at the 2003 NDMS Conference, Mar. 9, 2003, pps. 7–8. 8 CDC Web site article on the National Electronic Disease Surveillance System [NEDSS], p.

1. Online at: [http://www.cdc.gov/nedss/index.htm] (assessed Mar. 23, 2006). 9 CDC Web site article on the National Electronic Disease Surveillance System [NEDSS], p.

1. Online at: [http://www.cdc.gov/nedss/index.htm] (assessed Mar. 23, 2006). 10 CDC Web site article on the National Electronic Disease Surveillance System [NEDSS], p.

1. Online at: [http://www.cdc.gov/nedss/index.htm] (assessed Mar. 23, 2006). 11 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004) p. 4.

into specific syndromic categories such as respiratory, gastrointestinal, neurological, dermatological, febrile, etc.6 Other data

sources for disease indicators include school absenteeism, pharmaceutical sales, nursing home information and animal and agriculture health. Syndromic surveillance looks for the change in the

distribution or frequency of health indicators or syndromic

groupings of indicators compared to anticipated occurrences.7 This

can lead to a more timely notification process since the information

is based on symptom reporting and not diagnosis. However

syndromic surveillance systems can generate false positives (detecting an event that isn’t there). A system that is sensitive and

timelier will have a higher rate of false positives. Thus a balance

must be created between the timeliness of detection and the ability

to respond to and pay for the cost of false positives.

A. CENTERS FOR DISEASE CONTROL AND PREVENTION [CDC]

The Centers for Disease Control and Prevention have taken steps

toward strengthening U.S. disease surveillance and testing a national surveillance system to provide early warning of public health

threats.

The National Electronic Disease Surveillance System [NEDSS] is

a CDC 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.’’ 8 The initiative is designed to, ‘‘1) facilitate the

electronic transfer of appropriate information from clinical information systems in the health care industry to public health departments, 2) reduce provider burden in the provision of information,

3) enhance both the timeliness and quality of information provided.’’ 9

The vision of NEDSS is, ‘‘to have integrated surveillance systems

that can transfer appropriate public health, laboratory, and clinical

data efficiently and securely over the Internet. This will help improve the Nation’s ability to identify and track emerging infectious

diseases and potential bioterrorism attacks as well as to investigate

outbreaks and monitor disease trends.’’ 10 NEDSS is designed to

make electronic disease reporting timely, accurate and complete, by

consolidating and standardizing the many different systems used

by state health departments to report disease data to CDC.11

NEDSS brings together different surveillance systems by establishing standards for data, information architecture, security and

information technology. These standards will enable patient data to

be entered once at the point of care, instead of being re-entered by

local and state health officials. By standardizing this information,

5

12 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 11. 13 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 6. 14 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, pps. 10–11. 15 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, pps. 36–37. 16 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, pps. 36–37. 17 E-mail correspondence from Zeno W. St. Cyr, Senior Legislative Analyst, Department of

Health and Human Services to Subcommittee on National Security, Emerging Threats, and

International Relations, Kristine K. Fiorentino, professional staff member (Jan. 11, 2006) (7:16

p.m.). See committee files.

NEDSS will help health officials to recognize patterns of potentially

related cases nationwide. Data can be shared easily.12

The CDC created NEDSS in order to move disease reporting

from a paper based system to an electronic, real-time reporting system.13 NEDSS would link the health care system electronically and

enable public health officials to be notified as soon as clinical laboratory receives a specimen, or makes diagnoses. According to Dr.

David Fleming, Deputy Director for Public Health Science, CDC,

In the future, NEDSS coupled with a electronic real-time

reporting of births and deaths (vital statistics) and computerized medical records, not only in hospitals but also in

ambulatory care offices, could facilitate immediate awareness of unusual illnesses such as anthrax or smallpox, as

well as our ability to detect more subtle problems that may

be dispersed across the country.14

Dr. Fleming stated, ‘‘The fundamental principle that NEDSS is

operating on is to say that, independent of whether systems are

homegrown or developed outside, that they have to conform to an

agreed-upon set of strict standards that assures interoperability.’’ 15

He further explained,

At the end of the day, these systems will be indistinguishable and transparent from each other as far as enabling

the needed transfer of information. But the reality is—is

that in different jurisdictions there are different needs and

issues such that it does make sense for a particular jurisdiction adhering to a set of standards to say, we want to

be able to customize this to meet not only the national

needs but our local needs as well.16

However, as of January 3, 2006, only 11 states were using the

CDC NEDSS Base System [NBS] to send reportable public health

case data to CDC. Four additional states were in the final testing

phase of the NBS with plans to send data to CDC in the next 2

to 4 months. Several states were still in early discussions with

CDC regarding the potential for using NBS in the future.17

6

18 Journal of Urban Health, ‘‘Syndromic Surveillance Using Minimum Transfer of Identifiable

Data: The Example of the National Bioterrorism Syndromic Surveillance Demonstration Program,’’ Jan. 24, 2003, p. 1. 19 National Journal, ‘‘Health Plans Search For Bioterror Symptoms,’’ Apr. 19, 2003, p. 1. 20 CDC BioWatch information sheet received as an attachment in an E-mail from Zeno W. St.

Cyr, Senior Legislative Analyst, Department of Health and Human Services to Subcommittee

on National Security, Emerging Threats, and International Relations, Kristine K. Fiorentino,

professional staff member (Jan. 11, 2006) (7:16 p.m.). See committee Files. 21 Chairman Tom Davis, Committee on Government Reform correspondence with Dr. Julie L.

Gerberding, Director of the Centers for Disease Control and Prevention, and Michael Chertoff,

Secretary of the Department of Homeland Security, October 3, 2005. See also Assessing Anthrax

Detection Methods, hearing before the Subcommittee on National Security, Emerging Threats,

and International Relations of the Committee on Government Reform, House of Representatives,

109th Cong., 1st sess., Apr. 5, 2005, Serial No. 109–57, U.S. Government Printing Office, Washington: 2005.

The CDC is also collaborating with the American Association of

Health Plans, Harvard Medical School, five health plans or physician groups (Harvard Pilgrim Health Care/Harvard Vanguard Medical Associates (Massachusetts), Health Partners (Minnesota), Kaiser Permanente (Colorado), Scott and White Healthcare System

(Texas), the Austin Regional Clinic (Texas)), and Optum, a nationwide consumer health information company; to implement a

syndromic surveillance system covering more than 20 million individuals with pre-paid healthcare in all 50 states. This system uses

data from routine and urgent office visits and from nurse telephone

triage and health information systems. Information is received

daily, and syndromes are grouped into specified geographic regions.18

The system will be based on an earlier project between CDC and

Harvard Pilgrim Health Care entitled, ‘‘National Bioterrorism

Syndromic Surveillance Demonstration Program,’’ which gathered

symptom data from nurse call-in lines, and physician visits using

patient zip codes to look for patterns of symptoms. Conducting surveillance through health plans is thought to be quicker than tracking emergency room visits since patients may call nurse help lines

when symptoms first appear, before seeking emergency care.19

Another effort, BioWatch, is a mutli-agency program with the

Department of Energy [DOE], the Environmental Protection Agency [EPA], and the Department of Health and Human Services. The

program includes air filter sampling to look for bio-agents in certain cities. The filters are tested for six agents. The program is an

extension of EPA air quality testing. Since 2003, 30 cities have

been included in the program. There are 27 Laboratory Response

Network [LRN] BioWatch labs that test filters for bio-agents.20 In

late September 2005, the Bio Watch filters detected Francisella

tularensis (tularemia) in the Capitol region. Health officials were

not notified until 6 days after tularemia was detected. Thankfully,

the incubation period for tularemia passed without any incident of

human or animal illness. Besides concerns regarding a lag time in

notification, detection systems are futher impeded by the lack of

validation and standardization of detection thresholds. The subcommittee held a hearing in April 2005 looking into the agancies’

activities to detect anthrax contamination in the U.S. Postal Service facilities after the 2001 anthrax incident and found the process

had not been validated. Without validation, one cannot guarantee

the results are accurate.21

7

22 CDC Information Council Meeting Minutes, Feb. 27, 2003, Online at: [http://www.cdc.gov/

cic/minutes/CIC%20minutes%202–27–03.pdf] (accessed Mar. 23, 2006). 23 CDC MMWR ‘‘BioSense: Implementation of a National Early Event Detection and Situational Awareness System,’’ Aug. 26, 2005. Online at: [http://www.cdc.gov/mmwr/preview/

mmwrhtml/su5401a4.htm] (assessed Mar. 23, 2006). 24 CDC Web site article on Enhanced Surveillance Project [ESP] Online at: [http://

www.bt.cdc.gov/episurv/esp.asp] (assessed Mar. 23, 2006). 25 CDC Health Alert Network, Online at: [http://www.bt.cdc.gov/documentsapp/han/han.asp]

(accessed Mar. 23, 2006). 26 CDC Web site article on National Electronic Telecommunications System for Surveillance

[NETSS]. Online at: [http://www.cdc.gov/epo/dphsi/netss.htm] (accessed Mar. 23, 2006). 27The New York Times, ‘‘Threats and Responses: The Bioterror Threat,’’ Jan. 27, 2003, p. 3. 28 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 58.

Data from yet another CDC program, called BioSense, can be

used to match data from BioWatch to compare indicators.22

BioSense is a syndromic surveillance system that takes data from

the Department of Defense Military Treatment Facilities, the Department of Veterans Affairs treatment facilities and Laboratory

Corporation of America (LabCorp) test orders. Data includes the

International Classification of Diseases, Ninth Revision, Clinical

Modification [ICD–9–CM] diagnosis codes along with patient age,

sex, zip code of residents, and facility identifier.23

The Enhanced Surveillance Project [ESP] is another CDC program that can be used during special events to monitor sentinel

hospital emergency department visit data to establish syndrome

baseline and threshold data. ESP has been used at the World

Trade Organization Ministerial in Seattle and the Republican and

Democratic National Conventions.24

The Health Alert Network [HAN] is a nationwide program to establish communication, information and distance learning. The

HAN will link local health departments to one another and to laboratories, CDC, and community first responders. Early warning

systems such as broadcast faxes can be used to alert local, state,

and Federal authorities.25

The National Electronic Telecommunications System for Surveillance [NETSS] is a computerized public health surveillance information system that provides the CDC with weekly data regarding

cases of nationally notifiable disease. The list of mandatory

notifiable diseases changes overtime and varies by state. The Council of State and Territorial Epidemiologists [CSTE] determines the

list of infectious diseases, conditions, and toxic exposure under nationwide surveillance in consultation with CDC.26

The CDC has also provided funding for bioterrorism surveillance

and epidemiology coordination to all state health departments, and

some major metropolitan cities and territories. Several cities and

states have implemented their own syndromic surveillance systems

including California, New Mexico, Texas, Boston, New York City,

and Pittsburgh.27 Pittsburg uses a syndromic surveillance system

entitled Real-time Outbreak and Disease Surveillance [RODS].

RODS collects data from hospitals including patients’ chief complaints, and classifies them according to syndrome in order to look

for potential disease outbreaks.28

The National Retail Data Monitor [NDMR] is a syndromic surveillance system developed by the University of Pittsburgh in collaboration with the CDC. NDMR is used by state public health officials to monitor sales data of over the counter medications from

8

29 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 57. See also

Emerging Infectious Diseases, ‘‘Medication Sales and Syndromic Surveillance, France,’’ March

2006, p. 416. 30 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 56. 31 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 55. 32 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 54. See also

Emerging Infectious Diseases, ‘‘Web-based Surveillance and Global Salmonella Distribution,

2000–2002,’’ March 2006, p. 381. 33 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 55. 34 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 58. 35 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 56. 36 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 58. 37 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004), p. 55.

19,000 stores and pharmacies that might indicate the onset of a

disease outbreak.29

The Infectious Diseases Society of America Emerging Infections

Network [IDSA–EIN] is a network of more than 900 infectious disease practitioners who provide assistance to CDC and state health

departments during outbreak investigations.30

Several surveillance systems have been established to monitor

the safety of the food supply. The Epidemic Information Exchange

[Epi–X] is a web-based communication system used by CDC to

share information about food health concerns with local and state

and Federal health officials.31 The Electronic Laboratory Exchange

Network [eLEXNET] is a web based program for sharing food safety laboratory data among local, state and Federal agencies.32 The

Foodborne Disease Active Surveillance Network (FoodNet) is a surveillance system used to detect diseases and outbreaks in food.33

PulseNet is a nationwide system of public health laboratories that

provide DNA ‘‘fingerprinting’’ on bacteria that may be foodborne in

order to provide an early warning system for outbreaks of

foodborne disease. DNA patterns are compared through a database

at CDC.34

The National Animal Health Reporting System [NAHRS] collects

data from state veterinarians regarding confirmed clinical disease

in livestock, poultry and marine life. This program is a joint venture between the United States Department of Agriculture [USDA]

the U.S. Animal Health Association, the American Association of

Veterinary Laboratory Diagnostics and several states.35 The National Veterinary Services Laboratories [NVSL] are veterinary laboratories run by the USDA that provide diagnostics for domestic

and foreign animal diseases.36

There are several international disease surveillance systems. The

Global Outbreak Alert and Response Network [GOARN] issues

real-time outbreak alerts worldwide from various sources including

media reports, laboratories, and World Health Organization offices.

The Global Public Health Intelligence Network [GPHIN] is an

internet based system developed in Canada and used by the World

Health Organization. GPHIN searches through media sources for

information on disease outbreaks.37

9

38DOD GEIS Web site article ‘‘About DOD–GEIS.’’ Online at: [http://www.geis.fhp.osd.mil/

aboutGEIS.asp] (assessed Mar. 24, 2006). 39DOD GEIS Web site article ‘‘About DOD–GEIS.’’ Online at: [http://www.geis.fhp.osd.mil/

aboutGEIS.asp] (assessed Mar. 24, 2006). 40 International Classification of Diseases, Ninth Revision, Clinical Modification, Sixth Edition, Online at: [http://www.cdc.gov/nchs/about/otheract/icd9/abticd9.htm] (accessed Mar. 23,

2006). 41 Joe Lombardo and LTC Julie Pavlin MD MPH, ‘‘Bio Surveillance: Utilizing ESSENCE II

in Emergency Response,’’ presented at the 2003 NDMS Conference, Mar. 9, 2003, p. 10–11. 42DOD GEIS Web site articles on ESSENCE: Electronic Surveillance System for the Early

Notification of Community-based Epidemics. Online at: [http://www.geis.fhp.osd.mil/GEIS/

SurveillanceActivities/ESSENCE/ESSENCE.asp] p. 3. (assessed Mar. 24, 2006).

B. DEPARTMENT OF DEFENSE GLOBAL EMERGING INFECTIONS

SURVEILLANCE AND RESPONSE SYSTEM [DOD–GEIS]

The Department of Defense Global Emerging Infections Surveillance and Response System [GEIS] was established in response to

Presidential Decision Directive NSTC–7, June 1996. According to

President Bill Clinton, ‘‘the mission of the DOD would be expanded

to include support of global surveillance, training, research, and response to emerging infectious disease threats.’’ DOD–GEIS is designed to, ‘‘strengthen the prevention of, surveillance of and response to infectious diseases that are a threat to military personnel

and families, reduce medical readiness or present a risk to U.S. national security.’’ 38

DOD–GEIS is managed by a Central Hub office located at the

Walter Reed Army Institute of Research. DOD–GEIS operates

within five Army and Navy overseas medical research laboratories,

and within the infrastructure of the military health system [MHS].

DOD–GEIS works to strengthen laboratory-based surveillance, and

monitors for global emerging infections.39

In response to concerns about bioterrorism, and calls to create an

early warning system, DOD–GEIS created the Electronic Surveillance System for the Early Notification of Community-based

Epidemics called ESSENCE. ESSENCE started receiving Ambulatory Data System [ADS] information from military treatment facilities [MTF] in December 1999 for the National Capital Area [NCA].

Seven syndrome groups were created based on the International

Classification of Diseases, Ninth Revision, Clinical Modification

[ICD–9–CM] codes. ICD–9–CM is the official system of assigning

codes to diagnoses and procedures associated with hospital utilization in the United States.40 These groups include respiratory, gastrointestinal, neurologic, dermatologic-hemorrhagic, dermatologicvesicular (smallpox-like), fever/malaise/sepsis, and coma/sudden

death.41 In September 2001, ESSENCE began receiving information from all MTFs that submit data to the ADA. ESSENCE collects information that is available via secure DOD website.42

Every 8 hours data is downloaded and graphs of syndrome

counts are automatically generated. Based on historical data, a

baseline of normal ranges is created. If syndrome counts exceed

baseline ranges, further investigation will be needed to determine

the cause. Syndromic cases can be sorted by patient home zip code.

There are plans to sort active duty personnel records by work zip

code since geographic identification is useful in determining the

10

43DOD GEIS Web site articles on ESSENCE: Electronic Surveillance System for the Early

Notification of Community-based Epidemics. Online at: [http://www.geis.fhp.osd.mil/GEIS/

SurveillanceActivities/ESSENCE/ESSENCE.asp] p. 2. (accessed Mar. 24, 2006). 44 Joe Lombardo and LTC Julie Pavlin MD MPH, ‘‘Bio Surveillance: Utilizing ESSENCE II

in Emergency Response,’’ presented at the 2003 NDMS Conference, Mar. 9, 2003, p. 19. 45DOD GEIS Web site articles on ESSENCE: Electronic Surveillance System for the Early

Notification of Community-based Epidemics. Online at: [http://www.geis.fhp.osd.mil/GEIS/

SurveillanceActivities/ESSENCE/ESSENCE.asp] p. 3. (accessed Mar. 24, 2006). 46DOD GEIS Web site articles on ESSENCE: Electronic Surveillance System for the Early

Notification of Community-based Epidemics. Online at: [http://www.geis.fhp.osd.mil/GEIS/

SurveillanceActivities/ESSENCE/ESSENCE.asp] p. 3. (accessed Mar. 24, 2006). 47DOD GEIS Web site articles on ESSENCE: Electronic Surveillance System for the Early

Notification of Community-based Epidemics. Online at: [http://www.geis.fhp.osd.mil/GEIS/

SurveillanceActivities/ESSENCE/ESSENCE.asp] p. 2. (accessed Mar. 24, 2006). 48The Washington Post, ‘‘Unprepared For a Plague’’ (Apr. 18, 2003), p. 1. 49 National Association of County & City Health Officials [NACCHO] statement entitled,

‘‘Strengthening Local Public Health Readiness.’’ See committee Files.

source of an outbreak.43 ESSENCE has already detected outbreaks

domestic and worldwide. Most of the detected outbreaks were in

the gastrointestinal or respiratory category.44

In fiscal year 2001, Walter Reed Army Institute of Research

[WRAIR] DOD–GEIS entered into a Cooperative Research and Development Agreement with the John Hopkins University Applied

Physics Laboratory for development of nontraditional sources of

data for disease outbreak detection and management. This agreement led to ESSENCE II, a project that was awarded a Defense

Advanced Research Projects Agency [DARPA] grant for $12 million

over a 4 year period.45

Essence II is a syndromic surveillance system that collects nontraditional data sources from military and civilian outpatient visits,

over the counter drug sales, school absenteeism, and animal health

data in Washington DC, Maryland and Virginia. ESSENCE II also

collects data on emergency room activity, requests for lab tests,

confirmed lab results, 911 calls, and ems services. The ESSENCE

II system is only accessible by secure web site to health departments participating in the program. Maryland, the District of Columbia Health Department, and the Virginia Health Department

are members of ESSENCE.46

Syndromic based systems such as ESSENCE have several limitations. There is a lag time in data acquisition. Currently, data is received within 1 to 3 days of a patient visit. However some believe

this is not timely enough should an outbreak occur.47 An astute clinician may call attention to an illness of concern faster than a

syndromic surveillance system. In the case of the anthrax incidents

in 2001, it was a Florida clinician who determined it to be anthrax.48 However, others argue while a syndromic surveillance system may not be useful to catch a small number cases, it will be

helpful in recognizing larger incidents of bioterrorism.

There is also debate within the public health community as to

whether syndromic surveillance systems are worth the financial

and manpower costs. Surveillance systems may place an increased

burden on public health personnel since they will be responsible for

checking out and responding to alerts from surveillance systems.

Thus, it is necessary to ensure sufficient staff will be available to

monitor and provide consequence management for surveillance systems.49 Syndromic surveillance systems are still relatively new and

concerns about false positives may limit their sensitivity and timeliness for detecting events. An astute clinician may call attention

11

50 U.S. General Accounting Office, Pub. No. GAO–03–373, Bioterrorism: Preparedness Varied

Across State and Local Jurisdictions (April 2003), p. 17. 51 U.S. General Accounting Office, Pub. No. GAO–03–373, Bioterrorism: Preparedness Varied

Across State and Local Jurisdictions (April 7, 2003), p. 18. 52 U.S. Government Accountability Office, Pub. No. GAO–04–877, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts (September 2004) p. 1.

to an illness of concern faster than a syndromic surveillance system. In the case of the anthrax incidents in 2001, it was a Florida

clinician who determined it to be anthrax.

C. GOVERNMENT ACCOUNTABILITY OFFICE [GAO] REPORTS

There are various challenges to improving health data collection

and reporting. The threat of bioterrorism has placed additional burden on public health departments to develop surveillance capacity

and to have staff available to provide timely analysis and response.

A GAO report entitled, Bioterrorism: Preparedness Varied across

State and Local Jurisdictions found shortages in personnel in state

and local public health departments, laboratories and hospitals.

Some states and cities were concerned they did not have enough

epidemiologists to do the appropriate investigations in an emergency.50

GAO found local officials felt their surveillance systems were inadequate to detect a bioterrorist event. Some of the cities used a

passive surveillance system. A passive surveillance system is not

timely, and is therefore inadequate for identifying diseases early.

There is also chronic underreporting and a time lag between diagnosing a condition and the health department’s receipt of the report. Many local health departments were lacking the resources

needed to sustain an active surveillance system. According to GAO,

‘‘To improve disease surveillance, six of the states and two of the

cities we visited were developing electronic surveillance systems.’’ 51

Another GAO report entitled, Emerging Infectious Diseases: Review of State and Federal Disease Surveillance Efforts found ‘‘state

public health departments and CDC are implementing an initiative

designed to make electronic disease reporting more timely, accurate

and complete. However, the implementation of this initiative is incomplete.’’ 52

II. DISCUSSION

A. FINDING

1. Disease surveillance systems are fragmented and have been slow

to adapt to new technologies which could improve the timeliness

of outbreak reporting

At a subcommittee hearing, Dr. Seth Foldy, Commissioner of

Health, Milwaukee, WI testified:

The Nation’s traditional approach to disease surveillance

has been slow and cumbersome. States establish lists of reportable diseases. Physicians and laboratories confirm the

diagnosis of a reportable disease and record the information manually on paper. The paper is sent to the local or

state health department, which processes it and determines whether it needs to be sent elsewhere and whether

action needs to be taken. Often the paper forms are missVerDate 11-MAY-2000 11:44 Apr 26, 2006 Jkt 000000 PO 00000 Frm 00017 Fmt 6659 Sfmt 6602 D:\DOCS\26929.TXT HGOVREF1 PsN: HGOVREF1
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53 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, pps. 79–80. 54 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 80. 55 Institute of Medicine, Microbial Threats To Health: Emergence, Detection, and Response,

2003, p. 10. 56 Institute of Medicine, Microbial Threats To Health: Emergence, Detection, and Response,

2003, p. 11. 57 Institute of Medicine, Microbial Threats To Health: Emergence, Detection, and Response,

2003, p. 11. 58 Institute of Medicine, Microbial Threats To Health: Emergence, Detection, and Response,

2003, p. 10.

ing crucial pieces of information, such as the address or

phone number of the patient‘‘ It can take a long time before these pieces of paper add up to the identification of a

disease outbreak. Valuable time for preventing the spread

of the disease is lost.53

Dr. Foldy further stated:

Traditionally legally mandated disease reporting that is

based on the definitive diagnosis of illness and relies on

clinicians making the effort to notify public health authorities may be too slow and unreliable for some of today’s

challenges. It has been estimated that each hour delay in

the recognition of an airborne anthrax might cost hundreds of millions of dollars due to missed opportunities to

limit exposures and offer prophylactic treatment. Moreover, the traditional model will not detect emerging communicable diseases that too new for mandated reporting

regulations.54

The Institute of Medicine [IOM] report entitled, Microbial

Threats To Health: Emergence, Detection, and Response observed:

The ability to gather and analyze information quickly and

accurately would improve the Nation’s ability to recognize

natural disease outbreaks, track emerging infections, identify intentional biological attacks, and monitor disease

trends. Surveillance systems within the United States,

however, remain fragmented and have not evolved at the

same rate as the electronic technological advances that

could significantly improve the timelines and integration of

data collection.55

The IOM recommended, ‘‘Research on innovative systems of surveillance that capitalize on advances in information technology

should be supported.’’ 56 However IOM stated, ‘‘Before widespread

implementation, these systems should be carefully evaluated for

their usefulness in detection of infectious disease epidemics, including their potential for detection of the major biothreat agents, their

ability to monitor the spread of epidemics and their cost effectiveness.’’ 57

The IOM report further stated, ‘‘CDC should take the necessary

actions to enhance infectious disease reporting by medical health

care and veterinary health care providers.’’ 58

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59 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 53. 60 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 54. 61 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 128. 62 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 68. 63 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 55.

The difficulties posed by the wide variance in capabilities and the

lack of computerized systems in the health community were noted

in Dr. Fleming’s statement, ‘‘There are two things. One is the capacity on the clinical side, the clinical laboratory side, to computerize and send their information. So even if a public health department is equipped to receive information, that information can’t be

received if it can’t be sent on the clinical side.’’ 59 When asked by

Congressman Janklow, ‘‘What’s holding that up?’’ Dr. Fleming replied, ‘‘There’s a wide range of systems that are out there, and in

fact some aspects of the health care system still aren’t computerized.’’ 60

Dr. Foldy also noted this lack of computer access in his statement, ‘‘I hasten to remind the committee that, prior to Congress

creating specific health alert network funding that was earmarked

to local health departments, the majority of health departments

had no Internet connections in this country.’’ 61

Marcy C. Selecky, president of the Association of State and Territorial Health Officials also noted local health department weaknesses in her statement, ‘‘In many parts of the country, only the

state Health Department has the sophisticated laboratory and

highly trained laboratorians, epidemiologists and other public

health professionals needed to tackle the most serious public health

challenges.’’ 62

When discussing the current status of disease surveillance Dr.

Fleming stated, ‘‘The system is working. We can make it better. It’s

not broken, but it can be improved.’’ However when Congressman

Janklow asked Dr. Fleming, ‘‘In terms of the world that we live in

where terrorism is directed toward us, are we where we need to

be?’’ Dr. Fleming replied, ‘‘No.’’ 63

Even with the various types of disease surveillance systems currently in place, diseases can still slip through the system.

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64 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 8. 65Dr. Julie A. Pavlin, ‘‘Medical Surveillance for Biological Terrorism Agents,’’ Human and Ecological Risk Assessment, June 2005, p. 534. 66 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 127.

B. RECOMMENDATION

1. The Centers for Disease Control and Prevention should clearly

define the technical parameters and set a specific timeframe for

establishing a unified national disease surveillance system to

replace the current patchwork of reporting and monitoring programs

Given the fragmented state of U.S. disease surveillance, the subcommittee recommends the Centers for Disease Control and Prevention set a clear timeframe for modernizing, improving, and linking disease surveillance systems.

The threat of bioterrorism as well as new emerging diseases such

as SARS makes it imperative local and state public health departments are modernized and disease surveillance is strengthened.

The CDC is responsible for providing ‘‘national and international

leadership in the public health and medical communities to detect,

diagnose, respond to, and prevent illnesses including those that

occur as a result of a deliberate release of biological agents,’’ and

is therefore responsible for setting this timeframe.64

Dr. Julie A. Pavlin, chief, Department of Field Studies, Walter

Reed Army Institute of Research, has noted the basic requirements

for a robust, timely surveillance system,

Any surveillance system for bioterrorism must be dual use

and able to detect diseases of natural occurrence, because

in most cases it will not be readily apparent if a disease

outbreak is natural or manmade. The system must assist

public health officers, and not overly burden them with

false alarms and unreasonable costs. Finally, the surveillance system must augment other public health practices,

and assist in educating clinical colleagues on the importance of maintaining a high index of suspicion and reporting unusual diseases or disease clusters.65

During a subcommittee hearing on Public Health Surveillance,

Congressman Chris Bell noted his concern about the lack of a

timeline for the establishment of a national disease surveillance

system,

I want to go back for just a minute to this idea that was

discussed with the previous panel of trying to create one

unified system for reporting . . . I’m curious as to where

you would rate the importance and if you are as troubled

as I am by the fact that we at the present time don’t know

how much it would cost and really don’t have any time line

for getting there, and the amount of money being committed toward spending on that type of surveillance system is

decreasing rather than increasing.66

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67 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 127. 68 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 135. 69 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 132. 70 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 9.

Ms. Selecky responded

. . . There are multiple plans, they’re private and public,

and having a one system fits all doesn’t cut it in this country very often. That’s why I think that you hear us talking

about common standards so that the information that’s collected can speak and give us the information that we need

to take quick and rapid action.67

There is concern public health officials may be waiting for the

perfect disease surveillance system, instead of using what is available now. Ms. Selecky noted this concern during the subcommittee

hearing, ‘‘When I hear you all talk about and when we talk about

a common system, I get concerned that we are waiting for the perfect system when what we really need to have are the foundations

to be able to use whatever system exists.’’ 68 Ms. Selecky stated,

‘‘We can’t wait for someone to say, here is the perfect system that

is going to be used nationally.’’ 69

The importance of early detection of a disease is apparent in Dr.

Fleming’s statement,

One key successful defense against any threat to the

health of the public, whether naturally occurring or deliberately caused, continues to be accurate, timely recognition

of a problem. Awareness and diagnosis of a condition by a

clinician or laboratory is a key element of our current surveillance system. Clinicians and laboratories report diseases to State and Local health departments which share

information with CDC.70

A nationwide disease surveillance system would help ensure the

timeliness of this recognition.

While the establishment of a nationwide disease surveillance system is essential, the subcommittee also acknowledges a disease

surveillance system is only as good as the public health response

that comes after it to prevent and save lives. Effective disease surveillance will require a commitment of funds not just to Federal

agencies, but also to the state public health departments, who will

be on the frontlines of any disease outbreak, epidemic, or pandemic. Dr. Fleming expresses this clearly in his statement,

the true measure of a system is how responsive it is not

in detecting the event, but in responding to the event and

putting the actions in place that need to be put there to

keep people healthy. And so my definition of the perfect

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71 Homeland Security: Improving Public Health Surveillance, hearing before the Subcommittee

on National Security, Emerging Threats, and International Relations of the Committee on Government Reform, House of Representatives, 108th Cong., 1st sess., May 5, 2003, Serial No. 108–

55, U.S. Government Printing Office, Washington: 2003, p. 51.

system, if you will, is a system that is rapid enough such

that the preventative action that need to be put in place

will happen before individuals become sick or die.71

Monitoring CDC publications and peer review articles since the

testimony at the subcommittee hearing confirms a lack of adequate

progess toward a unified surveillance system. It would be unwise

to expect the individual pieces of disease surveillance to come together on their own and grow into a coherent whole.

(17)

A P P E N D I X E S

APPENDIX I

DISEASE SURVEILLANCE SYSTEMS

BIOSENSE

eLEXNET Electronic Laboratory Exchange Network

ESSENCE Electronic Surveillance System for the Early

Notification of Community-based

Epidemics

Epi–X Epidemic Information Exchange

ESP Enhanced Surveillance Project

FoodNet Foodborne Disease Active Surveillance Network

GEIS Global Emerging Infections Surveillance and

Response System

GOARN Global Outbreak Alert and Response Network

GPHIN Global Public Health Intelligence Network

HAN Health Alert Network

IDSA–EIN Infectious Diseases Society of America

Emerging Infections Network

LRN Laboratory Response Network

NAHRS National Animal Health Reporting System

National Bioterrorism Syndromic Surveillance Demonstration Program

NEDSS National Electronic Disease Surveillance

System

NETSS National Electronic Telecommunications System for Surveillance

NRDM National Retail Data Monitor

NVSL National Veterinary Services Laboratories

PulseNet

RODS Real-time Outbreak and Disease Surveillance

18

APPENDIX II

19

20

21

22

23

APPENDIX III

24

25

26

27

28

29

30

Æ