Emerging Infectious Diseases: National Surveillance System Could Be
Strengthened (Testimony, 02/25/99, GAO/T-HEHS-99-62).
Pursuant to a congressional request, GAO discussed public health
surveillance of emerging infectious diseases, focusing on the role of
laboratories.
GAO noted that: (1) surveillance of and testing for important emerging
infectious diseases are not comprehensive in all states; (2) GAO found
that most states conduct surveillance of five of the six emerging
infections GAO asked about, and state public health laboratories conduct
tests to support state surveillance of four of the six; (3) however,
over half of state laboratories do not conduct tests for surveillance of
penicillin-resistant S. pneumoniae and hepatitis C; (4) also, most state
epidemiologists believe their surveillance programs do not sufficiently
study antibiotic-resistant and other diseases they consider important;
(5) many state laboratory directors and epidemiologists reported that
inadequate staffing and information-sharing problems hinder their
ability to generate and use laboratory data in their surveillance; (6)
however, public health officials have not agreed on a consensus
definition of the minimum capabilities that state and local health
departments need to conduct infectious diseases surveillance; (7) this
lack of consensus makes it difficult for policymakers to assess the
adequacy of existing resources or to evaluate where investments are
needed most; (8) most state officials said the Centers for Disease
Control and Prevention's (CDC) testing and consulting services,
training, and grant funding support are critical to their efforts to
detect and respond to emerging infections; (9) however, both laboratory
directors and epidemiologists were frustrated by the lack of integrated
systems within CDC and the lack of integrated systems linking them with
other public and private surveillance partners; and (10) CDC's continued
commitment to integrating its own data systems and to helping states and
localities build integrated electronic data and communication systems
could give state and local public health agencies vital assistance in
carrying out their infectious diseases surveillance and reporting
responsibilities.
--------------------------- Indexing Terms -----------------------------
REPORTNUM: T-HEHS-99-62
TITLE: Emerging Infectious Diseases: National Surveillance System
Could Be Strengthened
DATE: 02/25/99
SUBJECT: Infectious diseases
Disease detection or diagnosis
Public health research
Laboratories
Medical information systems
Health research programs
Testing
Health care personnel
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Cover
================================================================ COVER
Before the Subcommittee on Public Health, Committee on Health,
Education, Labor and Pensions, U.S. Senate
For Release on Delivery
Expected at 9:30 a.m.
Thursday, February 25, 1999
EMERGING INFECTIOUS DISEASES -
NATIONAL SURVEILLANCE SYSTEM COULD
BE STRENGTHENED
Statement of Bernice Steinhardt, Director
Health Services Quality and Public Health Issues
Health, Education, and Human Services Division
GAO/T-HEHS-99-62
GAO/HEHS-99-62T
(101800)
Abbreviations
=============================================================== ABBREV
AIDS - Test
CDC - Test
CSTE - Test
DNA - Test
INPHO - Test
NCID - Test
PFGE - Test
EMERGING INFECTIOUS DISEASES:
NATIONAL SURVEILLANCE SYSTEM COULD
BE STRENGTHENED
============================================================ Chapter 0
Mr. Chairman and Members of the Subcommittee:
We are pleased to be here today to discuss our report on public
health surveillance of emerging infectious diseases, which you are
releasing today.\1 As you know, the spread of infectious diseases,
once a problem thought to be largely under control, remains a serious
public health threat. While some diseases are controlled through the
use of antibiotics, new ones, such as AIDS, are constantly emerging
and others, such as tuberculosis, re-emerge in drug-resistant forms.
Surveillance--the monitoring of infections to identify them and their
source--is essential to public health efforts to control or prevent
the spread of infectious diseases. Recently, many experts have
voiced concerns about the adequacy of our nation's surveillance,
particularly for antibiotic-resistant diseases.
In light of these concerns, we examined the nation's surveillance
system, with a focus on the role of laboratories. New technology
makes laboratories increasingly important in identifying pathogens,
patterns of antibiotic resistance, and sources of outbreaks. In my
remarks today, I will describe the nation's surveillance
network--which includes public health agencies, private health care
providers, and laboratories--and the extent to which states conduct
surveillance and laboratory testing of six emerging infections.\2 I
will also discuss the problems state public health officials face in
gathering and using laboratory-related data in surveillance and the
views of state officials on the assistance that the Centers for
Disease Control and Prevention (CDC) provides for surveillance. For
two of the six infections we studied--Streptococcus pneumoniae and
tuberculosis--antibiotic-resistance is a concern. My statements
today are based on data we gathered through nationwide surveys of
state public health laboratory directors and epidemiologists\3 and
from information provided by health officials and experts in 30
states and at CDC.\4
In brief, we found that surveillance of and testing for important
emerging infectious diseases are not comprehensive in all states. We
found that most states conduct surveillance of five of the six
emerging infections we asked about, and state public health
laboratories conduct tests to support state surveillance of four of
the six. However, over half of state laboratories do not conduct
tests for surveillance of penicillin-resistant S. pneumoniae and
hepatitis C. Also, most state epidemiologists believe their
surveillance programs do not sufficiently study antibiotic-resistant
and other diseases they consider important.
Many state laboratory directors and epidemiologists reported that
inadequate staffing and information-sharing problems hinder their
ability to generate and use laboratory data in their surveillance.
However, public health officials have not agreed on a consensus
definition of the minimum capabilities that state and local health
departments need to conduct infectious diseases surveillance. This
lack of consensus makes it difficult for policymakers to assess the
adequacy of existing resources or to evaluate where investments are
needed most. Accordingly, our report recommends that the Director of
CDC lead an effort to help federal, state, and local public health
officials create consensus on the core capacities needed at each
level of government.
Most state officials said CDC's testing and consulting services,
training, and grant funding support are critical to their efforts to
detect and respond to emerging infections. However, both laboratory
directors and epidemiologists were frustrated by the lack of
integrated information systems within CDC and the lack of integrated
systems linking them with other public and private surveillance
partners. CDC's continued commitment to integrating its own data
systems and to helping states and localities build integrated
electronic data and communication systems could give state and local
public health agencies vital assistance in carrying out their
infectious diseases surveillance and reporting responsibilities.
--------------------
\1 Emerging Infectious Diseases: Consensus on Needed Laboratory
Capacity Could Strengthen Surveillance (GAO/HEHS-99-26, Feb. 5,
1999).
\2 The six diseases or pathogens we studied are tuberculosis,
virulent strains of E. coli that produce Shiga-like toxin and
include E. coli O157:H7, pertussis (whooping cough), Cryptosporidium
parvum, hepatitis C virus, and penicillin-resistant Streptococcus
pneumoniae.
\3 Epidemiologists study the causes and distribution of disease or
injury in a population.
\4 Our surveys included programs in all 50 states, 5 territories, the
District of Columbia, and New York City. Throughout this statement,
we refer to this group collectively as "states." We received
responses from all 57 laboratory directors and from 55
epidemiologists, for response rates of 100 percent and 97 percent,
respectively.
BACKGROUND
---------------------------------------------------------- Chapter 0:1
Emerging infectious diseases pose a growing health threat to people
everywhere. Some emerging infections result from deforestation,
increased development, and other environmental changes that bring
people into contact with animals or insects that harbor diseases only
rarely encountered before. However, others are familiar diseases
that have developed resistance to the antibiotics that brought them
under control just a generation ago.
Infectious diseases account for considerable health care costs and
lost productivity. In this country, about one-fourth of all doctor
visits involve infectious diseases. The number of pathogens
resistant to one or more previously effective antibiotics is
increasing rapidly, reducing treatment options and adding to health
care costs.
SURVEILLANCE IS THE PRIMARY
PUBLIC HEALTH TOOL TO DETECT
AND MONITOR INFECTIONS
-------------------------------------------------------- Chapter 0:1.1
Surveillance is public health officials' most important tool for
detecting and monitoring both existing and emerging infections.
Without adequate surveillance, local, state, and federal officials
cannot know the true scope of existing health problems and may not
recognize new diseases until many people have been affected. Health
officials also use surveillance data to allocate their staff and
dollar resources and to monitor and evaluate the effectiveness of
prevention and control programs.
The states have principal responsibility for protecting the public's
health and, therefore, take the lead role in surveillance efforts.
Each state decides for itself which diseases physicians, hospitals,
and others should report to its health department and which
information it will then pass on to CDC. Most state surveillance
programs include infections from the list of "nationally notifiable"
diseases, which the Council of State and Territorial Epidemiologists
(CSTE), in consultation with CDC, reviews annually. Nationally
notifiable diseases are ones that are important enough for the nation
as a whole to routinely report to CDC. However, states are under no
obligation to include nationally notifiable diseases in their own
surveillance programs, and state reporting to CDC is voluntary.
The methods for detecting emerging infections are the same as those
used to monitor infectious diseases generally. These methods can be
characterized as passive or active. Passive surveillance relies on
laboratory and hospital staff, physicians, and other relevant sources
to take the initiative to provide data to the health department,
where officials analyze and interpret the information as it comes in.
Under active surveillance, public health officials contact people
directly to gather data. For example, health department staff could
call clinical laboratories each week to ask if any samples of S.
pneumoniae tested positive for resistance to penicillin. Active
surveillance produces more complete information than passive
surveillance, but it takes more time and costs more.
Infectious diseases surveillance in the United States depends largely
on passive methods of collecting disease reports and laboratory test
results. Consequently, the surveillance network relies on the
participation of health care providers, private laboratories, and
state and local health departments across the nation. Even when
states require reporting of specific diseases, experts acknowledge
that the completeness of reporting varies by disease and type of
provider.
Surveillance usually begins when a person with a reportable disease
seeks care and the physician--in an effort to determine the cause of
the illness--runs a laboratory test, which could be performed in the
physician's office, a hospital, an independent clinical laboratory,
or a public health laboratory. Reports of infectious diseases
generated by such tests are often sent first to local health
departments, where staff check the reports for completeness, contact
health care professionals to obtain missing information or clarify
unclear responses, and forward the reports to state health agencies.
At the state level, state epidemiologists analyze data collected
through the disease reporting network, decide when and how to
supplement passive reporting with active surveillance methods,
conduct outbreak and other disease investigations, and design and
evaluate disease prevention and control efforts. They also transmit
state data to CDC, providing routine reporting on selected diseases.
Many state epidemiologists and laboratory directors provide the
medical community with information obtained through surveillance,
such as rates of disease incidence or prevailing patterns of
antimicrobial resistance.
Federal participation in the infectious diseases surveillance network
focuses on CDC activities--particularly those of the National Center
for Infectious Diseases (NCID), which operates CDC's infectious
diseases laboratories. CDC analyzes the data furnished by states to
(1) monitor national health trends, (2) formulate and implement
prevention strategies, and (3) evaluate state and federal disease
prevention efforts. CDC routinely provides public health officials,
medical personnel, and others information on disease trends and
analyses of outbreaks. CDC also offers an array of scientific and
financial support for state infectious diseases surveillance,
prevention, and control programs.
LABORATORIES PLAY AN
ESSENTIAL ROLE IN
SURVEILLANCE OF EMERGING
INFECTIOUS DISEASES
-------------------------------------------------------- Chapter 0:1.2
Public health and private laboratories are a vital part of the
surveillance network because only laboratory test results can
definitively identify pathogens. In addition, test results are often
an essential complement to a physician's clinical impressions.
According to public health officials, the nation's 158,000
laboratories are consistent sources of passively reported information
for infectious diseases surveillance.\5
Every state has at least one state public health laboratory that
conducts testing for routine surveillance or as part of special
clinical or epidemiologic studies. State public health laboratories
also provide specialized testing for low-incidence, high-risk
diseases, such as tuberculosis and botulism. Testing they provide
during an outbreak contributes greatly to tracing the spread of the
outbreak, identifying the source, and developing appropriate control
measures. Epidemiologists rely on state public health laboratories
to document trends and identify events that may indicate an emerging
problem. Many state laboratories also provide licensing and quality
assurance oversight of commercial laboratories.
State public health laboratories are increasingly using advanced
technology to identify pathogens at the molecular level. These tests
provide information that can enable epidemiologists to tell whether
individual cases of illness are caused by the same strain of
pathogen--information that is not available from clinical records or
other epidemiologic methods. Public health officials have used
advanced molecular technology to trace the movement of diseases in
ways that would not have been possible 5 years ago. For example, DNA
fingerprints developed by laboratories in a CDC-sponsored network
showed that drug-resistant strains of tuberculosis first found in New
York City have spread to other parts of the country. The
fingerprints also showed that tuberculosis can be transmitted during
brief contact among people--an important discovery that improved
treatment and control programs.
CDC laboratories provide highly specialized tests not always
available in state public health or commercial laboratories and
assist states with testing during outbreaks. Specifically, CDC
laboratories help diagnose life-threatening, unusual, or exotic
infectious diseases; confirm public or private laboratory test
results that are difficult to interpret; and conduct research to
improve diagnostic methods.
--------------------
\5 U.S. laboratories include about 90,000 laboratories in
physicians' offices; 5,800 independent clinical laboratories; 9,000
hospital laboratories; and 53,000 other laboratories, such as those
in state and local health departments, nursing homes, and other
health care facilities.
NOT ALL STATES CONDUCT
SURVEILLANCE AND TESTING FOR
IMPORTANT EMERGING INFECTIONS
---------------------------------------------------------- Chapter 0:2
While state surveillance and laboratory testing programs are
extensive, not all include every significant emerging infection,
leaving gaps in the nation's surveillance network. Our surveys found
that almost all states conducted surveillance of tuberculosis,
pertussis, hepatitis C, and virulent strains of E. coli; slightly
fewer collected information on cryptosporidiosis. About two-thirds
collected information on penicillin-resistant S. pneumoniae.
Similarly, state public health laboratories commonly performed tests
to support state surveillance of tuberculosis, pertussis,
cryptosporidiosis, and virulent strains of E. coli. However, over
half of the laboratories did not test for hepatitis C, and about
two-thirds did not test for penicillin-resistant S. pneumoniae.
Over three-quarters of the responding epidemiologists told us that
their surveillance programs either leave out or do not focus
sufficient attention on important infectious diseases.
Antibiotic-resistant diseases, including penicillin-resistant S.
pneumoniae and hepatitis C, were among the diseases they cited most
often as deserving greater attention.\6
Moreover, our surveys found that about half of the state laboratories
used a molecular technology called pulsed field gel electrophoreses
(PFGE) to support state surveillance of the diseases we asked about.
State and CDC officials believe that most, and possibly all, states
should have PFGE because it can be used to study many diseases and
greatly improves the ability to detect outbreaks.
--------------------
\6 One state epidemiologist reported taking steps to add hepatitis C
and penicillin-resistant S. pneumoniae to the state's list of
reportable diseases. Another state epidemiologist reported adding
hepatitis C to the list of reportable diseases, and a third reported
adding penicillin-resistant S. pneumoniae.
OFFICIALS REPORT THAT STAFFING
CONSTRAINTS AND WEAK
INFORMATION SHARING IMPEDE
SURVEILLANCE OF EMERGING
INFECTIONS
---------------------------------------------------------- Chapter 0:3
As part of our surveys and field interviews, we asked state officials
to identify the problems they considered most important in conducting
surveillance of emerging infectious diseases. The problems they
cited fell principally into two categories: staffing and information
sharing.
State epidemiologists and laboratory directors told us that staffing
constraints prevent them from undertaking surveillance and testing
for diseases they consider important. Furthermore, laboratory
officials noted that advances in scientific knowledge and the
proliferation of molecular testing methods have created a need for
training to update the skills of current staff. They reported that
such training was often either unavailable or inaccessible because of
funding or administrative constraints.
We found considerable variability among states in laboratory and
epidemiology staffing. During fiscal year 1997, states devoted a
median of 8 staff years per 1 million population to laboratory
testing of infectious diseases, with individual states reporting from
1.3 to 89 staff per 1 million population. The variation in
epidemiology staffing was even greater, ranging from 2.1 to 321 in
individual states, with a median 14 staff years per 1 million
population.
LACK OF EQUIPMENT AND
CUMBERSOME SYSTEMS HINDER
INFORMATION SHARING
-------------------------------------------------------- Chapter 0:3.1
Epidemiologists and laboratory officials alike said that public
health departments often lack either basic equipment, such as
computers and fax machines, or integrated data systems that would
allow them to rapidly share surveillance-related information with
public and private partners. For health crises that need an
immediate response--as when a serious and highly contagious disease
appears in a school or among restaurant staff--rapid sharing of
surveillance information is critical. Officials most often
attributed the lack of computer equipment and integrated data systems
to insufficient funding.
Without such equipment, some tasks that could be automated must be
done by hand. In some cases, the lack of equipment has required data
in electronic form to be reverted to paper form. For example,
representatives from two large, multistate private clinical
laboratories told us that data stored electronically in their
information systems had to be converted to paper so it could be
reported to local health departments.
Our survey responses indicate that state laboratory directors use
electronic communications systems much less often than do state
epidemiologists. Although most laboratory directors use electronic
systems to communicate within their laboratories, they often do not
use them to communicate with others. For example, almost 40 percent
reported rarely using computerized systems to receive
surveillance-related data, and 21 percent used them very little to
transmit such data.
Even with adequate computer equipment, the difficulty of creating
integrated information systems can be formidable. Not only does
technology change rapidly, but computerized public health data are
stored in thousands of isolated locations, including the record and
information systems of public health agencies and health care
institutions, individual case files, and data files of surveys and
surveillance systems. These independent systems have differing
hardware and software structures and considerable variation in how
the data are coded, particularly for laboratory test results.
CDC alone operates over 100 data systems to monitor over 200 health
events, such as diagnoses of specific infectious diseases. Many of
these systems collect data from state surveillance programs. CDC's
patchwork of data systems arose, in part, to meet federal and state
needs for more detailed information for particular diseases than was
usually reported.
Public health officials told us that the multitude of databases and
data systems, software, and reporting mechanisms burdens staff at
state and local health agencies and leads to duplication of effort
when staff must enter the same data into multiple systems that do not
communicate with one another. Further, the lack of integrated data
management systems can hinder laboratory and epidemiologic efforts to
control outbreaks. For example, in 1993, the lack of integrated
systems impeded efforts to control the hantavirus outbreak in the
Southwest. Data were locked into separate databases that could not
be analyzed or merged with others, causing public health
investigators to analyze paper printouts by hand.
PUBLIC HEALTH CONSENSUS ON
CORE CAPACITIES NEEDED TO
CONDUCT SURVEILLANCE DOES
NOT EXIST
-------------------------------------------------------- Chapter 0:3.2
Although many state officials are concerned about their staffing and
technology resources, public health officials have not developed a
consensus definition of the minimum capabilities that state and local
health departments need to conduct infectious diseases surveillance.
For example, according to CDC and state health officials, there are
no standards for the types of tests state public health laboratories
should be able to perform; nor are there widely accepted standards
for the epidemiological capabilities state public health departments
need. Public health officials have identified a number of elements
that might be included in a consensus definition, such as the number
and qualifications of laboratory and epidemiology staff; the
pathogens that each state laboratory should be able to identify and,
where relevant, test for antibiotic resistance; and laboratory and
information-sharing technology each state should have.
CSTE, the Association of Public Health Laboratories, and CDC have
begun collaborating to define the staff and equipment components of a
national surveillance system for infectious diseases and other
conditions. They plan to develop agreements about the laboratory and
epidemiology resources needed to conduct surveillance, diseases that
should be under surveillance, and the information systems needed to
share surveillance data. According to state and federal officials,
this consensus would give state and local health agencies the basis
for setting priorities for their surveillance efforts and determining
the resources needed to implement them.
CDC SERVICES ARE WIDE-RANGING
AND GENERALLY PERCEIVED AS
VALUABLE
---------------------------------------------------------- Chapter 0:4
CDC provides state and local health departments with a wide range of
technical, financial, and staff resources. Many state laboratory
directors and epidemiologists said such assistance has been essential
to their ability to conduct infectious diseases surveillance and to
take advantage of new laboratory technology; however, a small number
of laboratory directors and epidemiologists believe CDC's assistance
has not significantly increased their ability to conduct surveillance
of emerging infections. Yet many state officials indicated that
improvements are needed, particularly in the area of
information-sharing systems.
LABORATORY TESTING,
CONSULTATION, AND TRAINING
ASSISTANCE ARE VIEWED AS
CRITICAL
-------------------------------------------------------- Chapter 0:4.1
Many state laboratory directors and epidemiologists told us that
CDC's testing, consultation, and training services are critical to
their surveillance efforts. More than half of those responding to
our surveys indicated that these three services greatly or
significantly improved their state's ability to conduct surveillance.
State officials indicated that CDC's testing for rare pathogens and
the ability to consult with experienced CDC staff are important,
particularly for investigating cases of unusual diseases, and that
CDC's training was even more significant for improving their ability
to conduct surveillance of emerging infections.
Over 70 percent of epidemiologists responding to our survey said that
when they need assistance, knowledgeable staff at CDC are easy to
locate, but many noted that help with matters involving more than one
CDC unit is difficult to obtain. Many state officials said that this
problem arose when staff in different units did not communicate well
with one another. One official described CDC's units as separate
towers that do not interact. State officials and survey respondents
also said they would like CDC to provide more timely test results in
non-urgent situations and additional training in new laboratory
techniques.
MOST RESPONDENTS SEE
SUBSTANTIAL VALUE IN GRANT
ASSISTANCE PROGRAMS
-------------------------------------------------------- Chapter 0:4.2
Most survey respondents said that NCID's disease-specific grants and
epidemiology and laboratory capacity grants had made great or
significant improvements in their ability to conduct surveillance of
emerging infectious diseases. For example, after state laboratories
began receiving funds from CDC's tuberculosis grant program--which go
to programs in all states and selected localities--they markedly
improved their ability to rapidly identify the disease and indicate
which, if any, antibiotics could be used effectively in treatment.
State laboratory officials attributed this improvement to the funding
and training they received from CDC.
In contrast, only eight states receive CDC funding for active
surveillance and testing for penicillin-resistant S. pneumoniae.
Where almost all states and most state laboratories reported that
they monitor antibiotic-resistance in tuberculosis, far fewer
reported monitoring penicillin-resistant S. pneumoniae. Moreover,
while all but one state require health care providers to submit
tuberculosis reports, fewer than half require reporting of
penicillin-resistant S. pneumoniae.
INFORMATION-SHARING SYSTEMS
NEED IMPROVEMENT
-------------------------------------------------------- Chapter 0:4.3
Over the past two decades, CDC has developed and made available to
states several general and disease-specific information management
and reporting programs. State and federal officials we spoke with
said CDC's systems have limited flexibility for adapting to state
program needs--one reason states have developed their own information
management systems. Officials told us that two systems used by most
laboratory directors and epidemiologists often cannot share data with
each other or with other CDC- or state-developed systems. CDC
officials responsible for these programs said that the most recent
versions can share data more readily with other systems, but the lack
of training in how to use the programs and high staff turnover at
state agencies may limit the number of state staff able to use the
full range of program capabilities.
Many state officials complained about a substantial drain on scarce
staff time to enter and reconcile data into multiple systems, such as
their own system plus one or more CDC-developed systems. The
inability to share data between systems also hinders identifying
multiple records on one case and undermines efforts to improve
reporting by providers.
In response to state and local requests for greater integration of
systems, CDC established a board to formulate and enact policy for
integrating public health information and surveillance systems. The
board brings together federal and state public health officials to
focus on issues such as data standards and security, assessing
hardware and software used by states, and identifying gaps in CDC
databases.
CDC and the states have made progress in developing more efficient
information-sharing systems through one of CDC's grant programs: the
Information Network for Public Health Officials (INPHO). INPHO is
designed to foster communication between public and private partners,
make information more accessible, and allow for rapid and secure
exchange of data. By 1997, 14 states had begun INPHO projects. Some
had combined these funds with other CDC grant moneys to build
statewide networks linking state and local health departments and, in
some cases, private laboratories. Integrated systems can
dramatically improve communication. For example, in Washington,
electronic information sharing systems reduced passive reporting time
from 35 days to 1 day and gave local authorities access to health
data for analysis.\7
--------------------
\7 J. Davies and D. B. Jernigan, "Development and Evaluation of
Electronic Laboratory-Based Reporting for Infectious Diseases
Surveillance" (Atlanta, Ga.: International Conference on Emerging
Infectious Diseases, 1998).
-------------------------------------------------------- Chapter 0:4.4
Mr. Chairman, this concludes my prepared statement. I will be happy
to answer any questions you or other members of the Subcommittee may
have.
*** End of document. ***