Public Health
Surveillance
Applied to
Reproductive
Health
Reproductive Health
Epidemiology Series
Module 1
2003
Department of Health and Human Services
PUBLIC HEALTH
SURVEILLANCE APPLIED TO
REPRODUCTIVE HEALTH
REPRODUCTIVE HEALTH
EPIDEMIOLOGY SERIES:
MODULE 1
June 2003
The United States Agency for International Development (USAID) provided funding for this project
through a Participating Agency Service Agreement with CDC (936-3038.01).
REPRODUCTIVE HEALTH EPIDEMIOLOGY
SERIES—MODULE 1
PUBLIC HEALTH
SURVEILLANCE APPLIED TO
REPRODUCTIVE HEALTH
Kathryn M. Curtis, PhD
Divya A. Patel, MPH
Tolu Osisanya, MPH
Technical Editors
Isabella Danel, MD, MS
Joy L. Herndon, MS
Florina Serbanescu, MD
U.S. Department of Health and Human Services
Centers for Disease Control and Prevention
National Center for Chronic Disease Prevention and Health Promotion
Division of Reproductive Health
Atlanta, Georgia, U.S.A.
2003
CONTENTS
Learning Objectives ........................................................................................ 1
Introduction to Public Health Surveillance ...................................................... 3
Definition of Public Health Surveillance ...................................................... 4
Principles of Surveillance ............................................................................. 5
Ethics of Public Health Surveillance ............................................................. 5
Public Health Surveillance Applied to Reproductive Health ............................ 7
Uses of Surveillance Data ................................................................................ 9
Identify the Health Status of a Population.................................................... 9
Monitor Trends in Health Outcomes ......................................................... 11
Evaluate Public Health Action ................................................................... 12
Set Public Health Priorities ........................................................................ 12
Provide the Basis for Epidemiological Research .......................................... 14
Sources of Data for Public Health Surveillance .............................................. 15
Vital Statistics ............................................................................................ 15
Morbidity Data ......................................................................................... 16
Registries ................................................................................................... 18
Surveys of Reproductive-Age Women and Household Surveys ................... 18
Community Identification ......................................................................... 19
Types of Surveillance Systems ........................................................................ 21
Comprehensive Versus Sentinel Reporting ................................................. 21
Population-Based Versus Facility-Based Systems ......................................... 21
Primary Versus Secondary Data ................................................................. 22
Passive Versus Active Surveillance............................................................... 23
Components of the Surveillance Process ........................................................ 25
Setting Goals and Objectives:
Surveillance Based on Health Objectives and Program Indicators ............... 25
Data Collection ......................................................................................... 27
Analysis of Surveillance Data ..................................................................... 27
Interpretation of Surveillance Data ............................................................ 31
Communication of Findings From Surveillance ......................................... 33
Implementing Public Health Action Based on Surveillance Data ................ 34
Evaluation of Surveillance Systems ................................................................ 35
Elements in Evaluation of Surveillance Systems.......................................... 35
Case Studies
I. An Evaluation of a Reproductive Health Surveillance System .................... 37
Background ............................................................................................... 41
Evaluation of Surveillance Systems ............................................................. 42
Family Planning, Abortion, and
Public Health Burden of PID in Azerbaijan ............................................... 42
Evaluation of the Surveillance System for PID ........................................... 43
Case Definition of PID .............................................................................. 46
Action ....................................................................................................... 49
Cost .......................................................................................................... 50
Attributes of the PID Surveillance System in Azerbaijan ............................ 50
Answers ..................................................................................................... 53
II. An Evaluation of the Perinatal Surveillance System of the Host Country ... 61
Learning Objectives ................................................................................... 63
Note to Instructors .................................................................................... 65
Background ............................................................................................... 67
Goals and Objectives of the Perinatal Surveillance System .......................... 68
Describing and Evaluating the Perinatal Surveillance System ...................... 70
Appendices
A. Commonly Used Rates in Reproductive Health Epidemiology ............. 73
B. Reproductive Health Reference Rates and Ratios .................................. 77
C. Updated Guidelines for Evaluating Public Health
Surveillance Systems ............................................................................ 82
References ................................................................................................... 125
PUBLIC HEALTH SURVEILLANCE
APPLIED TO REPRODUCTIVE HEALTH
LEARNING OBJECTIVES
This module is designed for reproductive health professionals who are
interested in conducting and evaluating reproductive health surveil
lance systems and who need a working knowledge of surveillance in
reproductive health.
After studying the material in this module, the student should be
able to:
• Define public health surveillance and its components.
• State the goals of public health surveillance.
• List general principles of public health surveillance.
• List the main uses of surveillance data.
• Describe sources of data that can be used for reproductive health
surveillance.
• Describe methods and systems useful for conducting reproductive
health surveillance.
• Perform basic analysis of surveillance data.
• Discuss the steps in the evaluation of a surveillance system.
• List the various attributes of surveillance systems.
• Describe how surveillance data are linked to public health action.
• Describe how to link health program objectives and indicators to
surveillance.
• Use a surveillance grid to plan a reproductive health surveillance
system.
• List examples of surveillance systems specific to reproductive health.
Reproductive Health Epidemiology Series
Case Study: Increase in Cases of Congenital Syphilis
Baltimore, 1993–1996
B etween 1993 and 1996, surveillance of congenital syphilis (CS)
in the city of Baltimore revealed an increase from 62 to 282
cases per 100,000 live-born infants. Because of this dramatic
increase, public health officials assessed the magnitude of the
syphilis epidemic in pregnant women in Baltimore and tried to
identify ways to increase CS prevention. An assessment of the
surveillance system, along with a review of hospital discharge
records, yielded the following information:
• All cases of CS found through hospital discharge had also
been reported to the CS surveillance system, confirming the
completeness of the surveillance system.
• Among 90 women with active syphilis during pregnancy,
62 (69%) delivered infants with CS; 28 (31%) of the infants
did not have CS.
• Mothers of infants with CS and mothers of infants without CS
had similar demographic characteristics (age, race, marital status).
• Mothers of infants with CS were more likely to have had a
third-trimester diagnosis of syphilis, no prenatal care or prenatal
care initiated late in the third trimester, and missed opportunities
for screening and prenatal care (e.g., spent time in jail or had
contact with a social worker or other social service agency).
In response to these findings, public health officials
• Alerted prenatal care and other health providers to initiate
syphilis screening and treatment programs for women of
reproductive age.
• Initiated a rapid screening and treatment program for detained
and arrested women.
• Worked to amend an existing law on syphilis testing during
pregnancy to require syphilis testing at 28 weeks gestation or
the first visit thereafter to ensure diagnosis in time to prevent
prenatal transmission.
Continued surveillance of CS will allow Baltimore health officials
to evaluate the effects of these interventions.
Adapted from: CDC. Epidemic of congenital syphilis—Baltimore, 1996–1997.
MMWR 1998;47(42):904–7.
2
Module 1: Public Health Surveillance Applied to Reproductive Health
INTRODUCTION TO PUBLIC HEALTH
SURVEILLANCE
Public health surveillance began centuries ago with the close observa
tion of individuals who had been exposed to a communicable disease,
in order to detect early symptoms and implement prompt isolation
and control measures. This process is now referred to as medical or
personal surveillance (1). By comparison, public health surveillance is
a term used today to describe the process of closely observing health
events in populations, with a direct and established link to public
health action. Over the last 40 years the uses and practices of surveil
lance have evolved dramatically—surveillance has come to include
infection control efforts as well as the monitoring of a wide variety
of health events, such as acute and chronic diseases, injuries, environ
mental and occupational hazards, behavioral risk factors, and repro
ductive health. Some examples of questions about diseases or other
health events that surveillance can be used to answer include the
following (2):
• What are currently the most serious health problems? WHO Study of
Essential Public
• What are the emerging health problems?
Health Functions
• Can these problems be prevented? (rank out of 37)
• How effective and costly are various prevention and control 1. Immunization
strategies? 2. Monitoring of
• Which prevention and control strategies should be implemented? morbidity and
mortality
• What impact do alternative prevention and control strategies have
on health outcomes? 3. Disease outbreak
control
• Do prevention and control strategies need to be modified so pro
gram objectives can be met? 4. Disease surveillance
• How should scarce economic, material, and human resources be 5. Promotion of
allocated and targeted in order to achieve health goals? community
involvement
In 1992, the U.S. Centers for Disease Control and Prevention (CDC) in health
convened the International Symposium on Public Health Surveil
lance, during which surveillance was advocated as an essential part of 6. Monitoring
the global health agenda (2). The symposium focused on the use of determinants
surveillance for setting priorities, policy development and program of health
evaluation, effective communication of surveillance information, and
the need for capacity building. Surveillance and monitoring of health Source: Bettcher DW, Sapirie S,
Goon EH. Essential public health
events are also included among the essential public health functions functions: results of the
ranked by the World Health Organization (WHO) (3). international Delphi study.World
Health Stat Q 1994;51:44–54.
3
Reproductive Health Epidemiology Series
Definition of Public Health Surveillance
Public health surveillance is the “ongoing systematic collection,
analysis, interpretation of data (e.g., regarding agent/hazard, risk
factor, exposure, health event) essential to the planning, implementa
tion, and evaluation of public health practice, closely integrated with
the timely dissemination of these data to those responsible for preven
tion and control” (4). This definition highlights the essential features
of surveillance systems, which are the systematic and ongoing collec
tion, analysis, interpretation, and dissemination of data that lead to
action and a link with public health practice.
Surveillance systems depend on networks of people and activities
to maintain the flow of information and may function at a range
of levels, from local to international. Surveillance systems are
often considered information loops or cycles involving health care
providers, public health agencies, and the public (1). Public health
surveillance systems are used to collect descriptive data that identify
characteristics of person, place, and time regarding the particular
health event under surveillance. In contrast to one-time surveys or
epidemiologic studies, surveillance is a process that continues over
time. Sometimes, repeated surveys are used to detect trends in the
data. Importantly, a surveillance system is not complete without
feedback components and a direct link to public health action.
The essential link between public health surveillance data and public
health action is the application of these surveillance data to health
promotion and disease prevention. Individuals and groups who have
the resources to undertake effective prevention and control activities
in response to the information provided by the surveillance system
need to be included in the dissemination and communication of
results from the surveillance system. Health care providers, health
agencies, and the public are all responsible for disease prevention
and control, and therefore should receive feedback of surveillance
information (2). Table 1 illustrates the link between surveillance
and public health action for decision making.
Table 1. The Components of Surveillance and Resulting Public Health Action
Public Health Surveillance Action
Surveillance Public Health Action
Goals & objectives Priority setting
Collection Planning, implementing, evaluating:
Analysis • disease investigation
Interpretation • disease control
Dissemination • disease prevention
Adapted from: Principles of epidemiology: an introduction to applied epidemiology and biostatistics. Atlanta (GA):
Centers for Disease Control and Prevention; 1992. p. 291.
4
Module 1: Public Health Surveillance Applied to Reproductive Health
Principles of Surveillance
An effective surveillance system:
• Addresses health events that are of considerable public health
importance; in other words, health events that cause a substantial
amount of morbidity and/or mortality and are amenable to
practical control or prevention measures.
• Responds to clearly defined objectives.
• Identifies and correctly classifies a large proportion of target
health events.
• Correctly reflects the distribution of events over time, place,
and person.
• Includes the following components: 1) a clear definition of the
health event(s) under surveillance; 2) a clear and logical path for
data flow; 3) an adequate knowledge of the population under
surveillance; and 4) well-defined and appropriate methods for
collection, analysis, interpretation, and feedback of information.
• Results in meaningful and effective public health action based
on the data obtained from the system.
• Consists of a simple, flexible, and responsive architecture.
• Promotes a high level of participation of all those involved in
the system.
• Provides information in a timely manner so as to enhance relevant
public health action.
• Requires justifiable resources to establish and maintain.
An effective surveillance system allows for the integration of epide
miologic, behavioral, laboratory, demographic, and other types of
data to provide the information needed by those who must take
action (2).
Ethics of Public Health Surveillance
As with all public health activities, practitioners must address the
ethical issues associated with surveillance activities. In particular,
issues of privacy, confidentiality, and potential need for informed
consent are important to resolve when designing a surveillance
system. Finally, a surveillance system that only collects data but
does not facilitate the use of that data for public health action can
be considered an unethical system because it wastes valuable public
health resources with no benefit to the public.
5
Reproductive Health Epidemiology Series
In addition to complying with any regulations of the country or
institution that is implementing the surveillance system, the following
questions can be helpful in addressing ethical issues related to surveil
lance systems (5):
1. Can you justify the surveillance system in terms of maximizing
potential public health benefits and minimizing harm to the
public and individuals?
2. Can you justify the use of any identifiers and the maintenance of
records with identifiers?
3. Should you elicit informed consent from potential surveillance
subjects?
4. Can confidentiality of information collected from individuals
be ensured?
5. Have the surveillance protocols been reviewed by colleagues and
outside experts?
6. Do you have a plan for sharing data and findings with colleagues,
clinicians, the public health community, and the general public?
7. Do you have a plan for ensuring that the surveillance findings lead
to action—change practice, target resources and interventions,
monitor trends over time, and stimulate other activities to improve
the public’s health?
6
Module 1: Public Health Surveillance Applied to Reproductive Health
PUBLIC HEALTH SURVEILLANCE APPLIED
TO REPRODUCTIVE HEALTH
Reproductive health surveillance can be defined as “a component
of the health information system that permits the identification,
notification, quantification, and determination of events of reproduc
tive health significance for a defined period of time and specified
geographic location(s), with the goal of orienting appropriate public
health measures for disease prevention and health promotion” (7).
The goal of reproductive health surveillance is to identify or examine WHO Definition of
ongoing patterns of health events so as to effectively investigate and Reproductive Health
control the public health events in question, and to prevent morbidity
and mortality in a population. Surveillance data are used both to The World Health
determine the need for public health action and to assess the effec Organization (WHO)
tiveness of programs. Reproductive health events that can be tracked defines reproductive
through a surveillance system include, but are not limited to: health as a condition in
which the reproductive
• Vital statistics (births and fetal deaths). process is accomplished
in a state of complete
• Deaths and ill health due to pregnancy (maternal mortality and physical, mental, and
morbidity) and other pregnancy-related events. social well-being, and is
• Infant deaths and ill health. not merely the absence
of disease or disorders of
• Sexually transmitted diseases. the reproductive system.
• “Risky” behaviors before or during pregnancy. It involves the interaction
of four main components:
• Contraceptive practices. 1) the ability, particularly
• Unintended pregnancy. of women, to regulate and
control fertility; 2) safe
• Indicators of health services such as prenatal care. motherhood; 3) infant
and child survival, growth,
and development; and
4) safety from sexually
transmitted disease (6).
Module 1: Public Health Surveillance Applied to Reproductive Health
USES OF SURVEILLANCE DATA
Surveillance data are used to monitor health events to
determine the need for public health action and to evaluate
the effectiveness of programs. It is crucial to understand the
uses of surveillance data, their application in decision-making,
and their role in identifying research opportunities. Officials
responsible for the health of the population are dependent
on surveillance data because of the focus on providing
information for public health action and a mechanism to
evaluate control and prevention programs.
Surveillance data can be used for the following:
Identify the Health Status of a Population
• Identify new syndromes and infectious agents. New syndromes
have been identified from the reporting, analysis, and interpre
tation of descriptive surveillance data. For example, researchers
noticed unique clinical presentations and characteristics of the
sentinel cases of acquired immune deficiency syndrome (AIDS)
that suggested a possible connection between these cases. All
the AIDS patients who were seen at the University of California
at Los Angeles (UCLA) Medical Center in 1981 suffered from
the same rare opportunistic infections (8). The UCLA physicians
played a crucial role in detecting the presence of a new disease
in their community by characterizing the unusual pattern of
disease occurrence by person, place, and time.
• Estimate the magnitude of a health problem. Surveillance data
are used to quantify the magnitude of a health problem or the
burden of disease due to a specific cause. These estimates can
be used as baseline figures to prioritize public health problems.
Table 2 shows estimates of maternal mortality globally and
highlights the discrepancies in the magnitude of maternal
mortality between more developed and less developed regions
of the world.
• Determine geographic distribution. By pinpointing geographic
areas of higher prevalence of the health outcome of interest,
prevention and control resources can be more efficiently
9
Reproductive Health Epidemiology Series
Table 2. Estimates of Maternal Mortality
UN Region Maternal Mortality Ratio Number of Lifetime Risk of
(maternal deaths per Maternal Deaths Maternal Death,
100,000 live births) 1 in:*
World ................................................................. 430 585,000 60
†
More developed regions ...................................... 27 4,000 1,800
Less developed regions ....................................... 480 582,000 48
Africa .................................................................. 870 235,000 16
Eastern Africa ................................................ 1,060 97,000 12
Middle Africa ................................................... 950 31,000 14
Northern Africa ................................................ 340 16,000 55
Southern Africa ................................................ 260 3,600 75
Western Africa ............................................... 1,020 87,000 12
Asia† ................................................................... 390 323,000 65
Eastern Asia ........................................................ 95 24,000 410
South-central Asia ............................................ 560 227,000 35
South-eastern Asia ............................................ 440 56,000 55
Western Asia ..................................................... 320 16,000 55
Europe .................................................................. 36 3,200 1,400
Eastern Europe ................................................... 62 2,500 730
Northern Europe ................................................ 11 140 4,000
Southern Europe ................................................ 14 220 4,000
Western Europe .................................................. 17 350 3,200
Latin America and the Caribbean ....................... 190 23,000 130
Caribbean ......................................................... 400 3,200 75
Central America ............................................... 140 4,700 170
South America .................................................. 200 15,000 140
Northern America ................................................ 11 500 3,700
Oceania† ............................................................. 680 1,400 26
Australia–New Zealand ...................................... 10 40 3,600
Melanesia .......................................................... 810 1,400 21
Source: Data from World Health Organization. WHO revised 1990 estimates of maternal mortality: a new approach
by WHO and UNICEF. Geneva, Switzerland: World Health Organization; 1996. p. 1–15.
*Lifetime risk of maternal death reflects the chances of a woman’s dying from maternal causes over her reproductive life
span, usually given as 30–35 years.
†
Australia, New Zealand, and Japan have been excluded from the regional totals, but are included in the total for more
developed regions.
targeted. Geographic patterns may also generate hypotheses
about disease etiology and spread (Figure 1).
• Identify groups at high risk for a health event of interest. This infor
mation is vital for prioritizing health interventions and allocating
resources. For example, the Pregnancy Risk Assessment Monitor
ing System (PRAMS), supported by CDC, compiles data on
maternal and child health indicators of health events that occur
before, during, and after pregnancy among women who deliver a
10
Module 1: Public Health Surveillance Applied to Reproductive Health
live-born infant (9). These data
can be used by policy makers to Figure 1. Population-Based Prevalence of Perinatal
assess the status of public health Exposure to Cocaine—Georgia, 1994
programs in preventing high-risk
pregnancies and adverse preg
nancy outcomes. Another ex
ample comes from CDC’s Preg
nancy-Related Mortality Ratio
(Figure 2). The figure highlights
the increased mortality rates
among older women and among
black women compared with
white women.
Monitor Trends in
Health Outcomes
• Identify changes in the occurrence
and distribution of disease to
guide immediate action for cases Source: CDC. Population-based prevalence of perinatal exposure to
of public health importance. This cocaine—Georgia, 1994. MMWR 1996;45(41):887–91. Mary D.
Brantley, MPH, MT (ASCP) SI, Centers for Disease Control and
is especially important at the
Prevention, written communication, March 2001.
local level, in the event of an
epidemic or an outbreak. For
example, the case study in the
introduction (p. 2) illustrates the Figure 2. Pregnancy-Related Mortality Ratio,*
confirmation of an increase in by Age Group and Race—United States, 1987–1990
cases of congenital syphilis by
175
the assessment of surveillance.
150
• Identify changes in infectious
agents and host factors to assess 125
the potential for future disease 100
Ratio
occurrence, and to anticipate
75
changes in the natural history of
a disease. For example, increases 50
in antibiotic-resistant gonorrhea 25
were detected in the United
0
States in the 1980s. Surveillance <20 20–24 25–29 30–34 35–39 ≥40
enabled public health officials Age Group (Years)
to monitor the spread of this
All Races Black
strain. Surveillance data facili White
tated treatment and prevention
activities, indicating the need *Pregnancy-related deaths per 100,000 live births.
for modifications to local Source: MMWR 1997;46(SS-4):17–36.
11
Reproductive Health Epidemiology Series
guidelines when the proportions
Figure 3. Reported Gonorrhea Rates* and 2000
of gonococcal strains that met
National Health Objective for Gonorrhea, by Year—
criteria for antimicrobial resis
United States, 1970–1998
tance were greater than or equal
to 1% for two consecutive
months (10).
500
• Determine the etiology and
400
Gonorrhea natural history of a disease by
following long-term trends
300 and patterns in populations.
Rate
The identification of changes
200 in long-term trends is useful
information for public health
2000 Objective
100 decision makers who need to
target strategies and anticipate
0 needs.
1970 1974 1978 1982 1986 1990 1994 1998
Year Evaluate Public Health
*Per 100,000 population.
Source: MMWR 2000;49:538–542. Action
• Guide the planning, implemen
tation, and evaluation of
programs to prevent and control disease, injury, or adverse exposure.
National rates of gonorrhea for the United States from 1970
through 1998 (Figure 3) indicate that U.S. gonorrhea rates were
dropping and were on target to meet national objectives for the
year 2000.
• Detect the impact of changes in health care practices and public policy.
Data for several maternal health care indicators over time (Table
3) indicate an improvement in maternal health care practices,
perhaps due to changes in health care policy in Honduras during
this time period.
Set Public Health Priorities
• Allocate public health resources. Hemorrhage is the leading cause
of maternal deaths in Honduras and the proportion of maternal
deaths due to hemorrhage increased between 1990 and 1997
(Figure 4). One strategy for reducing maternal mortality in this
setting would be to provide additional resources to reduce the
deaths caused by hemorrhage; for example, by upgrading hospital
blood transfusion capabilities or by increasing emergency transpor
tation services.
• Project future needs. Surveillance data can be used to project future
needs, for increasing, decreasing, and stabilizing the need for
12
Module 1: Public Health Surveillance Applied to Reproductive Health
Table 3. Maternal Health Indicators: Honduras, 1987–2001
1987 1992 1996 2001
Any prenatal care
in a health facility ................................................................... 65% 73% 83% 85.4%
> 3 PNC visits ........................................................................ — 51% 67% —
Births in a health facility ........................................................ 41% 46% 54% 54%
Cesarean sections .................................................................. 5.6% 6.4% 6.3% 9.6%
Adapted from: Honduras Ministerio de Salud. Encuesta nacionale de epidemiologia y salud familiar 1996. Honduras:
Ministerio de Salud; 1997.
2001 data from: Richard Monteith, Centers for Disease Control and Prevention, written communication, March 2002.
Figure 4. Comparison of Causes of Maternal Death, Honduras, 1990 and 1997
1990 (N = 314) 1997 (N = 192)
Hemorrhage 40% Infec. 15%
Infec. 25%
Hemorrhage 47%
Hypert. 19%
Hypert. 15%
Other/Ind. 15% Obst. lab. 5% Other/Ind. 18% Obst. lab. 1%
Source: Melendez JH, Ochoa Vasquez JC, Villanueva Y. Investigacion sobre mortalidad materna y de mujeres en
edad reproductiva en Honduras. Honduras: Ministerio de Salud; 1999.
resources. For example, infant and fetal deaths due to congenital
syphilis may be decreasing. Although constant vigilance and re
sources are needed to screen and treat pregnant women, the re
sources associated with treating infants with congenital syphilis will
decrease. At the same time, perhaps, infant deaths due to other
causes may still be high, and resources can now be diverted to new
interventions to prevent other causes of infant mortality.
13
Reproductive Health Epidemiology Series
Provide the Basis for Epidemiological Research
• Generate hypotheses and stimulate research. Because surveillance data
describe a current health situation or changes in the health situation
over time, these data can be used to generate hypotheses about the
causes and predictors of disease. For example, one can hypothesize
that the high proportion of maternal deaths in Honduras due to
hemorrhage might be related to health care services for blood
transfusions: women may have difficulty accessing these services
because of lack of emergency transportation, blood may not be
readily available, the time it takes to begin the transfusion may be
too long, and the health care system may have other problems.
From these hypotheses, an analytic study can be designed to iden
tify the specific causes and predictors of maternal deaths due to
hemorrhage, and appropriate interventions can be implemented.
14
Module 1: Public Health Surveillance Applied to Reproductive Health
SOURCES OF DATA FOR PUBLIC
HEALTH SURVEILLANCE
In many instances, analysis of routinely collected data will provide
the basis for assessing the public health impact of a particular health
event. Routinely collected data provide several sources from which
information can be obtained for public health surveillance applied to
reproductive health issues. The selection and appropriate use of data
from these sources depend primarily on the nature and scope of
activities to be monitored.
Vital Statistics
The vital statistics of birth, death, marriage, and divorce are collected
routinely in some countries and are a cornerstone of surveillance in
both developed and developing countries (11). However, medically
certified information on deaths is available only for less than 30% of
the 50.5 million deaths that occur every year (12). Vital statistics are
particularly important since, in many countries, they are the only
form of health-related data available in a standard format and, thus,
can be useful for global comparisons. Uses of vital statistics include
the following:
• Monitoring long-term trends.
• Identifying differences in health status within racial or other popu
lation subgroups.
• Assessing differences by geographic area or by occupation.
• Monitoring illnesses and deaths that are considered preventable.
• Conducting health-planning activities.
• Generating hypotheses regarding etiology or correlates of disease.
• Monitoring progress toward achieving improvements in the health
of the population.
Although the usefulness of vital statistics in surveillance varies by
health event, in general, vital statistics are more useful for conditions
that are easily recognized at the time of birth or death. Mortality rates
derived from vital records will most closely approximate the true
incidence for easily diagnosed conditions with a short clinical course,
and for conditions that are usually fatal.
In the United States, certain states include additional information
on perinatal risk factors on their birth certificates as a way to improve
surveillance for perinatal events. Birth certificate information can be
used, for example, to determine the extent to which women in the
15
Reproductive Health Epidemiology Series
United States received delayed prenatal care or no prenatal care.
Some states link information from infant death certificates with
maternal characteristics such as age, health status, and race for the
surveillance of adverse reproductive health outcomes. Collection of
this additional information in turn supports health planning and
targeting of services (11).
The quality of vital statistics data depends on several factors,
including the completeness of vital registration, the accuracy of
data provided on certificates, and the translation of information
into computerized data. Registered events tend to differ from those
that are not registered. For example, deaths of women in urban areas
or who have received better medical care are more likely to be regis
tered than are deaths among women in rural areas or among those
who have not received medical care (7). Furthermore, delays in the
production of final vital statistics at a national level are common,
even though birth and death certificates are filed shortly after the
event occurs. Death certificates cannot provide accurate information
on the impact of diseases with low case-fatality rates or long latency
periods. Despite these limitations, vital records serve an important
function in providing information for surveillance of a wide range
of health events at local, national, and international levels. Routine
analysis of data obtained at birth and death may point to areas in
need of further investigation.
Morbidity Data
Morbidity data, or data on diseases and other health events, are
obtained from several sources, including notifiable disease reports,
hospital data, outpatient and special clinics data, and laboratory
data. Registries are another valuable source of health data.
Notifiable disease reports. Health care providers are required to report
certain health events occurring within a geopolitical boundary
(county, state, province, etc.). Requirements to report health events
vary from place to place, depending on health priorities and policies.
In general, a disease is designated as notifiable when the link between
case report and public health action is clear (i.e., the report of a case
of the health event under surveillance leads the health authorities
to take certain measures) (13). Sexually transmitted diseases such as
chancroid, gonorrhea, syphilis, HIV infection, and AIDS are required
to be reported by law in many places. In some areas, abortions and
maternal deaths are included in the list of reportable events.
In general, persons obligated to report known or suspected notifiable
conditions include physicians, dentists, nurses, and other health
16
Module 1: Public Health Surveillance Applied to Reproductive Health
professionals, medical examiners, and administrators of hospitals,
clinics, nursing homes, schools, and nurseries. In some cases, labora
tories and the general public are required to report notifiable diseases.
These reports are routinely used by health agencies at all levels for
public health surveillance—local, national, and global.
Hospital data. Many hospitals maintain discharge records for adminis
trative and financial purposes. Local and national surveillance systems
can make use of these data by collecting information from samples of
hospitals for surveillance of a wide range of pregnancy-related events,
including birth defects, infant deaths, unintended pregnancy, and
maternal morbidity and deaths. Pertinent information available
through hospital records may include demographic information,
diagnoses, length of hospital stay, outcome, and other patient
information that can be reported without identifying individuals.
Along with information on burden of disease, this information
may also provide important data on health activities.
A disadvantage of using hospital data is that they are facility-based
and, thus, population-based rates usually cannot be estimated.
Hospital data are most useful for conditions or procedures for
which patients are typically hospitalized, for example, cesarean
sections, but less so for conditions for which many patients are
treated outside a hospital setting, for example, pelvic inflammatory
disease. Another disadvantage is that fee-for-service hospitals or ones
that serve patients with a certain type of insurance may admit mainly
economically advantaged people. Such hospitals may have lower rates
of severe illnesses or deaths than the rest of the community. Hence,
rates derived from hospital data must be interpreted with caution
before they can be generalized to the overall population.
Outpatient and special clinics data. Information from special
outpatient clinics can be especially useful in reproductive health
surveillance of sexually transmitted diseases (STDs) and pregnancy-
related outcomes. Outpatient data also are facility-based and thus
usually cannot be generalized to the population.
Laboratory data. Laboratories can be a useful source of surveillance
data in reproductive health epidemiology, especially for diseases
in which laboratory confirmation is essential for diagnosis (e.g.,
confirmation of HIV infection). Laboratory-based surveillance is an
important component of the prevention and control of reproductive
tract infections (RTIs). The traditional approach to diagnosis and
treatment of RTIs is through laboratory diagnosis to determine the
etiologic agent causing infection. In developed countries, laboratory
17
Reproductive Health Epidemiology Series
tests are used to confirm symptomatic infections, as well as detect
asymptomatic infections, and thus provide data for epidemiological
surveillance and monitoring of disease sensitivity to antibiotic treat
ment (antibiotic resistance).
Registries
A registry serves as a listing of all occurrences of a disease or category
of disease (such as cancer, birth defects, or immunization) within
a defined area (4). Information is collected from multiple sources
(e.g., hospital-discharge data, treatment records, pathology reports,
and death certificates) and is linked for each individual over time
(e.g., the immunization schedule for a particular child over time and
across multiple health care providers). This linkage of individuals over
time is unique to registries. Registries have been used to monitor a
wide range of health events and have identified opportunities for
public health prevention and control activities.
Registries can be facility- or population-based, although population-
based registries from which incidence rates can be calculated are
generally more useful. However, even if population at risk is not
known, facility-based registries can be useful for a variety of activities
including descriptive analyses and assessment of treatment effective
ness. The main limitation of registries is that high-quality data
collection systems are expensive to set up and maintain and, thus,
are generally not available in all geographic areas (11). Also, the
complexity of the data collection process makes rapid turnaround
of data difficult.
Surveys of Reproductive-Age Women and
Household Surveys
Information that can be obtained from surveys includes disease
status, behaviors associated with disease, risk factors, and health
services data. Reproductive health surveys can be either one-time,
cross-sectional surveys, or large-scale, periodic surveys. Population-
based information for non-notifiable diseases is often obtained solely
through the use of surveys of individuals, which can capture cases
that are not seen at a health facility. One-time surveys do not provide
information that can be used for assessing trends; ongoing or periodic
surveys are more useful for surveillance purposes because rates can be
monitored over time in a specific region.
Reproductive health surveys provide high-quality data and are
routinely conducted by developed countries; however, the expense of
conducting such surveys is a serious limitation for developing countries.
18
Module 1: Public Health Surveillance Applied to Reproductive Health
Community Identification
Community identification of health events occurs when persons
sometimes referred to as “key informants” report information from
the community to the health sector (7). Key informants may be
traditional birth attendants, village health workers, village leaders,
or simply well-connected individuals in the community. For ex
ample, maternal deaths that occur in a community may not be
reported to a health facility and therefore would not be counted
in a facility-based surveillance system. Maternal deaths occurring
outside the health system must be identified and investigated be
cause these women often die from different causes than do women
who die in hospitals. The community identification approach is
important for situations in which a significant proportion of health
events do not occur within the health care delivery system and, thus,
are not identified through any of the other surveillance methods
discussed earlier.
In some settings, estimates of reproductive health events cannot
be obtained through direct methods of measurement. The
sisterhood method is an indirect method of community identification
of maternal deaths that makes use of information on maternal
deaths obtained by the addition of questions to demographic or
community-based household surveys (14). This method, in which
a representative sample of adults is asked questions regarding the
survivorship of their sisters, provides basic information for the
calculation of women’s lifetime chances of death from maternal
causes. The sisterhood method requires smaller sample sizes than
traditional methods and is relatively easy to use in the field.
One of the main problems with the sisterhood method is that it
yields no information on the causes or circumstances surrounding
the maternal deaths. Furthermore, the method is highly dependent
on the prevalence of maternal mortality in the population. This
method relies on the idea that siblings maintain contact throughout
their lives. This assumption may not be true in settings where
women leave the maternal home upon marriage and perhaps
migrate to other parts of the country. The sisterhood method
tends to underreport early pregnancy deaths, especially those related
to abortion or those that occur among unmarried women. Moreover,
the sisterhood method can only give a retrospective estimate for the
Maternal Mortality Ratio for the past 10 years (15). Nevertheless,
the sisterhood method is useful for deriving population-based
estimates of maternal mortality in areas where the alternative data
sources and approaches to estimation are inadequate, such as areas
with poorly maintained or nonexistent vital registration systems.
19
Module 1: Public Health Surveillance Applied to Reproductive Health
TYPES OF SURVEILLANCE SYSTEMS
Comprehensive Versus Sentinel Reporting
Comprehensive reporting systems collect information on all cases of a
particular health event under surveillance. Routinely collected data
on patient care are aggregated on a regular basis and reported. Rou
tine patient care data collection usually includes the whole spectrum
of health events seen by the health facility and may include hospital
records, home visits, and outreach efforts by health workers. Other
sources of comprehensive data for a surveillance system are notifiable
disease reports and reproductive health surveys. Since comprehensive
reporting provides a wide range of information to the collecting
agency, careful scrutiny may be required to identify important trends
and changes. Comprehensive reporting systems are commonly used
in developing countries, where resources for data collection targeted
toward particular health events may be extremely limited.
In contrast, sentinel surveillance monitors key health events through
selected sites, geographic areas, events, providers, or vectors (16). In
this system, selected health facilities are designated as sentinel sites and
are required to report the health event under surveillance. Although
sentinel sites may be obtained from a sample, usually they are chosen
because of the likelihood of observing the particular health event at
that site and for their cooperation in reporting. Sentinel surveillance
encompasses a wide range of health activities for the purpose of
obtaining timely information.
In a sentinel system, data typically are reported weekly so that out
breaks and other unusual health events can be detected quickly. Since
fewer sites are involved, data collected from sentinel sites are usually
more accurate and complete, and data collection is less expensive than
in comprehensive surveillance systems. The information obtained from
sentinel systems, however, is usually not representative of the general
population and is often insufficient to calculate rates and ratios.
Population-Based Versus Facility-Based Systems
Population-based is a term used to describe information collected
for all persons in a certain geographic unit, as opposed to facility-
based information, which may represent only persons from the
catchment area of a given health facility. Population-based surveil
lance is especially important in many developing countries because
of disparities in access to health facilities and health status between
urban and rural areas. Methods of population-based surveillance
include vital registration, periodic reproductive health surveys, and
21
Reproductive Health Epidemiology Series
surveillance at the local level (i.e., the lowest level of the health
system). Facility-based surveillance may include exit interviews, focus
groups, and reviews of health clinic records, and supervisory and
evaluation reports. Focus groups are often used as a first step in
generating ideas about why events and behaviors occur and are useful
in the design of surveillance systems (1). Exit interviews entail inter
viewing patients who have finished their visits at health facilities. Exit
interviews are ideal for measuring progress at the local level and can
be used to collect information on process indicators of health objec
tives, health risks, health behavior, and health interventions (17).
An important consideration in the design of surveillance systems is
that facility-based systems generally do not include cases outside the
health care delivery system. For example, a considerable percentage of
women in Tanzania go through labor and delivery at home; therefore,
a facility-based surveillance system of emergency obstetric complica
tions will represent only a certain segment of the population and may
not yield accurate information about labor and delivery complica
tions that can be extrapolated to the population.
Primary Versus Secondary Data
Data that are collected for the purposes of surveillance are called
primary data, and data that are collected for other reasons (i.e.,
administrative and financial records) but used for surveillance
purposes are called secondary data. Although most surveillance
systems collect data expressly for the purpose of supporting that
specific surveillance effort, secondary data sets are increasingly being
used in surveillance (2). Secondary data sets, which may include data
from community records and administrative data, usually differ from
primary data sources in a number of ways. Secondary data can be an
efficient and cost-effective source of surveillance data. Secondary data
generally are not available on a timely basis, however, and thus are
usually more useful for long-term rather than short-term interven
tions. Furthermore, all the desired health and sociodemographic
information may not be included since the data were not primarily
collected for the purposes of surveillance. For example, health main
tenance organization data systems have primarily been used for cost
accounting. Recently, these large data systems have been used to
investigate the adverse reactions to vaccines and to study the cost-
effectiveness of family planning services in preventing the high
costs of unintended pregnancy.
22
Module 1: Public Health Surveillance Applied to Reproductive Health
Passive Versus Active Surveillance
Primary surveillance data collection systems are usually classified
as passive or active (18). Passive, or provider-initiated, surveillance is a
form of data collection in which health care providers send reports
to a health department based on a known set of rules and regulations.
Most routine surveillance relies on passive reporting, in which health
care providers report notifiable diseases on an individual case basis
to the local level. Surveillance of infant deaths in the United States
offers another example of a passive reporting system, in which death
certificates are forwarded to the U.S. Centers for Disease Control and
Prevention with designated International Classification of Diseases
(ICD) codes. Passive systems are often limited by their lack of com
plete and representative data. They may not be sensitive enough
to detect outbreaks. The advantage of passive systems is that they
require less personnel to maintain than do active systems, and thus
are less expensive.
Given the shortcomings of passive surveillance systems, more active
systems may be necessary for conditions of particular public health
importance. Active, or health department-initiated, surveillance
involves regular outreach and routine solicitation of reports from
potential reporters to enhance the reporting of specific diseases or
conditions. In settings of limited resources, active surveillance is often
used for short periods for very discrete purposes, such as the elimina
tion of a particular condition from a population. Active surveillance
can be used to assess the representativeness of passive reports, enhance
the completeness of reporting of specific conditions, or supplement
epidemiologic investigations.
23
Module 1: Public Health Surveillance Applied to Reproductive Health
COMPONENTS OF THE SURVEILLANCE PROCESS
The process of surveillance consists of five main components: setting
goals and objectives, data collection, data analysis, interpretation
of data, and communication and dissemination of surveillance
information that is directly linked to public health action.
Setting Goals and Objectives: Surveillance
Based on Health Objectives and Program
Indicators
Identifying measurable health objectives, assigning them priority, and Useful Indicators in
linking the design of the surveillance system to those objectives will Reproductive Health
produce a closer connection between the process of surveillance and Epidemiology
public health action (17). It is useful to start with the end in mind
and decide on what public health action you want to take; what
decisions do you need to make about a particular health problem?
I mpact Indicators:
Reflect changes in the
primary health event of
The resulting surveillance system is more relevant to the users of the interest (i.e., morbidity,
information, which enhances the usability and effectiveness of the mortality) and other
system. Because of the inherent relationship between surveillance health outcomes.
and health programs, the surveillance process helps in designing
Outcome Indicators:
and refining health intervention programs, resulting in an efficient
Reflect changes in
use of resources.
knowledge, attitudes,
behaviors, or the
Indicators are useful in measuring progress toward predefined health
availability of necessary
objectives, as well as evaluating the health objective itself. An indica
services that result from
tor is a measurement that, when compared with either a standard or
program activities.
desired level of achievement, provides information regarding a health
outcome or management process. Indicators can serve as markers Process Indicators:
of progress toward improved reproductive health status. (See “Useful Specify the actions
Indicators in Reproductive Health Epidemiology” to the right.) An needed for program
indicator can either be a direct measure of impact, or an indirect one, implementation in order
which measures progress toward specified program goals. Indicator to achieve the intended
data are collected periodically over time to track progress toward outcomes.
system objectives. Impact indicators provide information on the end Adapted from: Reproductive
result, but do not provide insight into how the outcome was health in refugee situations:
achieved. For this reason, combining impact indicators with process an inter-agency field manual.
Geneva, Switzerland: United
(program activities) and outcome (results of those activities) indicators Nations High Commissioner
provides the best information to evaluate a surveillance system. for Refugees; 1999.
The issue of classification of indicators is widely debated, and definitions
vary among different organizations, but process, outcome, and impact
indicators are the main focus of this discussion. Process indicators are
generally easier to measure than outcome or impact indicators.
25
Reproductive Health Epidemiology Series
However, process indicators are limited in that they do not measure
the effectiveness of the process, nor do they measure the event of
primary interest (15). Thus, process indicators may not necessarily
correlate with outcome measures. Accordingly, although process
indicators are useful in the short term, outcome and impact measures
ultimately must be used to measure actual changes in health status.
For each predefined health objective, the indicator for evaluating that
objective should also be defined, as in the following example:
Table 4. Example of Types of Objectives and Indicators in Reproductive Health
Program Indicator Definition
Objective
Process indicator 100% of pregnant Coverage of Number of women delivering in the
women will be syphilis screening specified time period who had been
screened for syphilis tested for syphilis during the pregnancy
before delivery x 100
Number of live births in the specified
time period
Outcome indicator Reduce the percentage Syphilis infection Number of pregnant women screened
of pregnant women among pregnant for syphilis in the specified time period
who test positive for women who tested positive for syphilis
syphilis at delivery x 100
from x% to (x – n)% Number of pregnant women who
were tested for syphilis at delivery in
the specified time period
Impact indicator Reduce the perinatal Perinatal mortality Number of deaths in the perinatal
mortality rate from rate period (22 weeks gestation through
y% to (y – n)% 7 days of life) during a specified
time period
x 1,000
Total number of births (live births
plus fetal deaths) during the same
time period
Adapted from: Reproductive health in refugee situations: an inter-agency field manual. Geneva, Switzerland: United
Nations High Commission for Refugees; 1999.
The purpose of linking surveillance to health objectives is to reinforce
the concept that surveillance is a system that uses information from
multiple sources to impact health status, rather than simply the
reporting of disease. Furthermore, linking assists planners to think
creatively in efforts to build a surveillance system to measure all
priority health objectives.
26
Module 1: Public Health Surveillance Applied to Reproductive Health
Data Collection
The sources of data for public health surveillance and methods of
data collection have been described in previous sections. In general,
there are certain points to bear in mind regarding data collection.
First, sources of data and methods of collection should be pretested
to ensure feasibility. The training of personnel involved in data
collection is an important step in establishing a surveillance system.
Data collection instruments should ascertain the minimum informa
tion required for surveillance of the health event in order to enhance
the quality of data and avoid an additional burden on the health
system. Each element of data collected by surveillance should have
a clearly demonstrated use (2).
Routine methods of collecting data in a system can be cross-checked
periodically with other methods to enhance completeness of data;
for example, notifiable disease reports can be supplemented with
information from surveys or sentinel reporting. The instruments
used for data collection should have a standardized format to
facilitate data analysis and comparison of results from other surveil
lance systems or surveys. Standardizing the format of data collection
systems allows for ease of data entry with minimal errors. Use of a
standardized format is becoming more important with the shift
to applications of information technology to public health issues.
Depending on the resources of the particular region, this shift may
be either currently relevant or may occur in the future as resources
become available.
Analysis of Surveillance Data
The ability to effectively analyze, interpret, and present surveillance
data is an important skill for the public health worker. Regular and
systematic collection of surveillance information allows the descrip
tion of health events over time in the population under surveillance.
In conducting an analysis, surveillance data are usually compared
with an expected value, as well as with baseline information. Thor
ough analysis includes determination of both actual numbers and
rates. As with other descriptive epidemiologic data, surveillance
data are usually analyzed in terms of time, place, and person (1).
Time. Description by time is an important means of detecting
trends in the health event under surveillance. The comparison
of the number of case reports received during a particular interval
(i.e., days, weeks, months) may help to identify sharp changes in
case counts within the time interval. Comparing the number of
cases for a current time period with the number reported during
27
Reproductive Health Epidemiology Series
Public Health Informatics
Public health informatics is the application of information science and technology
to public health practice and research (19). This definition of public health informatics
encompasses more than computerizing public health information. It is the capability of available
technologies to manage information—whether those technologies include pencil and paper,
handheld calculators, computers, multimedia applications, or a network of global telecommunications
(20). The goal of public health informatics is to “speed and simplify the conversion of hypotheses
about the distribution and determinants of diseases in populations into usable information, and help
to disseminate new knowledge in ways that will support public health practice” (19).
Public health informatics can be applied to several components of surveillance (20).
Recording and reporting of cases. The completeness of case reporting depends largely
on the amount of effort it takes for the health practitioner to record and report the health event
of interest, and the subsequent steps needed to continue the reporting process at all levels of
the surveillance system. Two key concepts in enhancing reporting are standardization and
integration. By using standardized classification systems for reporting health-related data
(e.g., International Classification of Diseases, tenth revision [ICD-10]), surveillance data can
be efficiently reported at all levels of the surveillance system. Standardized, structured record
formats and variable definitions for reporting health-related data allow for flexibility in local data
collection systems (e.g., different software applications, additional variables of interest at the local
level), while creating an aggregate, integrated national database of health events.
Data transmission. The technologies associated with public health informatics facilitate
the transmission of raw surveillance data through electronic transfers, telecommunications, and
computer connectivity. The use of the Internet is increasing at all levels of surveillance, beginning
with individuals entering their own personal information into Internet-based data systems.
Analysis of data. The use of a computer for analysis of surveillance data is critical for any
but the most simple systems, and new technologies are changing the way analysis is done.
A primary example is the use of geographic information systems (GIS) to map and analyze
changes in the spatial distribution of health events.
Reporting and disseminating surveillance findings. New informatics technologies have
greatly increased the accessibility of surveillance findings through electronic transfer of reports,
Internet access, and multimedia presentations. Additionally, new methods of presenting data in
charts, graphs, and maps can enhance the visual perception of burden of disease and changes
in disease trends over time. These visual displays can be highly effective in presenting surveillance
data to decision makers, who can then rapidly take public health action.
The key to developing an effective surveillance system is making the best use of the available
technologies and looking to the future to integrate new technologies where they will be most helpful.
In designing and implementing any surveillance system, public health workers must address the
following questions (20):
1. Which specific component tasks of public health surveillance can informatics technology help
to perform more quickly, easily, and accurately?
28
Module 1: Public Health Surveillance Applied to Reproductive Health
2. For each task, which informatic functions are appropriate, useful, and applicable?
3. Which capabilities of this technology have already been put into use or are under
development?
4. What potential uses of informatic technology can we identify now?
In countries with limited resources, a well-planned and -managed paper record system
may continue to be the most efficient reporting system available. However,“as surveillance
information systems are implemented, every effort should be made to incorporate
standardized processes for system connectivity and integration, protocols for data exchange
and information access, core health data elements, and standard classification schemes” (21).
Further reading and information
Friede A, Blum HL, McDonald M. Public health informatics: how information-age technology
can strengthen public health. Annu Rev Public Health 1995;16:239–52.
Groseclose SL, Sullivan KM, Gibbs NP, Knowles CM. Management of the surveillance
information system and quality control of data. In: Teutsch SM, Churchill RE, editors. Principles
and practice of public health surveillance. 2nd ed. New York: Oxford University Press; 2000.
p. 95–111.
Kilbourne EM. Informatics in public health surveillance: current issues and future perspectives.
MMWR 1992;41:S91–S99.
Yasnoff WA, O’Carroll PW, Koo D, Linkins RW, Kilbourne EM. Public health informatics:
improving and transforming public health in the information age. J Public Health
Management Practice 2000;6:67–75.
Division of Public Health Surveillance and Informatics, CDC: http://www.cdc.gov/epo/
dphsi/index.htm
Health Informatics Worldwide: http://www.imbi.uni-freiburg.de/medinf/mi_list.htm
International Medical Informatics Association: http://www.imia.org/
the same interval in previous years may help determine seasonal
patterns of the health event. Graphing the occurrence of a health
event over time is a way to identify long-term (secular) trends. It is
useful to note significant events that may have influenced secular
trends on graphs of surveillance data. These events may include
implementation or cessation of intervention programs, changes in
the case definition used for surveillance, changes in public awareness
of a condition, or increased intensity of surveillance. In addition, the
delay between the occurrence of health outcome and reporting of the
problem should be considered when analyzing surveillance data by
29
Reproductive Health Epidemiology Series
time. To minimize inaccuracies in the data, the interval between case
identification and report must be identified and used consistently for
reporting of all cases. Selecting the appropriate interval for analysis is
dependent on the health condition under study and can range from
Framework for
time of exposure to expression of symptoms, from symptoms to
Data Analysis
diagnosis, or from diagnosis to report of case to public health authorities.
1. Identify appropriate
and feasible rates or Place. Analysis by place can help identify where an increase in cases
indicators prior to is occurring and may also reveal isolated outbreaks of a health event
data collection. that were not detected in the analysis by time. For example, even if
the overall numbers of a particular problem are decreasing, levels
2. Calculate rates, ratios, (including increases) of the number of cases may vary by geographic
proportions. location. The identification of these focal areas allows prevention
3. Prepare tables, graphs, resources to be targeted effectively. The size of the unit for geographi
and charts. cal analysis is determined by the type of health event under surveil
lance. For example, for some rare conditions, large areas such as
4. Compare rates with states or countries may be appropriate, whereas for events that
expected values, occur frequently or for outbreak situations, smaller areas may be
reference rates, and more appropriate. However, the use of smaller geographic areas
baseline rates. must be balanced with a need for enough data to provide stable
5. Use statistical estimates. Analysis by place can be carried out using maps or tables;
probability methods the availability of computers and software for spatial mapping allows
to determine whether more sophisticated analysis of surveillance data by place.
apparent differences
in rates are significant. Person. The analysis of surveillance data by person provides informa
tion on the characteristics of those experiencing the health problem
6. Prioritize the most or those most likely to be exposed to the health event under surveil
important health lance. The most frequently used demographic variables for analyses
problems—cause by person are age, gender, and race or ethnicity. Other variables such
specific morbidity as marital status, occupation, levels of income, and risk factors for
and mortality rates. certain health outcomes may be helpful, although most surveillance
7. Identify subgroups systems do not routinely collect such information. Surveillance
at highest risk. systems have also been used to study behavioral characteristics
of populations.
8. Identify factors
potentially responsible Interactions between time, place, and person can obscure important
for morbidity and patterns of disease in specific populations. Proceeding from crude
mortality. rates to variable-specific rates during the analysis phase may clarify
the effects of interactions between time, place, and person and reveal
more meaningful trends in the surveillance data. For information on
calculating reproductive health rates and ratios using surveillance
data, refer to Appendix A.
30
Module 1: Public Health Surveillance Applied to Reproductive Health
Interpretation of Surveillance Data
Adapted from: Janes GR, Hutwagner LC, Cates W Jr, Stroup DF, Williamson GD.
Descriptive epidemiology: analyzing and interpreting surveillance data. In: Teutsch SM,
Churchill RE, editors. Principles and practice of public health surveillance. 2nd ed. New
York: Oxford University Press; 2000. p. 112–67.
Interpretation is the process of transforming the data obtained from
the surveillance system into information for action. Quality data play
a crucial role in allowing health staff to modify and refine the way
they are doing things in the field, and in focusing the attention of
policymakers on the health status of a population. Data should not be
interpreted in isolation, but rather with a background knowledge of
the etiology, epidemiology, and natural history of the disease or health
event. Interpretation of surveillance data provides information that
can be used in identifying epidemics, monitoring trends, evaluating
public policy, and projecting future needs.
Identifying epidemics. Through systematic surveillance, increases
of a health event to epidemic proportions can be identified in data
analysis. Surveillance data often provide adequate information to
detect increases in the prevalence of a health event. In the interpreta
tion phase, it is important to consider whether trends are stable,
gradually rise and fall, or show occurrence of an abrupt increase
over that which was expected. Several factors, however, could result
in an increase in the number of cases reported, including population
changes due to migration, improved diagnostic procedures, enhanced
reporting techniques, and changes in the surveillance system or
methods. Although any variation in the incidence or prevalence
of a health event should be taken seriously, it is important to
consider these factors when making any inferences.
Monitoring trends. Long-term temporal trends in surveillance data
should be explained in the interpretation phase. Surveillance is
especially critical in chronic diseases and reproductive health, in
which interventions based on long-term trends have more impact
than in epidemics, which require rapid investigation and control
measures. Collection of regular, systematic surveillance data enables
adequate monitoring of various health events and can help in deter
mining appropriate intervention and prevention strategies.
Evaluating public policy. Health interventions and the effect of
policies on these interventions can be evaluated using surveillance
data. Evaluating surveillance data can enhance management decision-
making for more efficient resource utilization, improved program
operations, and maximum public benefit.
31
Reproductive Health Epidemiology Series
Projecting future needs. Future trends can be predicted by looking at
current surveillance data and applying mathematical models to these
data. For example, when changes occur in risk factors among a popula
tion at risk for a health event, changes in morbidity and mortality from
that health event can be predicted using surveillance data.
Limitations of surveillance data. Several things should be kept in
mind when analyzing data from surveillance systems. First, knowl
edge of the strengths and weaknesses of the data collection methods
and reporting system will provide insight on the trends that emerge
from the analysis of data; that is, are the observed trends in data
“real”? Analysis should proceed from the simplest procedures to the
most complex. Be aware of the quality of data collected and of any
discrepancies if reporting from multiple sources, because these factors
will, in turn, dictate the level of analysis that can be performed on the
data with minimum bias and misinterpretation.
The accuracy of surveillance data is evaluated in terms of their
reliability and validity. It is important to know whether the particular
health event is reported consistently by different observers (reliabil
ity), and also whether reports of the health event under study reflect
the true condition as it occurs (validity). Another basic concept to
consider in the analysis of surveillance data is ecological fallacy.
Ecological fallacy may occur when interpreting observations about
groups. Ecological fallacy can be in the form of aggregation bias,
which arises from loss of information when individuals are grouped,
or specification bias, which arises from the definition of the group
itself. Care should be taken to reduce the chances of ecological fallacy
by analyzing subsets of data to reveal disparate trends within the
survey data.
Limitations of the collected data must be recognized, interpreted,
and reported. Underreporting may be inevitable because most
surveillance systems are based on conditions reported by health
care providers. However, so long as the underreporting is relatively
consistent, incomplete data can still be used to identify disease trends.
Another surveillance issue is that reporting biases can distort estimates
of disease burden. For example, a health problem that leads to hospi
talization may more likely be reported than problems seen on an
outpatient basis. This bias may be reduced by adjusting for skewed
reporting, or by collecting data from multiple sources where feasible.
When interpreting surveillance data, one should be aware of inconsis
tencies in case definitions and any changes in existing definitions that
may affect the accuracy of case reports. Overall, data analysts need
32
Module 1: Public Health Surveillance Applied to Reproductive Health
to ensure representativeness in the reported cases, consistency in case
definitions, and a commitment to enhancing the timeliness in data
collection and reporting.
Communication of Findings From Surveillance
Communicating the results of surveillance is the next step in the
process of transforming the data into information for action (22).
Information generated from surveillance serves to inform and moti
vate the recipients, so it is more appropriate to communicate, rather
than simply disseminate, surveillance information. Dissemination
implies a one-way process in which information is conveyed from
one point to another, whereas communication is a collaborative
process involving at least a sender and a recipient. Thus, the process
of communicating surveillance data is not complete until recipients
acknowledge receipt (dissemination) and comprehension of the
information (feedback). Health personnel are more likely to continue
the challenging job of collecting information if they know what is
being used and acted on.
People who need to receive communication about surveillance infor
mation include those who report cases and supply data (e.g., health
care providers, laboratory directors), and those who need to know
for administrative, program planning, and decision-making purposes
(22). It is critical that the results and recommendations generated by
the data lead to concrete action for achieving predetermined health
objectives. Table 5 lists guidelines for communicating surveillance
information:
Table 5. Framework for Disseminating Results of Public Health Surveillance
Controlling and Directing Information Dissemination
Steps Questions to Be Answered
Establish communications message What should be said?
Define audience To whom should it be said?
Select the channel Through what communication medium?
Market the message How should the message be stated?
Evaluate the impact What effect did the message create?
Adapted from: Goodman RA, Remington PL, Howard RJ. Communicating information for action within the public
health system. In: Teutsch SM, Churchill RE, editors. Principles and practice of public health surveillance. 2nd ed.
New York: Oxford University Press; 2000. p. 168–75.
33
Reproductive Health Epidemiology Series
Depending on available resources and the needs of the audience,
many possible channels of communication exist for surveillance data,
including simple chalkboards, posters and pamphlets, formal publica
tions, electronic media (telecommunications systems, fax, and audio
and videoconferences), mass media, and public forums. Irrespective
of the target audience or channel of communication, the information
should be presented in a clear and simple format. Graphic formats
and other visual displays are likely to be more effective in conveying
information than conventional tabular presentations of figures.
The communication aspect of surveillance should be periodically
evaluated to ensure that the surveillance information is being
communicated to those who need to know and that the information
is benefitting the population through initiation of appropriate public
health action or response. Although formal evaluations may not
always be conducted, these objectives should always be considered
when planning the communication of surveillance data. Ultimately,
effective communication of public health surveillance information
represents the critical link in translating scientific information into
public health practice.
Implementing Public Health Action
Based on Surveillance Data
The implementation of public health action as a result of information
linked through surveillance depends primarily on how effectively
the data are disseminated to public health officials and policymakers
responsible for directing and funding public health strategies and
programs. Analysis and interpretation of surveillance data provide
a basis for the identification of problems and possible solutions
within the health care sector. Ongoing surveillance activities
permit assessment and modification of intervention efforts already
in progress. When data are provided in a timely fashion to the health
sector, they may be used for the planning, development, implementa
tion, and evaluation of public health programs. This connection
between data collection and public health action continues to be
the vital link that underscores the value and utility of surveillance
as a tool (2).
34
Module 1: Public Health Surveillance Applied to Reproductive Health
EVALUATION OF SURVEILLANCE SYSTEMS
Regular review of an established surveillance system allows health
staff to modify and refine health actions taking place in the field.
It can also be the first step in assessing how to address the need for
surveillance information for a new health outcome—whether that
information can be collected by modifying an existing system or
whether a new system is needed. Evaluation of surveillance systems
is a key step in promoting the best use of public health resources
and should include recommendations for improving quality and
efficiency. Evaluation of surveillance systems promotes the
best use of public health resources by ensuring that public health
problems are under surveillance, that surveillance systems operate
efficiently, and that information disseminated by surveillance systems
is useful for public health practice (23). Evaluation of a public health
surveillance system involves an assessment of the system’s attributes,
including sensitivity, timeliness, representativeness, predictive value,
accuracy and completeness of descriptive information, simplicity,
flexibility, and acceptability (23). An evaluation of the system must
consider those attributes that are of the highest priority for a particu
lar system and its overall objectives.
Elements in Evaluation of Surveillance Systems
A thorough evaluation should identify ways of improving the
system’s operation and efficiency. CDC has an established system
for evaluating surveillance systems (23), which is available at
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5013a1.htm.
Briefly, in evaluating a surveillance system, the following tasks should
be conducted:
A. Engage the stakeholder in the evaluation.
B. Describe the surveillance system to be evaluated.
1. Describe the public health importance of the health-related
event under surveillance.
2. Describe the purpose and operation of the surveillance system.
3. Describe the resources used to operate the system.
C. Focus the evaluation design.
1. Determine the specific purpose of the evaluation.
2. Identify stakeholders who will receive the findings and recom
mendations of the evaluation.
35
Reproductive Health Epidemiology Series
3. Consider what will be done with the information generated
from the evaluation.
4. Specify the questions that will be answered by the evaluation.
5. Determine standards for assessing the performance of the
surveillance system.
D. Gather credible evidence regarding the performance of the
surveillance system.
1. Indicate the level of usefulness.
2. Describe each system attribute.
E. Justify and state conclusions, making recommendations.
F. Ensure use of evaluation findings and share lessons learned.
36
REPRODUCTIVE HEALTH EPIDEMIOLOGY
SERIES—MODULE 1
CASE STUDY I
AN EVALUATION OF A
REPRODUCTIVE HEALTH
SURVEILLANCE SYSTEM
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
CASE STUDY I: AN EVALUATION OF A
REPRODUCTIVE HEALTH SURVEILLANCE SYSTEM
STUDENT VERSION
Learning Objectives
After completing this case study, the participant should be able to:
• Outline the elements of evaluating a surveillance system.
• Discuss the factors contributing to the public health importance of
a health event.
• Provide examples of impact, process, and outcome indicators useful
in evaluating a reproductive health surveillance system.
• Assess the usefulness of the information being collected and of the
information flow of the surveillance system as a whole.
• Evaluate the surveillance system in terms of the following
attributes: simplicity, flexibility, acceptability, sensitivity, predictive
value positive, representativeness, and timeliness.
39
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
CASE STUDY I: AN EVALUATION OF A
REPRODUCTIVE HEALTH SURVEILLANCE SYSTEM
Background
The reproductive health of women is especially vulnerable in a crisis
situation such as exists at a refugee camp. In addition to the lack of
normal sources of reproductive health care (e.g., family planning,
prenatal care, safe delivery), the disruption of normal social patterns
can lead to sexual violence, unplanned pregnancies, unsafe abortions,
and increased incidence of sexually transmitted diseases. Even in the
most organized refugee settings, the reproductive health needs of
women often go unnoticed and unprotected.
In 1991, Azerbaijan declared its independence from the Soviet
Union. In 1992, ethnic Armenians occupied the disputed region of
Nagorno-Karabakh and surrounding regions in Azerbaijan. By 1996,
there were 845,000 refugees or internally displaced persons (IDPs) in
Azerbaijan. The deterioration of the existing health system caused a
shift from pregnant women delivering in government hospitals to
delivering at home with local midwives instead of government-
employed physicians. During this time, there was no effective family
planning program in Azerbaijan, mostly due to cultural attitudes,
high costs of birth control, and limited availability of and access to
up-to-date information.
In 1996, a relief organization established the Reproductive Health
Surveillance System to help meet the reproductive health needs of
refugee and displaced women in Azerbaijan. By 1998, this organiza
tion operated 6 reproductive health clinics and 11 mobile units
serving 14 rural districts throughout central Azerbaijan. The follow
ing services were offered to the women: a physical, gynecological,
and pelvic examination; family planning counseling; STD and PID
treatment; reproductive health education; and provision of contracep
tive supplies. Abortions were not provided in the clinics; however,
women who wished to obtain an abortion were referred to a govern
ment hospital. Some of the early findings of the surveillance system
showed that a high number of abortions and frequent clinic visits for
pelvic infections were occurring among these women. In 1998, an
evaluation of this surveillance system was conducted.
41
Reproductive Health Epidemiology Series
Evaluation of Surveillance Systems
Regular review of an established surveillance system allows health staff
to modify and refine health actions taking place in the field. Evalua
tion of surveillance systems is an important step in promoting the
best use of public health resources and should include recommenda
tions for improving quality and efficiency. Most importantly, an
evaluation should assess whether the system is serving a useful public
health function and is meeting the system’s objectives.
Q1: Regular review of an established surveillance system is necessary
to assess its usefulness, cost, and quality, and to direct possible
modifications. List the steps to take in evaluating a surveillance
system.
Family Planning, Abortion, and Public Health
Burden of PID in Azerbaijan
Abortion has long been the primary method of birth control in
Azerbaijan, as in much of the former Soviet Union. According to
national statistics, the contraceptive prevalence rate (primarily for
oral contraceptive pills and IUDs) was less than 1% before 1992,
1.4% in 1996, and 2% in 1997. The rate of abortions in 1990 was
14 per 100 deliveries. However, after Azerbaijan’s independence, the
rate of abortions rose to 23 per 100 deliveries in 1994. Alarmingly,
data on complications associated with clinical abortions indicate a
tremendous increase since the early 1990s.
Data from the Reproductive Health Surveillance System showed
that refugee and IDP women visiting clinics were experiencing high
rates of postabortion infections, many of which were reported to be
pelvic inflammatory disease (PID). Anecdotally, many women were
having abortions for “menstrual regulation” without first having a
pregnancy test.
PID encompasses a spectrum of inflammatory disorders of the upper
female genital tract. It is caused by bacteria, most often those respon
sible for sexually transmitted diseases such as gonorrhea and chlamy
dia; other pathogens, such as those that cause bacterial vaginosis, may
also be responsible for the development of PID. It is estimated that
42
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
between 10% and 20% of cervical gonococcal or chlamydial infec
tions may progress to PID when left untreated (23).
Acute PID is difficult to diagnose because of the wide variability in
symptoms and severity among women. As a consequence, delay in
diagnosis and effective therapy probably contribute to inflammatory
sequelae in the upper reproductive tract. Long-term complications of
PID include ectopic pregnancy, infertility, pelvic adhesions, and
chronic pelvic pain (24). Diagnosis is further complicated by the lack
of a widely accepted clinical criteria for PID.
Q2: Health events that affect many people clearly have public health
importance, as do events that cluster in time and place, affecting
relatively few people. In a refugee setting, reproductive health
may not be prioritized until the initial emergency phase is
stabilized. However, once high mortality rates are under control
and basic needs properly addressed, complete and integrated
reproductive health services can be planned (25). What questions
would be useful to ask in ascertaining the public health impor
tance of surveillance for PID among refugee women in
Azerbaijan?
Evaluation of the Surveillance System for PID
The Reproductive Health Surveillance System had been in place for
more than two years before the preliminary evaluation conducted in
July 1998. Routine monthly data collected at the stationary clinics
indicated that a large proportion of the women had symptoms
associated with postabortion pelvic infection, which was considered
to be PID. This review of the data helped to define a new program
objective to decrease the incidence of symptomatic cases of PID by
15%. In addition, the majority of these symptoms were associated
with recent induced abortion. Strategies to reduce the number of PID
cases focused on ways to prevent PID associated with induced abor
tion, including decreasing the number of women relying on abortion
as their sole method of birth control and increasing access to family
planning services.
43
Reproductive Health Epidemiology Series
The evaluation of surveillance systems generally involves the defini
tion of indicators to track the progress toward explicit, quantifiable,
and time-limited objectives (26). Once the objectives of a surveillance
system have been defined, indicators are used as markers of progress
toward improved reproductive health. Indicators can either be direct
measures of impact, or indirect measures of progress toward specified
process goals. An indicator can be thought of as a measurement that
provides information regarding a health outcome, when compared
with a standard or desired level of achievement. Indicators are re
peated over time to track progress toward the system objectives.
Impact indicators provide information on the end result, but do not
provide insight into how the outcome was achieved. For this reason,
combining impact indicators with process (program activities) and
outcome (results of those activities) indicators provides the best infor
mation to evaluate a surveillance system.
Q3: What is the new program objective adopted after the
preliminary evaluation in July 1998?
Q4: In terms of the surveillance system for PID among Azeri refugee
women, fill in the blank spaces below with examples of each of
the three indicators that could be used to track progress toward
achieving the objectives of the system.
Useful Indicators for Evaluating a Reproductive Health Surveillance System
Type Description Reproductive Health Example
Impact Reflects changes in health status expected
to result from program activities
Outcome Reflects changes in knowledge, attitudes,
behaviors, or the availability of necessary
services that result from program
activities
Process Specifies the actions needed for program
implementation in order to achieve
the intended impact and outcomes
44
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
Once the indicators are in place, it may be necessary to restructure
the surveillance system to collect information relevant to the
indicator. An assessment of the monthly surveillance form in use
before the evaluation revealed several missing links between program
objectives and data being collected in the field. It was found that
the information being collected was inadequate for determining
the differences in incidence of postabortion-complicated and
nonprocedure-related cases of symptomatic PID. Data on the hospital
performing the abortion were not being collected. There were no data
collected on IUD insertion and incidence of PID. Also, self-reported
PID was not being captured. However, after the addition of a few
simple questions that served to distinguish between the causes
of infection, health workers would be able to evaluate trends in
PID visits, estimate the proportion of PID likely due to postabortion
complications, and examine the impact of health education and
interventions on PID prevention. In this way, the surveillance system
became linked to the program objective of reducing the incidence
of symptomatic cases of PID by 15%.
Once the collection of relevant surveillance data has begun, simple
calculations may be useful in monitoring monthly progress. Monthly
reporting can be used as a way of showing what work is being done
in the field, as well as producing a measurable improvement in the
indicators. The following is an example of a simple chart that could
be included in monthly feedback reports:
Number of Postabortion-Complicated Cases of PID, August–September 1998
August 1998 September 1998
Number of postabortion infection cases seen
in clinics ....................................................................................................................... 195 188
Number of women diagnosed with postabortion
complicated PID .......................................................................................................... 177 145
Percentage of postabortion-complicated PID cases
out of total number of postabortion infection cases ......................................................90% 77%
In August and September of 1998, a large proportion of women
classified as “postabortion infectional” was diagnosed with
postabortion-complicated PID, providing strong evidence for the
relationship between abortion and PID. Perhaps the most effective
way of presenting this information is graphically, so that anyone can
see at a glance the trend from month to month. When presented
graphically, for instance, as a line graph of the percentage of PID
cases out of total number of postabortion infectional cases seen each
45
Reproductive Health Epidemiology Series
month, the information could be used as a tool to focus the attention
of decision makers on PID as a public health problem, mobilize
public health resources to address PID treatment and prevention, and
guide and refine the relief program that is being put in place. In sum,
“good” data are reliable, accurate, and presented in a way that anyone
can understand (16).
Q5: Develop a shell of a graph to monitor whether the new program
objective is being met, based on the indicators. Label the axes,
title, and key of the graph.
Case Definition of PID
In this refugee setting, women attending any of the six stationary
reproductive health clinics present potentially important opportuni
ties for the detection and management of PID. Despite comprehen
sive physical examinations, many episodes of PID go unrecognized.
Although some cases are asymptomatic, others are undiagnosed
because of mild or nonspecific symptoms. Without a clear case
definition, it is also possible that some cases of “postabortion infec
tion” may have been diagnosed as PID erroneously. The lack of
sensitive, specific, rapid, and inexpensive diagnostic tests for PID is a
significant obstacle for case ascertainment, particularly among asymp
tomatic women.
The wide variability of PID symptoms necessitates an alternative
strategy for clinical diagnosis. In detecting symptomatic cases of PID,
the use of clinical algorithms based on risk assessment and symptoms
is an alternative strategy in settings with limited access to diagnostic
tests. This strategy, also known as the syndromic approach, requires
experience and continued training of clinicians and can significantly
influence the yield of case ascertainment. Using this approach, a
case of PID is identified if all of the following minimum criteria are
present: 1) lower abdominal tenderness and pain; 2) adnexal tender
ness; and 3) cervical motion tenderness. Additional criteria used
to support a diagnosis of PID are oral temperature over 101AF and
abnormal cervical or vaginal discharge (27). This case definition was
adopted by the clinics, and health care providers were quickly trained
in the use of the syndromic approach.
46
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
Q6: What is the case definition of PID for this surveillance system?
Assess the ability of the surveillance system to capture symptom
atic cases of PID.
The target population for PID surveillance is women attending any
one of six stationary reproductive health clinics in Azerbaijan. The
doctor or midwife for every woman seen at the stationary clinics fills
out the women’s health card and the Women’s Reproductive Health
(WRH) register each day. The data from the cards are tallied and
entered on daily reporting forms. Each week, the daily reporting
forms are compiled and sent to Baku, the capital city.
Information generated from surveillance serves to inform and moti
vate the recipients, thereby enhancing collaboration and improving
the level of reporting to the system. The surveillance report should
include summary information on the occurrence of the health event
by person, place, and time. In the surveillance system for PID, a
data specialist computerizes and compiles a morbidity and mortality
monthly report using the daily reporting forms. This report is gener
ated within one week of the end of each month and disseminated
for trend analysis and program development. The quarterly report
is compiled and written by the field coordinator, and reviewed by
the medical coordinator and country director in Baku. In order
to provide information for appropriate action by health workers
and decision makers, the quarterly report is disseminated to the
relief organizations headquarters in the United States, the donor
(United Nations High Commission on Refugees), and the Ministry
of Health in Baku.
Q7: Is the Reproductive Health Surveillance System a population-
based or facility-based system? What are the advantages and
disadvantages of this type of system? How might the type
of system affect the reported prevalence of PID in this
population?
47
Reproductive Health Epidemiology Series
Often it is useful to sketch a simple flowchart to better illustrate the
steps involved in processing the data obtained through the surveil
lance system. This chart can help to answer the following important
questions:
• What information is being collected? Is it what programs need?
• What are the reporting sources? Who is supposed to report? Who
actually does report?
• How are the data handled? How are they routed, transferred, and
stored? Are there unnecessary delays?
• How are the data analyzed? By whom? How often?
• How is the information disseminated? How often are reports
distributed? To whom? Is the information getting to all those who
need to know?
Q8: Draw a simple sketch of the existing flow of data, and suggest
some changes that would enhance the ability of those using the
data to make decisions and take actions.
It is important to give feedback to the workers in the field who are
the primary source of information. Discussions with clinic health
workers revealed that they found the data collection system acceptable
and not too burdensome; however, they felt that they were not
receiving any feedback. For this reason, it is suggested that a link
between the office in Baku and the local clinic staff would strengthen
the surveillance system. This linkage, indicated by the dotted line
(page 57), should enhance the timeliness of the system by making
data available to local clinic staff both for immediate control efforts
and for long-term program planning. At all levels of the system, the
analyzed data should be used to reassess system indicators and to
confirm whether program objectives have been met.
48
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
Action
The recommendations from the July 1998 evaluation of the
Reproductive Health Surveillance System included the following:
• Change in objectives to focus on an important reproductive health
problem in this population.
• Change in indicators to monitor progress toward this objective.
• Change in data forms to collect information to calculate the
indicators.
• Change in case definition for PID and training in how to use this
case definition.
Most of these changes were instituted during the following month,
and the statistics for August and September 1998 reflected these
changes. The health care providers quickly adapted to the new forms
and were enthusiastic about their training in the syndromic approach
in order to use the new PID case definition. With appropriate train
ing and information, clinic health staff were able to adjust to using
the syndromic approach to PID case detection with little difficulty.
Below are some data from the August and September 1998 monthly
reporting forms.
August 1998 September 1998
Number of sexually active women seen in the clinics........................................ 1,123 987
Postabortion infectional ....................................................................................... 195 188
PID Postabortion .......................................................................................... 177 145
Not abortion-related ................................................................................. 1 7
Number of women using contraception .............................................................. 512 460
Q9: What indicators can you calculate from the table above? What
are the interpretations of these indicators and the data from the
table?
49
Reproductive Health Epidemiology Series
In addition to the actions taken to modify the surveillance system and
change clinical practice, the results from the Reproductive Health
Surveillance System were used to develop a retrospective cohort study
to test the hypothesis that women who undergo abortions are at
increased risk of PID. Preliminary results from this study show that
although abortion itself is not associated with PID, the following risk
factors are:
• Husband or partner with a sexually transmitted infection.
• No antibiotics during the last abortion.
• Abortion without confirming pregnancy with a pregnancy
test first.
• Preexisting bacterial vaginosis infection (although chlamydia
and gonorrhea infection were not associated with PID).
Because of the low number of women using methods of contracep
tion in this population, the relief organization has worked with other
relief agencies in Azerbaijan as well as the Ministry of Health, to
increase family planning services and supplies at the national level
for refugees/IDPs as well as for the general population.
Cost
The yearly budget for the operation of the reproductive health pro
gram was $140,000 in 1997. This amount covers both the clinical
care and the surveillance components of the six reproductive health
clinics, including salaries, clinic equipment, travel and transportation,
printing, and publishing reports.
Attributes of the PID Surveillance
System in Azerbaijan
Several qualities or attributes affect the operation and usefulness of a
surveillance system. The simplicity of a surveillance system refers both
to its structure and ease of operation. Ideally, a surveillance system
should be as simple as possible, while still meeting its objectives. The
flexibility of a system is defined as the ability of a system to adapt to
changing needs or operating conditions with little additional time,
personnel, or allocated funds. In general, simpler systems will be more
flexible since fewer components will need to be modified when
adapting the system. The flexibility of a system often is judged best
retrospectively, after a change has been put in place and its impact on
the system can be evaluated. The acceptability of a system reflects the
willingness of individuals and organizations to participate in the
surveillance system.
50
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
The primary means of assessing the sensitivity of a surveillance system
is to estimate the proportion of the total number of cases in the
population being detected by the system, assuming that most re
ported cases are correctly classified. The sensitivity of a surveillance
system is affected by the likelihood that 1) persons with the health
condition will seek medical care; 2) the disease will be diagnosed,
reflecting the skill of health care workers and the sensitivity of diag
nostic tests; and 3) given the diagnosis, the case will be reported to
the system. Increasing the sensitivity of a system may enhance the
detection of epidemics and the understanding of the natural course
of an adverse health event in a defined population. With respect to
surveillance, predictive value positive (PVP) is defined as the propor
tion of persons identified as cases who actually have the health event
under surveillance. The PVP is directly related to the sensitivity and
specificity of the health event, as well as the prevalence of the condi
tion in the population; the PVP increases with increasing specificity
and prevalence. A representative surveillance system accurately charac
terizes the epidemiologic characteristics of a health event in a defined
population and time frame. Timeliness refers to the availability of data
and information in time for appropriate action and reflects the speed
or delay between steps in a surveillance system. Improving the timeli
ness of a surveillance system allows control and prevention activities
to be initiated earlier.
Q10: Discuss the surveillance system for PID with respect to the
following attributes: simplicity, flexibility, acceptability, sensitiv
ity, predictive value positive, representativeness, and timeliness.
51
Reproductive Health Epidemiology Series
Q11: Describe the usefulness of this surveillance system. What have
the data from this surveillance system been used for and what
impact has the system had on reproductive health care for
refugees in Azerbaijan?
52
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
Answers
Q1: Regular review of an established surveillance system is necessary
to assess its usefulness, cost, and quality, and to direct possible
modifications. List the steps to take in evaluating a surveillance
system.
A1:
a) Describe the public health importance of the health event.
b) Describe the surveillance system to be evaluated.
• List the objectives of the system.
• Describe the health system under surveillance, including the
case definition.
• Draw a flowchart or diagram of the system.
• Describe the components and operation of the system.
Include information on surveillance population, time frame
of data collection, type of information collected, transfer and
analysis of data, and distribution of reports.
c) Assess the level of usefulness of the surveillance system by
describing actions taken as a result of the data generated by
the system.
d) Evaluate the system in terms of the following attributes:
Simplicity – the extent to which a surveillance system is
uncomplicated in structure and easy to operate.
Flexibility – the extent to which a surveillance system can
adapt to changing information needs or operating conditions
with little additional cost.
Acceptability – the willingness of individuals and organizations
to participate in the surveillance system.
Sensitivity – an estimate of the proportion of the total number
of cases in the community being detected by the system.
Predictive Value Positive (PVP) – the proportion of persons identi
fied as cases who actually have the condition under surveillance.
Representativeness – the extent to which the surveillance system
accurately characterizes the epidemiologic characteristics of a
health event in a defined population.
Timeliness – the speed or delay between steps in the surveil
lance system.
53
Reproductive Health Epidemiology Series
e) Compare the direct costs of operating the surveillance system
with the benefits obtained.
f ) List your recommendations, addressing whether the system is
meeting its objectives.
Q2: Health events that affect many people clearly have public health
importance, as do events that cluster in time and place, affecting
relatively few people. In a refugee setting, reproductive health
may not be prioritized until the initial emergency phase is
stabilized. However, once high mortality rates are under control
and basic needs properly addressed, complete and integrated
reproductive health services can be planned (26). What questions
would be useful to ask in ascertaining the public health impor
tance of surveillance for PID among refugee women in
Azerbaijan?
A2:
a) What are some measures of burden of disease, for example,
total number of cases, incidence, prevalence of PID among
refugee/internally displaced women in Azerbaijan, number of
postabortion-complicated cases of PID, number of symptom
atic cases of PID associated with IUD insertion, number of
referrals for abortions?
b) Is an identifiable subgroup of the population at greater risk
for PID, for example, women with histories of abortion,
women referred to particular hospitals for abortions, women
of certain age groups, women with histories of IUD insertion?
c) Are there efficacious treatments or preventive measures for
PID? And, furthermore, what are the physical, social, and
emotional sequelae of undetected and/or untreated PID?
d) What are the direct and indirect costs associated with PID,
for example, medical-care expenses and lost worktime?
Q3: What is the new program objective adopted after the preliminary
evaluation in July 1998?
A3: Decrease the incidence of symptomatic cases of PID by 15%.
Q4: In terms of the surveillance system for PID among Azeri refugee
women, fill in the blank spaces below with examples of each of
the three indicators that could be used to track progress toward
achieving the objectives of the system.
A4: In keeping with the objective of decreasing the incidence of symp
tomatic PID by 15%, an example of an impact indicator is the
54
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
Useful Indicators for Evaluating a Reproductive Health Surveillance System
Type Description Reproductive Health Example
Impact Reflects changes in health status expected Percentage of women with postabortion-complicated
to result from program activities cases of PID
Outcome Reflects changes in knowledge, attitudes, Percentage of women relying on abortion as their
behaviors, or the availability of necessary sole method of birth control
services that result from program
activities
Process Specifies the actions needed for program Percentage of clinic providers trained in family
implementation in order to achieve planning services
the intended impact and outcomes
percentage of women with postabortion-complicated cases of PID
seen at the clinics each month. Outcome indicators relate directly to
the priority intervention, the target population, or those charged
with caring for the target population. The percentage of women
relying on abortion as their sole method of birth control is an
example of an outcome indicator that you would expect to decrease
with the intervention. Process indicators correspond to various
activities necessary to achieve the intended outcomes and impact,
for example, training, supply of drugs and equipment, and health
education. In this refugee setting, the percentage of health workers
trained in providing family planning services could be used as a
process indicator.
Q5: Develop a shell of a graph to monitor whether the new program
objective is being met, based on the indicators. Label the axes,
title, and key of the graph.
A5: This is one example of a shell of a graph to monitor the indicators.
Change in Percentage of Women Relying on Abortion
as Their Sole Method of Contraception
70
60
50
40
Percent
30
20
10
0
Jan 2001 June 2001 Jan 2002 June 2002 Jan 2003
Time
55
Reproductive Health Epidemiology Series
Q6: What is the case definition of PID for this surveillance system?
Assess the ability of the surveillance system to capture symp
tomatic cases of PID.
A6: A case of PID is identified if all of the following minimum
criteria are present: 1) lower abdominal tenderness and pain;
2) adnexal tenderness; and 3) cervical motion tenderness.
Additional criteria used to support a diagnosis of PID are
oral temperature over 101AF and abnormal cervical or vaginal
discharge.
In the clinics, the sensitivity of the system in detecting
true cases of PID among refugee women is judged to be poor,
mainly due to imprecise syndrome diagnosis, the lack of a
gold standard, and the variability in clinical presentation. It is
thought that a meaningful proportion of true cases of PID are
not being captured by the system. As health workers become
better trained in using the syndromic approach to PID detec
tion, the proportion of true cases to the total number of cases
classified as PID should increase.
Q7: Is the Reproductive Health Surveillance System a population-
based or facility-based system? What are the advantages
and disadvantages of this type of system? How might the
type of system affect the reported prevalence of PID in this
population?
A7: The Reproductive Health System is a facility-based system.
Advantages of this system include a relatively simple method
of data collection in a defined facility-based population, with
clinical verification of diagnoses and follow-up. The main
disadvantage is the lack of information about women with
PID who do not come to the clinic. This situation may cause
the prevalence of PID to be severely underestimated especially
because PID is often asymptomatic and women may not come
to the clinic for treatment.
Q8: Draw a simple sketch of the existing flow of data, and suggest
some changes that would enhance the ability of those using the
data to make decisions and take actions.
56
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
A8:
Women’s Health Card and WRH Register
Filled out daily at clinic by doctor or
midwife; tallied and entered on daily
reporting form
▲
Daily Reporting Form
Filled out daily by doctor or midwife and
sent weekly to Baku
▲
Morbidity and Mortality Monthly Report
Computerized and compiled monthly from
daily forms by data specialist in Baku
Monthly Report/Quarterly Report/
Annual Report/End of Project Report
Compiled and written by field coordinator,
and sent to Headquarters, Donor (UNHCR),
and Baku Ministry of Health
▲
▲
UNHCR, Baku Headquarters, United States MoH, Baku
Monthly Reports Monthly Reports Monthly Reports
Q9: What indicators can you calculate from the table below? What
are the interpretations of these indicators and the data from the
table?
A9:
a) Indicators:
August 1998 September 1998
Percentage of women in clinics with PID 177/1,123 = 15.8% 145/987 = 14.7%
Percentage of PID cases associated with abortion 177/178 = 99.4% 145/152 = 95.4%
Percentage of women using a family planning method 512/1,123 = 45.6% 460/987 = 46.6%
57
Reproductive Health Epidemiology Series
b) Interpretation:
The prevalence of PID among women seen at RI clinics is
about 15% (magnitude of problem). In these 2 months, the
vast majority of PID is occurring among women who have
had recent abortions (group at high risk). About 40%–45%
of women are using family planning; therefore, a large percent
age of women may be relying on abortion as their primary
means of family planning.
Q10: Discuss the surveillance system for PID with respect to the
following attributes: simplicity, flexibility, acceptability, sensitiv
ity, predictive value positive, representativeness, and timeliness.
A10: The surveillance system for PID is judged to be relatively
simple, due to minimal levels and complexity of reporting. The
information being collected on PID is extremely simple, to the
point that additional questions are needed in order to calculate
the indicators to judge whether the system is meeting the
program objectives.
The system has proven to be sufficiently flexible in accommo
dating the changes in program priorities. In spite of changes
made to the surveillance forms, data compilation and reporting
are accomplished in a timely fashion. With appropriate training
and information, clinic health staff were able to adjust to using
the syndromic approach to PID case detection with little
difficulty.
PID surveillance among refugee women is acceptable, since
PID has been recognized as a major public health issue in this
setting. An assessment of the daily forms and monthly surveil
lance forms reveals that health workers are collecting complete
information.
The sensitivity of the PID surveillance system would be assessed
by estimating the proportion of the total number of refugee
women who truly have PID that were captured by the system.
The sensitivity of the system is judged to be poor, mostly
because of the variability in clinical presentation and resulting
imprecise syndrome diagnosis, as well as the unavailability
of gold standard diagnostic tests. Furthermore, doctors and
midwives require information and training in order to properly
apply the syndromic approach to PID detection.
58
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
In this setting, the PVP is defined as the proportion of refugee
women diagnosed as having PID who truly have the condition.
As the PVP is closely related to the clarity and specificity of the
case definition, the PVP in detecting true cases of PID is judged
to be poor.
Any selection bias introduced into the surveillance system has
the effect of decreasing its representativeness; therefore, signifi
cant subpopulations excluded by the system must be identified.
The integration of data collection in the 11 mobile reproductive
health units operating in 14 rural districts throughout the
central region of the country would add to the representative
ness of the data generated by the surveillance system.
Even after the modifications to the data collection forms,
the first two monthly summary reports were finalized and
disseminated to the key players in the health system at the
regular schedule, within one week of the end of the previous
month. Hence this system would be judged to be timely, since
the short interval between data collection and analysis allows
for early detection of trends in PID occurrence.
Q11: Describe the usefulness of this surveillance system. What have
the data from this surveillance system been used for and what
impact has the system had on reproductive health care for
refugees in Azerbaijan?
A11:
a) Magnitude of problem: the surveillance system has collected
information to estimate the magnitude of PID and abortion-
related PID in refugee/IDP women visiting the clinics.
b) Identification of high-risk groups: because the vast majority
of women with PID had recently had an abortion, it was
hypothesized that abortions were a major cause of PID
in this population.
c) Generate hypotheses and stimulate research: based on the
above hypothesis, a retrospective cohort study was undertaken
to test the hypothesis that induced abortion was a risk factor
for PID in this population.
59
Reproductive Health Epidemiology Series
d) Prioritize public health services: because of the high number of
abortions, the high rate of abortion-associated PID, and the
low contraceptive prevalence in this population, the relief
organization is working with other relief organizations and the
Ministry of Health to increase family planning services and
supplies for all women in Azerbaijan.
60
REPRODUCTIVE HEALTH EPIDEMIOLOGY
SERIES—MODULE 1
CASE STUDY II
AN EVALUATION OF THE
PERINATAL SURVEILLANCE SYSTEM
OF THE HOST COUNTRY
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
CASE STUDY II: AN EVALUATION OF THE
PERINATAL SURVEILLANCE SYSTEM OF THE
HOST COUNTRY
Learning Objectives
After completing this case study, the participant should be able to:
• Describe a perinatal (or other) surveillance system, specific to
the host country.
• Outline the elements of evaluating a surveillance system.
• Discuss the factors contributing to the public health importance
of a health event.
• Provide examples of process and outcome indicators useful in
evaluating a reproductive health surveillance system.
• Assess the usefulness of the information being collected and of
the information flow of the surveillance system as a whole.
• Evaluate the surveillance system in terms of the following
attributes: simplicity, flexibility, acceptability, sensitivity,
predictive value positive, representativeness, and timeliness.
• Make recommendations for modifying the current perinatal surveil
lance system in the host country.
63
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
CASE STUDY II: AN EVALUATION OF THE
PERINATAL SURVEILLANCE SYSTEM OF THE
HOST COUNTRY
Note to Instructors
This case study is meant to familiarize students with current data
collection systems in their country and to allow students to evaluate
and adapt the current system to meet their goals and objectives for
perinatal surveillance. Although this exercise focuses on perinatal
outcomes, this process could be easily adapted to focus on another
health outcome of interest to students. Questions in this case study
may also need to be slightly modified, depending on the level of
surveillance information currently available in the country. For example,
in countries with no formal perinatal surveillance system in existence,
students will focus more on developing a system to meet their needs.
In countries with more established systems, students will focus more
on evaluating the current system and making recommendations.
Materials needed: Before the case study, the instructor will need to
gather the relevant vital statistics and other forms currently in use in
the country, as well as a description of the vital statistics system. You
may want to ask a few students to do this in advance.
Students should break into teams of four to five participants.
65
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
AN EVALUATION OF THE PERINATAL SURVEILLANCE
SYSTEM OF THE HOST COUNTRY
Background
You are a member of your country’s Task Force on Perinatal Surveil
lance charged with evaluating current information systems regarding
perinatal health and making recommendations for any changes to
improve surveillance of perinatal health.
Q1: A successful task force for evaluating a surveillance system is
made up of stakeholders, who will be involved in planning,
implementing, and using the findings of the surveillance system
and its evaluation. Stakeholders may include members of the
local, regional, and national levels of the Ministry of Health,
other government and community leaders, public health practi
tioners, health care providers, maternal and child health pro
grammers, members of the community, and professional and
voluntary organizations. Decide who the stakeholders for a
perinatal surveillance system in your country are, and decide who
in your team will represent each stakeholder.
67
Reproductive Health Epidemiology Series
Goals and Objectives of the Perinatal
Surveillance System
The first step in either developing or evaluating a surveillance system
is to identify the goals and objectives of the surveillance system.
These goals and objectives are generally closely tied to the program
matic goals and objectives, which are monitored by the surveillance
system. For example, a programmatic goal may be to reduce perinatal
mortality due to obstructed labor, with the specific objective of
increasing the proportion of births by cesarean section. This example
leads to a surveillance system goal of being able to monitor perinatal
mortality, with three specific measurement objectives: 1) perinatal
mortality, 2) cause of perinatal mortality, and 3) mode of delivery.
Q2: What are your goals and objectives for your Perinatal Surveil
lance System? How do these relate to programmatic goals and
objectives?
Once you have clearly defined goals and objectives, you are ready to
identify the indicators you will need, and, therefore, the data elements
necessary for your surveillance system.
68
Module 1: Public Health Surveillance Applied to Reproductive Health Case Studies
Q3: For five priority objectives, list the appropriate indicators,
type of indicator, definition, and specific data source, using
the following table. You may not be able to list data sources
for all of your indicators—this will allow you to see what data
are currently available to you and what data you may need to
collect.
Objective Indicator Type of Indicator Definition Data Source
(process, outcome)
Example:
To measure C-section rate Process Number of pregnant women with Form #1201 –
mode of C-section in a specific time and Hospital delivery log
delivery geographic period
Number of deliveries in the same Vital statistics
time period and geographic area
After you have filled in the table, discuss the following questions:
a) What is your balance of process versus outcome indicators?
If you have more process indicators than outcome indicators,
you may need to re-evaluate your priorities. Are these priority
indicators really going to allow you to assess your overall goal?
b) Are there indicators for which you do not have a data source?
If so, discuss the trade-offs between creating a new data element
for the surveillance system versus dropping the indicator.
69
Reproductive Health Epidemiology Series
Describing and Evaluating the
Perinatal Surveillance System
Now that you have established goals, objectives, and indicators, and
the task force has a clear idea of what it wants to accomplish, it is
time to describe the surveillance system that will help you meet
your objectives. The next steps will largely depend on your country’s
current surveillance system. If you have a fairly well-developed
perinatal surveillance system in place, you will want to focus on
evaluating and modifying the current system to meet your needs.
If your country does not have a perinatal system in place, you will
want to focus on developing that system, incorporating as many of
the current data collection systems as possible (e.g., vital statistics,
health facility reporting).
Q4: Refer to Appendix C. Updated Guidelines for Evaluating Public
Health Surveillance Systems (28).
a) Describe the public health importance of perinatal health issues
in your country (i.e., why do you need a perinatal surveillance
system).
b) Describe the components of the perinatal surveillance system:
• Data collection
• Data analysis
• Interpretation
• Communication and dissemination
• Action
c) Draw a flowchart of the perinatal surveillance system.
d) Using the current data collection forms, are you able to collect the
necessary data for the indicators? If not, is the indicator important
enough to collect a new data element? If so, how will that data
element be collected?
70
Module 1: Public Health Surveillance Applied to Reproductive Health
Q5: Evaluate the perinatal surveillance system, including its useful
ness, attributes, and cost (refer to Appendix C. Updated Guide
lines for Evaluating Public Health Surveillance Systems).
Q6: What are the recommendations the task force will make to the
Ministry of Health for modifying the current surveillance system
or designing a new one?
71
REPRODUCTIVE HEALTH EPIDEMIOLOGY
SERIES—MODULE 1
APPENDIX A.
COMMONLY USED RATES
IN REPRODUCTIVE HEALTH
EPIDEMIOLOGY
Module 1: Public Health Surveillance Applied to Reproductive Health Appendices
APPENDIX A. COMMONLY USED RATES IN
REPRODUCTIVE HEALTH EPIDEMIOLOGY
Several epidemiologic measures can be used in reproductive health
surveillance as indicators of process and outcome. Please see indi
vidual chapters for detailed descriptions of definitions, uses, and
interpretations of topic-specific measures. The following is a list of
some of the most commonly used measures:
Rate or Ratio Indicator of Type of Calculation
Indicator
Maternal Risk of death due Impact Number of maternal deaths
mortality ratio to pregnancy occurring in a given time period
(MMR) x 100,000
Number of live births in the same time period
Maternal Risk of death due Impact Number of maternal deaths
mortality rate to pregnancy occurring in a given time period
x 1,000
Number of women of reproductive age
Proportionate Percentage of deaths Impact Number of maternal deaths in a given time period
mortality due to pregnancy x 100
Number of deaths to women of reproductive
age in same time period
Cause-specific Percentage of Impact Number of maternal deaths
proportionate maternal deaths due to a specific cause
mortality due to specific x 100
cause Total number of maternal deaths
due to all causes
Antenatal care Coverage of Outcome Number of pregnant women who are
coverage antenatal care attended at least once by trained personnel
and who deliver in the specified time period
Number of live births in the specified time period
Infant vaccination Coverage of Outcome Number of children aged 12–23 months who
coverage infant vaccination were fully vaccinated before their first birthday
Number of children aged 12–23 months
Perinatal Deaths during the Impact Number of deaths during the perinatal period
mortality rate perinatal period (from 22 weeks gestation through 7 days of life),
or other specified time period
x 1,000
Total number of births (live births plus fetal
deaths) during the same time period
75
Reproductive Health Epidemiology Series
continued
Rate or Ratio Indicator of Type of Calculation
Indicator
Neonatal Deaths of live Impact Number of live-born infants who die within
mortality rate infants during < 28 days in the specified time period
the neonatal x 1,000
period Number of live births in the same time period
Low birth weight Number of live-born Impact Number of live-born infants weighing
percentage infants weighing < 2,500 grams in the specified time period
< 2,500 grams x 100
Total number of live births (birth weight
recorded) in the same time period
STD incidence Incidence of STDs Impact Number of new cases of STDs reported
rate in a specified time period
x 1,000
Total population
STD prevalence Prevalence of STDs Impact Number of women who deliver in the specified
rate (among among pregnant time period that test positive for a particular STD
women who women
deliver) Number of women who deliver in the same
time period who were tested for that STD
Stillbirth rate Number of infants Impact Number of infants > 21 weeks/500 grams
born dead born dead in the specified time period
Total number of live births and stillbirths
in the same time period
Referral rate Proportion of Outcome Number of women with a potential or actual
women with obstetric complication moved to another site
potential or
actual obstetric Total number of women with obstetric
complications complications in the same area and within
moving from one the same time period
level of care to another
Cesarean Proportion of women Outcome Number of live-born infants delivered by
section rate who have a cesarean cesarean section in a specific time and
section in a specific geographic area
geographic area in a
given time period Number of live births in the same geographic
area and time period
76
REPRODUCTIVE HEALTH EPIDEMIOLOGY
SERIES—MODULE 1
APPENDIX B.
REPRODUCTIVE HEALTH
REFERENCE RATES
AND RATIOS
Module 1: Public Health Surveillance Applied to Reproductive Health Appendices
APPENDIX B. REPRODUCTIVE HEALTH
REFERENCE RATES AND RATIOS
Adapted from: Reproductive health in refugee settings: an inter-agency field manual.
Geneva, Switzerland: United Nations High Commissioner for Refugees; 1999. p. 110.
The following figures have been collected from various sources and
cover different time periods. They are intended to give estimates of
what may be expected in some populations. These figures indicate a
possible range and may assist with resource planning and targeting
specific programs—they are not intended to be used as definitive
baseline rates or as rates to be achieved.
Abortions 10%–15% of all pregnancies may spontaneously abort before 20 weeks gestation
90% of these will occur during the first 3 months
15%–20% of all spontaneous abortions that occur require medical interventions
Hypertensive Disorder 5%–20% of all pregnancies will develop HDP
of Pregnancy (HDP)
or Pre-eclampsia 5%–25% of all primigravida pregnancies will develop HDP
Labor and Delivery 15% of all pregnancies will require some type of intervention at delivery
Complications
3%–7% of all pregnancies will require a cesarean section
10%–15% of all women will have some degree of cephalopelvic disproportion
(higher in poorer socioeconomic populations)
10% of deliveries will involve a secondary postpartum hemorrhage
(within 24 hours of delivery)
0.1%–1.0% of deliveries will involve a secondary postpartum hemorrhage
(occurring 24 hours or more after delivery)
0.1%–0.4% deliveries will result in uterine rupture
0.25%–2.4% of all deliveries will result in some type of birth trauma to the baby
1.5% of all births will have a congenital malformation (does not include
cardiac malformations diagnosed later in neonatal period)
31% of these malformations will result in death
79
Reproductive Health Epidemiology Series
Reference Rates and Ratios for Reproductive Health Indicators
Regional Indicators
Indicator Sub-Saharan Southeast Industrialized
Africa Asia and Pacific Countries
Safe Motherhood
Crude Birth Rate (per 1,000 population) .................................. 44 26 13
Neonatal Mortality Rate (per 1,000 live births) ......................... 53 36 5
Perinatal Mortality Rate (per 1,000 live births) ......................... 83 51 8
Maternal Mortality Ratio (per 100,000 live births) ................. 971 447 31
Infant Mortality Rate (per 1,000 live births) ............................. 97 50 14
Coverage of Antenatal Care (%) ................................................ 63 65 95
Low Birth Weight Percentage (per 100 live births) .................... 16 15 6
Births attended by trained health personnel (%) ....................... 42 53 99
Institutional Deliveries (% of live births) ................................... 20 41 98
Unsafe Abortion (1,000 women 15–49) .................................... 26 15 1
Anemia in Pregnant Women (%) ............................................... 52 57 18
Coverage of Tetanus Vaccination (Pregnant Women) ................ 46 49 —
STDs, including HIV/AIDS
STD Incidence Rate (per 1,000 population) ........................... 254 160 77
AIDS Cases (per 100,000) ......................................................... 94 80 27
Family Planning
Contraceptive Prevalence Rate ................................................ 15.9 53.2 70.5
Source: United Nations Development Programme. Human Development Report. New York: United Nations; 1997.
World Health Organization. World Health Report. Geneva, Switzerland: World Health Organization; 1996.
(Adapted from: Reproductive health in refugee settings: an inter-agency field manual. Geneva, Switzerland: United
Nations High Commissioner for Refugees; 1999. p. 111.)
80
REPRODUCTIVE HEALTH EPIDEMIOLOGY
SERIES—MODULE 1
APPENDIX C.
UPDATED GUIDELINES FOR
EVALUATING PUBLIC HEALTH
SURVEILLANCE SYSTEMS
July 27, 2001 / Vol. 50 / No. RR-13
Recommendations
and
Reports
Inside: Continuing Education Examination
Updated Guidelines
for Evaluating Public Health
Surveillance Systems
Recommendations from
the Guidelines Working Group
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention (CDC)
Atlanta, GA 30333
he MMWR series of publications is published by the Epidemiology Program Office,
Centers for Disease Control and Prevention (CDC), U.S. Department of Health and
Human Services, Atlanta, GA 30333.
SUGGESTED CITATION
Centers for Disease Control and Prevention. Updated guidelines for
evaluating public health surveillance systems: recommendations from the guide
lines working group. MMWR 2001;50(No. RR-13):[inclusive page numbers].
Centers for Disease Control and Prevention .................. Jeffrey P. Koplan, M.D., M.P.H.
Director
The material in this report was prepared for publication by
Epidemiology Program Office ................................... Stephen B. Thacker, M.D., M.Sc.
Director
Division of Public Health Surveillance
and Informatics ........................................................ Daniel M. Sosin, M.D., M.P.H.
Director
National Center for HIV, STD, and TB Prevention ........ Helene D. Gayle, M.D., M.P.H.
Director
Division of HIV/AIDS Prevention —
Surveillance and Epidemiology ...................................... Robert S. Janssen, M.D.
Director
National Center for Injury Prevention and Control ................... Suzanne Binder, M.D.
Director
National Center for Chronic Disease Prevention
and Health Promotion ................................................. James S. Marks, M.D., M.P.H.
Director
Division of Adult and Community Health ............................ Gary C. Hogelin, M.P.A.
Director
National Center for Environmental Health ............... Richard J. Jackson, M.D., M.P.H.
Director
Division of Environmental Hazards and Health Effects ......... Michael A. McGeehin
Director
This report was produced as an MMWR serial publication in
Epidemiology Program Office ................................... Stephen B. Thacker, M.D., M.Sc.
Director
Office of Scientific and Health Communications ...................... John W. Ward, M.D.
Director
Editor, MMWR Series
Recommendations and Reports .................................. Suzanne M. Hewitt, M.P.A.
Managing Editor
Patricia A. McGee
Project Editor
Morie M. Higgins
Visual Information Specialist
Michele D. Renshaw and Erica R. Shaver
Information Technology Specialists
Vol. 50 / No. RR-13 MMWR i
Contents
Introduction ......................................................................................................... 1
Background ......................................................................................................... 2
Organization of This Report ........................................................................... 3
Task A. Engage the Stakeholders in the Evaluation ...................................... 4
Task B. Describe the Surveillance System to be Evaluated .......................... 4
Task C. Focus the Evaluation Design ........................................................... 11
Task D. Gather Credible Evidence Regarding the Performance
of the Surveillance System ........................................................................ 13
Task E. Justify and State Conclusions, and Make Recommendations ....... 24
Task F. Ensure Use of Evaluation Findings
and Share Lessons Learned ...................................................................... 25
Summary ........................................................................................................... 25
References ......................................................................................................... 25
Appendices ........................................................................................................ 31
Continuing Education Examination ............................................................. CE-1
ii MMWR July 27, 2001
Guidelines Working Group
CHAIRMAN ADMINISTRATIVE SUPPORT
Robert R. German, M.P.H. Dwight Westmoreland, M.P.A.
Epidemiology Program Office, CDC Epidemiology Program Office, CDC
MEMBERS
Greg Armstrong, M.D. Lisa M. Lee, Ph.D.
National Center for Infectious Diseases National Center for HIV, STD and TB
CDC Prevention, CDC
Guthrie S. Birkhead, M.D., M.P.H. Robert L. Milstein, M.P.H.
Council of State and Territorial National Center for Chronic Disease
Epidemiologists Prevention and Health Promotion, CDC
New York State Department of Health
Albany, New York Carol A. Pertowski, M.D.
National Center for Environmental Health
John M. Horan, M.D., M.P.H. CDC
National Center for Injury Prevention
and Control, CDC Michael N. Waller
National Center for Chronic Disease
Guillermo Herrera Prevention and Health Promotion, CDC
National Immunization Program, CDC
Vol. 50 / No. RR-13 MMWR iii
The following CDC staff members prepared this report:
Robert R. German, M.P.H.
Division of Public Health Surveillance and Informatics
Epidemiology Program Office
Lisa M. Lee, Ph.D.
Division of HIV/AIDS Prevention — Surveillance and Epidemiology
National Center for HIV, STD, and TB Prevention
John M. Horan, M.D., M.P.H.
Office of the Director
National Center for Injury Prevention and Control
Robert L. Milstein, M.P.H.
Office of the Director
National Center for Chronic Disease Prevention and Health Promotion
Carol A. Pertowski, M.D.
Division of Environmental Hazards and Health Effects
National Center for Environmental Health
Michael N. Waller
Division of Adult and Community Health
National Center for Chronic Disease Prevention and Health Promotion
in collaboration with
Guthrie S. Birkhead, M.D., M.P.H.
Council of State and Territorial Epidemiologists
New York State Department of Health
Albany, New York
iv MMWR July 27, 2001
Additional CDC Contributors
Office of the Director: Karen E. Harris, M.P.H.; Joseph A. Reid, Ph.D; Gladys H. Reynolds,
Ph.D., M.S.; Dixie E. Snider, Jr., M.D., M.P.H.
Agency for Toxic Substances and Disease Registry: Wendy E. Kaye, Ph.D.;
Robert Spengler, Sc.D.
Epidemiology Program Office: Vilma G. Carande-Kulis, Ph.D., M.S.; Andrew G. Dean, M.D.,
M.P.H.; Samuel L. Groseclose, D.V.M., M.P.H.; Robert A. Hahn, Ph.D., M.P.H.;
Lori Hutwagner, M.S.; Denise Koo, M.D., M.P.H.; R. Gibson Parrish, M.D., M.P.H.;
Catherine Schenck-Yglesias, M.H.S.; Daniel M. Sosin, M.D., M.P.H.; Donna F. Stroup, Ph.D.,
M.Sc.; Stephen B. Thacker, M.D., M.Sc.; G. David Williamson, Ph.D.
National Center for Birth Defects and Developmental Disabilities: Joseph Mulnaire, M.D.,
M.S.P.H.
National Center for Chronic Disease Prevention and Health Promotion: Terry F. Pechacek,
Ph.D; Nancy Stroup, Ph.D.
National Center for Environmental Health: Thomas H. Sinks, Ph.D.
National Center for Health Statistics: Jennifer H. Madans, Ph.D.
National Center for HIV, STD, and TB Prevention: James W. Buehler, M.D.;
Meade Morgan, Ph.D.
National Center for Infectious Diseases: Janet K. Nicholson, Ph.D; Jose G. Rigau-Perez,
M.D., M.P.H.
National Center for Injury Prevention and Control: Richard L. Ehrenberg, M.D.
National Immunization Program: H. Gay Allen, M.S.P.H.; Roger H. Bernier, Ph.D;
Nancy Koughan, D.O., M.P.H., M.H.A.; Sandra W. Roush, M.T., M.P.H.
National Institute for Occupational Safety and Health: Rosemary Sokas, M.D., M.O.H.
Public Health Practice Program Office: William A. Yasnoff, M.D., Ph.D.
Consultants and Contributors
Scientific Workgroup on Health-Related Quality of Life Surveillance
St. Louis University, St. Louis, Missouri
Paul Etkind, Dr.P.H., Massachusetts Department of Public Health, Jamaica Plain,
Massachusetts; Annie Fine, M.D., New York City Department of Health, New York City, New
York; Julie A. Fletcher, D.V.M, M.P.H. candidate, Emory University, Atlanta, Georgia; Daniel
J. Friedman, Ph.D., Massachusetts Department of Public Health, Boston, Massachusetts;
Richard S. Hopkins, M.D., M.S.P.H., Florida Department of Health, Tallahassee, Florida;
Steven C. MacDonald, Ph.D., M.P.H., Washington State Department of Health, Olympia,
Washington; Elroy D. Mann, D.V.M., M.Sc., Health Canada, Ottawa, Canada; S. Potjaman,
M.D., Government of Thailand, Bangkok, Thailand; Marcel E. Salive, M.D., M.P.H., National
Institutes of Health, Bethesda, Maryland.
Vol. 50 / No. RR-13 MMWR 1
Updated Guidelines
for Evaluating Public Health Surveillance Systems
Recommendations from the Guidelines Working Group
Summary
The purpose of evaluating public health surveillance systems is to ensure that
problems of public health importance are being monitored efficiently and
effectively. CDC’s Guidelines for Evaluating Surveillance Systems are being
updated to address the need for a) the integration of surveillance and health
information systems, b) the establishment of data standards, c) the electronic
exchange of health data, and d) changes in the objectives of public health
surveillance to facilitate the response of public health to emerging health threats
(e.g., new diseases). This report provides updated guidelines for evaluating
surveillance systems based on CDC’s Framework for Program Evaluation in
Public Health, research and discussion of concerns related to public health
surveillance systems, and comments received from the public health
community. The guidelines in this report describe many tasks and related
activities that can be applied to public health surveillance systems.
INTRODUCTION
In 1988, CDC published Guidelines for Evaluating Surveillance Systems (1 ) to pro
mote the best use of public health resources through the development of efficient and
effective public health surveillance systems. CDC’s Guidelines for Evaluating Surveil
lance Systems are being updated to address the need for a) the integration of surveil
lance and health information systems, b) the establishment of data standards, c) the
electronic exchange of health data, and d) changes in the objectives of public health
surveillance to facilitate the response of public health to emerging health threats (e.g.,
new diseases). For example, CDC, with the collaboration of state and local health
departments, is implementing the National Electronic Disease Surveillance System
(NEDSS) to better manage and enhance the large number of current surveillance sys
tems and allow the public health community to respond more quickly to public health
threats (e.g., outbreaks of emerging infectious diseases and bioterrorism) (2 ). When
NEDSS is completed, it will electronically integrate and link together several types of
surveillance systems with the use of standard data formats; a communications infra
structure built on principles of public health informatics; and agreements on data
access, sharing, and confidentiality. In addition, the Health Insurance Portability and
Accountability Act of 1996 (HIPAA) mandates that the United States adopt national
uniform standards for electronic transactions related to health insurance enrollment
and eligibility, health-care encounters, and health insurance claims; for identifiers for
health-care providers, payers and individuals, as well as code sets and classification
systems used in these transactions; and for security of these transactions (3 ). The elec
tronic exchange of health data inherently involves the protection of patient privacy.
2 MMWR July 27, 2001
Based on CDC’s Framework for Program Evaluation in Public Health (4 ), research
and discussion of concerns related to public health surveillance systems, and com
ments received from the public health community, this report provides updated guide
lines for evaluating public health surveillance systems.
BACKGROUND
Public health surveillance is the ongoing, systematic collection, analysis, interpreta
tion, and dissemination of data regarding a health-related event for use in public health
action to reduce morbidity and mortality and to improve health (5–7 ). Data dissemi
nated by a public health surveillance system can be used for immediate public health
action, program planning and evaluation, and formulating research hypotheses. For
example, data from a public health surveillance system can be used to
• guide immediate action for cases of public health importance;
• measure the burden of a disease (or other health-related event), including
changes in related factors, the identification of populations at high risk, and the
identification of new or emerging health concerns;
• monitor trends in the burden of a disease (or other health-related event), including
the detection of epidemics (outbreaks) and pandemics;
• guide the planning, implementation, and evaluation of programs to prevent and
control disease, injury, or adverse exposure;
• evaluate public policy;
• detect changes in health practices and the effects of these changes;
• prioritize the allocation of health resources;
• describe the clinical course of disease; and
• provide a basis for epidemiologic research.
Public health surveillance activities are generally authorized by legislators and car
ried out by public health officials. Public health surveillance systems have been devel
oped to address a range of public health needs. In addition, public health information
systems have been defined to include a variety of data sources essential to public health
action and are often used for surveillance (8 ). These systems vary from a simple sys
tem collecting data from a single source, to electronic systems that receive data from
many sources in multiple formats, to complex surveys. The number and variety of
systems will likely increase with advances in electronic data interchange and integra
tion of data, which will also heighten the importance of patient privacy, data confiden
tiality, and system security. Appropriate institutions/agencies/scientific officials should
be consulted with any projects regarding pubic health surveillance.
Variety might also increase with the range of health-related events under surveil
lance. In these guidelines, the term “health-related event” refers to any subject related
to a public health surveillance system. For example, a health-related event could
include infectious, chronic, or zoonotic diseases; injuries; exposures to toxic substances;
health promoting or damaging behaviors; and other surveilled events associated with
public health action.
Vol. 50 / No. RR-13 MMWR 3
The purpose of evaluating public health surveillance systems is to ensure that prob
lems of public health importance are being monitored efficiently and effectively. Public
health surveillance systems should be evaluated periodically, and the evaluation should
include recommendations for improving quality, efficiency, and usefulness. The goal of
these guidelines is to organize the evaluation of a public health surveillance system.
Broad topics are outlined into which program-specific qualities can be integrated. Evalu
ation of a public health surveillance system focuses on how well the system operates to
meet its purpose and objectives.
The evaluation of public health surveillance systems should involve an assessment
of system attributes, including simplicity, flexibility, data quality, acceptability, sensitiv
ity, predictive value positive, representativeness, timeliness, and stability. With the con
tinuing advancement of technology and the importance of information architecture
and related concerns, inherent in these attributes are certain public health informatics
concerns for public health surveillance systems. These concerns include comparable
hardware and software, standard user interface, standard data format and coding,
appropriate quality checks, and adherence to confidentiality and security standards
(9 ). Because public health surveillance systems vary in methods, scope, purpose, and
objectives, attributes that are important to one system might be less important to
another. A public health surveillance system should emphasize those attributes that
are most important for the objectives of the system. Efforts to improve certain attributes
(e.g., the ability of a public health surveillance system to detect a health-related event
[sensitivity]) might detract from other attributes (e.g., simplicity or timeliness). An evalu
ation of the public health surveillance system must therefore consider those attributes
that are of the highest priority for a given system and its objectives. Considering the
attributes that are of the highest priority, the guidelines in this report describe many
tasks and related activities that can be applied in the evaluation of public health surveil
lance systems, with the understanding that all activities under the tasks might not be
appropriate for all systems.
Organization of This Report
This report begins with descriptions of each of the tasks involved in evaluating a
public health surveillance system. These tasks are adapted from the steps in program
evaluation in the Framework for Program Evaluation in Public Health (4 ) as well as
from the elements in the original guidelines for evaluating surveillance systems (1 ).
The report concludes with a summary statement regarding evaluating surveillance sys
tems. A checklist that can be detached or photocopied and used when the evaluation is
implemented is also included (Appendix A).
To assess the quality of the evaluation activities, relevant standards are provided for
each of the tasks for evaluating a public health surveillance system (Appendix B). These
standards are adapted from the standards for effective evaluation (i.e., utility, feasibil
ity, propriety, and accuracy) in the Framework for Program Evaluation in Public Health
(4 ). Because all activities under the evaluation tasks might not be appropriate for all
systems, only those standards that are appropriate to an evaluation should be used.
4 MMWR July 27, 2001
Task A. Engage the Stakeholders in the Evaluation
Stakeholders can provide input to ensure that the evaluation of a public health
surveillance system addresses appropriate questions and assesses pertinent attributes
and that its findings will be acceptable and useful. In that context, we define stakehold
ers as those persons or organizations who use data for the promotion of healthy
lifestyles and the prevention and control of disease, injury, or adverse exposure. Those
stakeholders who might be interested in defining questions to be addressed by the
surveillance system evaluation and subsequently using the findings from it are public
health practitioners; health-care providers; data providers and users; representatives
of affected communities; governments at the local, state, and federal levels; and pro
fessional and private nonprofit organizations.
Task B. Describe the Surveillance System to be Evaluated
Activities
• Describe the public health importance of the health-related event under
surveillance.
• Describe the purpose and operation of the system.
• Describe the resources used to operate the system.
Discussion
To construct a balanced and reliable description of the system, multiple sources of
information might be needed. The description of the system can be improved by con
sulting with a variety of persons involved with the system and by checking reported
descriptions of the system against direct observation.
B.1. Describe the Public Health Importance of the Health-Related Event
Under Surveillance
Definition. The public health importance of a health-related event and the need to
have that event under surveillance can be described in several ways. Health-related
events that affect many persons or that require large expenditures of resources are of
public health importance. However, health-related events that affect few persons might
also be important, especially if the events cluster in time and place (e.g., a limited out
break of a severe disease). In other instances, public concerns might focus attention on
a particular health-related event, creating or heightening the importance of an evalua
tion. Diseases that are now rare because of successful control measures might be per
ceived as unimportant, but their level of importance should be assessed as a possible
sentinel health-related event or for their potential to reemerge. Finally, the public health
importance of a health-related event is influenced by its level of preventability (10 ).
Vol. 50 / No. RR-13 MMWR 5
Measures. Parameters for measuring the importance of a health-related event—
and therefore the public health surveillance system with which it is monitored—can
include (7 )
• indices of frequency (e.g., the total number of cases and/or deaths; incidence
rates, prevalence, and/or mortality rates); and summary measures of population
health status (e.g., quality-adjusted life years [QALYS]);
• indices of severity (e.g., bed-disability days, case-fatality ratio, and hospitalization
rates and/or disability rates);
• disparities or inequities associated with the health-related event;
• costs associated with the health-related event;
• preventability (10 );
• potential clinical course in the absence of an intervention (e.g., vaccinations)
(11,12 ); and
• public interest.
Efforts have been made to provide summary measures of population health status
that can be used to make comparative assessments of the health needs of populations
(13 ). Perhaps the best known of these measures are QALYs, years of healthy life (YHLs),
and disability-adjusted life years (DALYs). Based on attributes that represent health
status and life expectancy, QALYs, YHLs, and DALYs provide one-dimensional mea
sures of overall health. In addition, attempts have been made to quantify the public
health importance of various diseases and other health-related events. In a study that
describes such an approach, a score was used that takes into account age-specific
morbidity and mortality rates as well as health-care costs (14 ). Another study used a
model that ranks public health concerns according to size, urgency, severity of the prob
lem, economic loss, effect on others, effectiveness, propriety, economics, acceptability,
legality of solutions, and availability of resources (15 ).
Preventability can be defined at several levels, including primary prevention (pre
venting the occurrence of disease or other health-related event), secondary prevention
(early detection and intervention with the aim of reversing, halting, or at least retarding
the progress of a condition), and tertiary prevention (minimizing the effects of disease
and disability among persons already ill). For infectious diseases, preventability can
also be described as reducing the secondary attack rate or the number of cases trans
mitted to contacts of the primary case. From the perspective of surveillance, prevent
ability reflects the potential for effective public health intervention at any of these levels.
B.2. Describe the Purpose and Operation of the Surveillance System
Methods. Methods for describing the operation of the public health surveillance
system include
• List the purpose and objectives of the system.
• Describe the planned uses of the data from the system.
• Describe the health-related event under surveillance, including the case definition
for each specific condition.
6 MMWR July 27, 2001
• Cite any legal authority for the data collection.
• Describe where in the organization(s) the system resides, including the context
(e.g., the political, administrative, geographic, or social climate) in which the
system evaluation will be done.
• Describe the level of integration with other systems, if appropriate.
• Draw a flow chart of the system.
• Describe the components of the system. For example
— What is the population under surveillance?
— What is the period of time of the data collection?
— What data are collected and how are they collected?
— What are the reporting sources of data for the system?
— How are the system’s data managed (e.g., the transfer, entry, editing, storage,
and back up of data)? Does the system comply with applicable standards for
data formats and coding schemes? If not, why?
— How are the system’s data analyzed and disseminated?
— What policies and procedures are in place to ensure patient privacy, data
confidentiality, and system security? What is the policy and procedure for
releasing data? Do these procedures comply with applicable federal and state
statutes and regulations? If not, why?
— Does the system comply with an applicable records management program?
For example, are the system’s records properly archived and/or disposed of?
Discussion. The purpose of the system indicates why the system exists, whereas its
objectives relate to how the data are used for public health action. The objectives of a
public health surveillance system, for example, might address immediate public health
action, program planning and evaluation, and formation of research hypotheses (see
Background). The purpose and objectives of the system, including the planned uses of
its data, establish a frame of reference for evaluating specific components.
A public health surveillance system is dependent on a clear case definition for the
health-related event under surveillance (7 ). The case definition of a health-related event
can include clinical manifestations (i.e., symptoms), laboratory results, epidemiologic
information (e.g., person, place, and time), and/or specified behaviors, as well as levels
of certainty (e.g., confirmed/definite, probable/presumptive, or possible/suspected). The
use of a standard case definition increases the specificity of reporting and improves the
comparability of the health-related event reported from different sources of data,
including geographic areas. Case definitions might exist for a variety of health-related
events under surveillance, including diseases, injuries, adverse exposures, and risk fac
tor or protective behaviors. For example, in the United States, CDC and the Council of
State and Territorial Epidemiologists (CSTE) have agreed on standard case definitions
for selected infectious diseases (16 ). In addition, CSTE publishes Position Papers that
discuss and define a variety of health-related events (17 ). When possible, a public health
surveillance system should use an established case definition, and if it does not, an
explanation should be provided.
Vol. 50 / No. RR-13 MMWR 7
The evaluation should assess how well the public health surveillance system is inte
grated with other surveillance and health information systems (e.g., data exchange
and sharing in multiple formats, and transformation of data). Streamlining related sys
tems into an integrated public health surveillance network enables individual systems
to meet specific data collection needs while avoiding the duplication of effort and lack
of standardization that can arise from independent systems (18 ). An integrated system
can address comorbidity concerns (e.g., persons infected with human immunodefi
ciency virus and Mycobacterium tuberculosis ); identify previously unrecognized risk
factors; and provide the means for monitoring additional outcomes from a health-
related event. When CDC’s NEDSS is completed, it will electronically integrate and link
together several types of surveillance activities and facilitate more accurate and timely
reporting of disease information to CDC and state and local health departments (2 ).
CSTE has organized professional discussion among practicing public health epide
miologists at state and federal public health agencies. CSTE has also proposed a
national public health surveillance system to serve as a basis for local and state public
health agencies to a) prioritize surveillance and health information activities and
b) advocate for necessary resources for public health agencies at all levels (19 ). This
national public health system would be a conceptual framework and virtual surveil
lance system that incorporates both existing and new surveillance systems for health-
related events and their determinants.
Listing the discrete steps that are taken in processing the health-event reports by
the system and then depicting these steps in a flow chart is often useful. An example of
a simplified flow chart for a generic public health surveillance system is included in this
report (Figure 1). The mandates and business processes of the lead agency that oper
ates the system and the participation of other agencies could be included in this chart.
The architecture and data flow of the system can also be depicted in the chart (20,21 ).
A chart of architecture and data flow should be sufficiently detailed to explain all of the
functions of the system, including average times between steps and data transfers.
The description of the components of the public health surveillance system could
include discussions related to public health informatics concerns, including compa
rable hardware and software, standard user interface, standard data format and cod
ing, appropriate quality checks, and adherence to confidentiality and security standards
(9 ). For example, comparable hardware and software, standard user interface, and
standard data format and coding facilitate efficient data exchange, and a set of com
mon data elements are important for effectively matching data within the system or to
other systems.
To document the information needs of public health, CDC, in collaboration with
state and local health departments, is developing the Public Health Conceptual Data
Model to a) establish data standards for public health, including data definitions, com
ponent structures (e.g., for complex data types), code values, and data use; b) collabo
rate with national health informatics standard-setting bodies to define standards for
the exchange of information among public health agencies and health-care providers;
and c) construct computerized information systems that conform to established data
and data interchange standards for use in the management of data relevant to public
health (22 ). In addition, the description of the system’s data management might ad
dress who is editing the data, how and at what levels the data are edited, and what
checks are in place to ensure data quality.
8 MMWR July 27, 2001
In response to HIPAA mandates, various standard development organizations and
terminology and coding groups are working collaboratively to harmonize their sepa
rate systems (23 ). For example, both the Accredited Standards Committee X12 (24 ),
which has dealt principally with standards for health insurance transactions, and Health
Level Seven (HL7) (25 ), which has dealt with standards for clinical messaging and
exchange of clinical information with health-care organizations (e.g., hospitals), have
collaborated on a standardized approach for providing supplementary information to
support health-care claims (26 ). In the area of classification and coding of diseases and
other medical terms, the National Library of Medicine has traditionally provided the
Unified Medical Language System, a metathesaurus for clinical coding systems that
allows terms in one coding system to be mapped to another (27 ). The passage of
FIGURE 1. Simplified flow chart for a generic surveillance system
Occurrence of health- An infectious, chronic, or zoonotic disease;
related event injury; adverse exposure; risk factor or
protective behavior; or other surveilled event
associated with public health action
Case
confirmation Identification by whom and how
Audiences
Reporting sources
Physicians Reporting process
Feedback and dissemination of information for public health action
Health-care providers • Data entry and editing possible
Veterinarians
Survey respondents • Assurance of confidentiality
Laboratories
Hospitals
Health-care organizations
Schools
Vital records
Other
Data recipients
Data management
• Collection
Primary level • Entry
(e.g., county health • Editing
department) • Storage
• Analysis
• Report generation
Secondary level • Report dissemination
(e.g., state health • Assurance of confidentiality
department)
Tertiary level
(e.g., Federal agency)
Vol. 50 / No. RR-13 MMWR 9
HIPAA and the anticipated adoption of standards for electronic medical records have
increased efforts directed toward the integration of clinical terminologies (23 ) (e.g., the
merge of the College of American Pathologists’ Systematized Nomenclature of Medi
cine [SNOMED®] [28 ] and the British Read Codes, the National Health Service thesau
rus of health-care terms in Great Britain).
The data analysis description might indicate who analyzes the data, how they are
analyzed, and how often. This description could also address how the system ensures
that appropriate scientific methods are used to analyze the data.
The public health surveillance system should operate in a manner that allows effec
tive dissemination of health data so that decision makers at all levels can readily under
stand the implications of the information (7 ). Options for disseminating data and/or
information from the system include electronic data interchange; public-use data files;
the Internet; press releases; newsletters; bulletins; annual and other types of reports;
publication in scientific, peer-reviewed journals; and poster and oral presentations,
including those at individual, community, and professional meetings. The audiences
for health data and information can include public health practitioners, health-care pro
viders, members of affected communities, professional and voluntary organizations,
policymakers, the press, and the general public.
In conducting surveillance, public health agencies are authorized to collect personal
health data about persons and thus have an obligation to protect against inappropriate
use or release of that data. The protection of patient privacy (recognition of a person’s
right not to share information about him or herself), data confidentiality (assurance of
authorized data sharing), and system security (assurance of authorized system access)
is essential to maintaining the credibility of any surveillance system. This protection
must ensure that data in a surveillance system regarding a person’s health status are
shared only with authorized persons. Physical, administrative, operational, and com
puter safeguards for securing the system and protecting its data must allow authorized
access while denying access by unauthorized users.
A related concern in protecting health data is data release, including procedures for
releasing record-level data; aggregate tabular data; and data in computer-based, inter
active query systems. Even though personal identifiers are removed before data are
released, the removal of these identifiers might not be a sufficient safeguard for shar
ing health data. For example, the inclusion of demographic information in a line-listed
data file for a small number of cases could lead to indirect identification of a person
even though personal identifiers were not provided. In the United States, CDC and
CSTE have negotiated a policy for the release of data from the National Notifiable
Disease Surveillance System (29 ) to facilitate its use for public health while preserving
the confidentiality of the data (30 ). The policy is being evaluated for revision by CDC
and CSTE.
Standards for the privacy of individually identifiable health data have been pro
posed in response to HIPAA (3 ). A model state law has been composed to address
privacy, confidentiality, and security concerns arising from the acquisition, use, disclo
sure, and storage of health information by public health agencies at the state and local
levels (31 ). In addition, the Federal Committee on Statistical Methodology’s series of
Statistical Policy Working Papers includes reviews of statistical methods used by
federal agencies and their contractors that release statistical tables or microdata files
10 MMWR July 27, 2001
that are collected from persons, businesses, or other units under a pledge of confiden
tiality. These working papers contain basic statistical methods to limit disclosure (e.g.,
rules for data suppression to protect privacy and to minimize mistaken inferences from
small numbers) and provide recommendations for improving disclosure limitation
practices (32 ).
A public health surveillance system might be legally required to participate in a
records management program. Records can consist of a variety of materials (e.g., com
pleted forms, electronic files, documents, and reports) that are connected with operat
ing the surveillance system. The proper management of these records prevents a “loss
of memory” or “cluttered memory” for the agency that operates the system, and
enhances the system’s ability to meet its objectives.
B.3. Describe the Resources Used to Operate the Surveillance System
Definition. In this report, the methods for assessing resources cover only those
resources directly required to operate a public health surveillance system. These
resources are sometimes referred to as “direct costs” and include the personnel and
financial resources expended in operating the system.
Methods. In describing these resources consider the following:
• Funding source(s): Specify the source of funding for the surveillance system. In the
United States, public health surveillance often results from a collaboration among
federal, state, and local governments.
• Personnel requirements: Estimate the time it takes to operate the system, including
the collection, editing, analysis, and dissemination of data (e.g., person-time
expended per year of operation). These measures can be converted to dollar
estimates by multiplying the person-time by appropriate salary and benefit costs.
• Other resources: Determine the cost of other resources, including travel, training,
supplies, computer and other equipment, and related services (e.g., mail, telephone,
computer support, Internet connections, laboratory support, and hardware and
software maintenance).
When appropriate, the description of the system’s resources should consider all
levels of the public health system, from the local health-care provider to municipal,
county, state, and federal health agencies. Resource estimation for public health sur
veillance systems have been implemented in Vermont (Table 1) and Kentucky (Table 2).
Resource Estimation in Vermont. Two methods of collecting public health surveil
lance data in Vermont were compared (33 ). The passive system was already in place
and consisted of unsolicited reports of notifiable diseases to the district offices or state
health department. The active system was implemented in a probability sample of
physician practices. Each week, a health department employee called these practitio
ners to solicit reports of selected notifiable diseases.
In comparing the two systems, an attempt was made to estimate their costs. The
estimates of direct expenses were computed for the public health surveillance systems
(Table 1).
Resource Estimation in Kentucky. Another example of resource estimation was pro
vided by an assessment of the costs of a public health surveillance system involving
the active solicitation of case reports of type A hepatitis in Kentucky (Table 2) (34 ). The
resources that were invested into the direct operation of the system in 1983 were for
Vol. 50 / No. RR-13 MMWR 11
TABLE 1. Comparison of estimated expenses for health department active and passive
surveillance systems — Vermont, June 1, 1980–May 31, 1981*
Surveillance system
†
Expenses Active Passive§
Paper $114 $80
Mailing 185 48
Telephone 1,947 175
Personnel
Secretary 3,000 2,000
Public health nurse 14,025 0
Total $19,271 $2,303
*Vogt RL, LaRue D, Klaucke DN, Jillson DA. Comparison of an active and passive surveillance
system of primary care providers for hepatitis, measles, rubella, and salmonellosis in Vermont.
Am J Public Health 1983;73:795–7.
† Active surveillance — weekly calls were made from health departments requesting reports.
§ Passive surveillance — provider-initiated reporting.
personnel and telephone expenses and were estimated at $3,764 and $535, respec
tively. Nine more cases were found through this system than would have been found
through the passive surveillance system, and an estimated seven hepatitis cases were
prevented through administering prophylaxis to the contacts of the nine case-patients.
Discussion. This approach to assessing resources includes only those personnel
and material resources required for the operation of surveillance and excludes a broader
definition of costs that might be considered in a more comprehensive evaluation. For
example, the assessment of resources could include the estimation of indirect costs
(e.g., follow-up laboratory tests) and costs of secondary data sources (e.g., vital statis
tics or survey data).
The assessment of the system’s operational resources should not be done in isola
tion of the program or initiative that relies on the public health surveillance system. A
more formal economic evaluation of the system (i.e., judging costs relative to benefits)
could be included with the resource description. Estimating the effect of the system on
decision making, treatment, care, prevention, education, and/or research might be pos
sible (35,36 ). For some surveillance systems, however, a more realistic approach would
be to judge costs based on the objectives and usefulness of the system.
Task C. Focus the Evaluation Design
Definition
The direction and process of the evaluation must be focused to ensure that time and
resources are used as efficiently as possible.
Methods
Focusing the evaluation design for a public health surveillance system involves
• determining the specific purpose of the evaluation (e.g., a change in practice);
• identifying stakeholders (Task A) who will receive the findings and recommen
dations of the evaluation (i.e., the intended users);
12 MMWR July 27, 2001
TABLE 2. Costs of a 22-week active surveillance program for hepatitis A —
Kentucky, 1983*
Activity Estimated costs
Central office
Surveillance
Personnel $3,764
Telephone 535
Local health offices†
Contact tracing
Personnel 647
Telephone 149
Travel 31
Contact prophylaxis
Personnel 469
Immune serum globulin 21
Total $5,616
* Hinds MW, Skaggs JW, Bergeisen GH. Benefit-cost analysis of active surveillance of primary
care physicians for hepatitis A. Am J Public Health 1985;75:176–7.
†
Costs of tracing and providing prophylaxis to 38 additional active surveillance-associated
contacts of persons with hepatitis A.
• considering what will be done with the information generated from the evaluation
(i.e., the intended uses);
• specifying the questions that will be answered by the evaluation; and
• determining standards for assessing the performance of the system.
Discussion
Depending on the specific purpose of the evaluation, its design could be straightfor
ward or complex. An effective evaluation design is contingent upon a) its specific pur
pose being understood by all of the stakeholders in the evaluation and b) persons who
need to know the findings and recommendations of the design being committed to
using the information generated from it. In addition, when multiple stakeholders are
involved, agreements that clarify roles and responsibilities might need to be estab
lished among those who are implementing the evaluation.
Standards for assessing how the public health surveillance system performs estab
lish what the system must accomplish to be considered successful in meeting its objec
tives. These standards specify, for example, what levels of usefulness and simplicity
are relevant for the system, given its objectives. Approaches to setting useful stan
dards for assessing the system’s performance include a review of current scientific
literature on the health-related event under surveillance and/or consultation with
appropriate specialists, including users of the data.
Vol. 50 / No. RR-13 MMWR 13
Task D. Gather Credible Evidence Regarding the Performance
of the Surveillance System
Activities
• Indicate the level of usefulness by describing the actions taken as a result of
analysis and interpretation of the data from the public health surveillance system.
Characterize the entities that have used the data to make decisions and take
actions. List other anticipated uses of the data.
• Describe each of the following system attributes:
— Simplicity
— Flexibility
— Data quality
— Acceptability
— Sensitivity
— Predictive value positive
— Representativeness
— Timeliness
— Stability
Discussion
Public health informatics concerns for public health surveillance systems (see Task
B.2, Discussion) can be addressed in the evidence gathered regarding the performance
of the system. Evidence of the system’s performance must be viewed as credible. For
example, the gathered evidence must be reliable, valid, and informative for its intended
use. Many potential sources of evidence regarding the system’s performance exist,
including consultations with physicians, epidemiologists, statisticians, behavioral sci
entists, public health practitioners, laboratory directors, program managers, data pro
viders, and data users.
D.1. Indicate the Level of Usefulness
Definition. A public health surveillance system is useful if it contributes to the pre
vention and control of adverse health-related events, including an improved under
standing of the public health implications of such events. A public health surveillance
system can also be useful if it helps to determine that an adverse health-related event
previously thought to be unimportant is actually important. In addition, data from a
surveillance system can be useful in contributing to performance measures (37 ),
including health indicators (38 ) that are used in needs assessments and accountability
systems.
14 MMWR July 27, 2001
Methods. An assessment of the usefulness of a public health surveillance system
should begin with a review of the objectives of the system and should consider the
system’s effect on policy decisions and disease-control programs. Depending on the
objectives of a particular surveillance system, the system might be considered useful if
it satisfactorily addresses at least one of the following questions. Does the system
• detect diseases, injuries, or adverse or protective exposures of public importance
in a timely way to permit accurate diagnosis or identification, prevention or
treatment, and handling of contacts when appropriate?
• provide estimates of the magnitude of morbidity and mortality related to the
health-related event under surveillance, including the identification of factors
associated with the event?
• detect trends that signal changes in the occurrence of disease, injury, or adverse
or protective exposure, including detection of epidemics (or outbreaks)?
• permit assessment of the effect of prevention and control programs?
• lead to improved clinical, behavioral, social, policy, or environmental practices?
or
• stimulate research intended to lead to prevention or control?
A survey of persons who use data from the system might be helpful in gathering
evidence regarding the usefulness of the system. The survey could be done either for
mally with standard methodology or informally.
Discussion. Usefulness might be affected by all the attributes of a public health
surveillance system (see Task D.2, Describe Each System Attribute). For example,
increased sensitivity might afford a greater opportunity for identifying outbreaks and
understanding the natural course of an adverse health-related event in the population
under surveillance. Improved timeliness allows control and prevention activities to be
initiated earlier. Increased predictive value positive enables public health officials to
more accurately focus resources for control and prevention measures. A representa
tive surveillance system will better characterize the epidemiologic characteristics of a
health-related event in a defined population. Public health surveillance systems that
are simple, flexible, acceptable, and stable will likely be more complete and useful for
public health action.
D.2. Describe Each System Attribute
D.2.a. Simplicity
Definition. The simplicity of a public health surveillance system refers to both its
structure and ease of operation. Surveillance systems should be as simple as possible
while still meeting their objectives.
Methods. A chart describing the flow of data and the lines of response in a surveil
lance system can help assess the simplicity or complexity of a surveillance system. A
simplified flow chart for a generic surveillance system is included in this report (Figure 1).
The following measures (see Task B.2) might be considered in evaluating the sim
plicity of a system:
Vol. 50 / No. RR-13 MMWR 15
• amount and type of data necessary to establish that the health-related event has
occurred (i.e., the case definition has been met);
• amount and type of other data on cases (e.g., demographic, behavioral, and
exposure information for the health-related event);
• number of organizations involved in receiving case reports;
• level of integration with other systems;
• method of collecting the data, including number and types of reporting sources,
and time spent on collecting data;
• amount of follow-up that is necessary to update data on the case;
• method of managing the data, including time spent on transferring, entering,
editing, storing, and backing up data;
• methods for analyzing and disseminating the data, including time spent on
preparing the data for dissemination;
• staff training requirements; and
• time spent on maintaining the system.
Discussion. Thinking of the simplicity of a public health surveillance system from
the design perspective might be useful. An example of a system that is simple in design
is one with a case definition that is easy to apply (i.e., the case is easily ascertained) and
in which the person identifying the case will also be the one analyzing and using the
information. A more complex system might involve some of the following:
• special or follow-up laboratory tests to confirm the case;
• investigation of the case, including telephone contact or a home visit by public
health personnel to collect detailed information;
• multiple levels of reporting (e.g., with the National Notifiable Diseases
Surveillance System, case reports might start with the health-care provider who
makes the diagnosis and pass through county and state health departments
before going to CDC [29 ]); and
• integration of related systems whereby special training is required to collect and/
or interpret data.
Simplicity is closely related to acceptance and timeliness. Simplicity also affects the
amount of resources required to operate the system.
D.2.b. Flexibility
Definition. A flexible public health surveillance system can adapt to changing infor
mation needs or operating conditions with little additional time, personnel, or allocated
funds. Flexible systems can accommodate, for example, new health-related events,
changes in case definitions or technology, and variations in funding or reporting
sources. In addition, systems that use standard data formats (e.g., in electronic data
interchange) can be easily integrated with other systems and thus might be considered
flexible.
16 MMWR July 27, 2001
Methods. Flexibility is probably best evaluated retrospectively by observing how a
system has responded to a new demand. An important characteristic of CDC’s Behav
ioral Risk Factor Surveillance System (BRFSS) is its flexibility (39 ). Conducted in col
laboration with state health departments, BRFSS is an ongoing sample survey that
gathers and reports state-level prevalence data on health behaviors related to the lead
ing preventable causes of death as well as data on preventive health practices. The
system permits states to add questions of their own design to the BRFSS questionnaire
but is uniform enough to allow state-to-state comparisons for certain questions. These
state-specific questions can address emergent and locally important health concerns.
In addition, states can stratify their BRFSS samples to estimate prevalence data for
regions or counties within their respective states.
Discussion. Unless efforts have been made to adapt the public health surveillance
system to another disease (or other health-related event), a revised case definition,
additional data sources, new information technology, or changes in funding, assessing
the flexibility of that system might be difficult. In the absence of practical experience,
the design and workings of a system can be examined. Simpler systems might be more
flexible (i.e., fewer components will need to be modified when adapting the system for
a change in information needs or operating conditions).
D.2.c. Data Quality
Definition. Data quality reflects the completeness and validity of the data recorded
in the public health surveillance system.
Methods. Examining the percentage of “unknown” or “blank” responses to items
on surveillance forms is a straightforward and easy measure of data quality. Data of
high quality will have low percentages of such responses. However, a full assessment
of the completeness and validity of the system’s data might require a special study.
Data values recorded in the surveillance system can be compared to “true” values
through, for example, a review of sampled data (40 ), a special record linkage (41 ), or
patient interview (42 ). In addition, the calculation of sensitivity (Task D.2.e) and predic
tive value positive (Task D.2.f) for the system’s data fields might be useful in assessing
data quality.
Quality of data is influenced by the performance of the screening and diagnostic
tests (i.e., the case definition) for the health-related event, the clarity of hardcopy or
electronic surveillance forms, the quality of training and supervision of persons who
complete these surveillance forms, and the care exercised in data management. A
review of these facets of a public health surveillance system provides an indirect mea
sure of data quality.
Discussion. Most surveillance systems rely on more than simple case counts. Data
commonly collected include the demographic characteristics of affected persons,
details about the health-related event, and the presence or absence of potential risk
factors. The quality of these data depends on their completeness and validity.
The acceptability (see Task D.2.d) and representativeness (Task D.2.g) of a public
health surveillance system are related to data quality. With data of high quality, the
system can be accepted by those who participate in it. In addition, the system can
accurately represent the health-related event under surveillance.
Vol. 50 / No. RR-13 MMWR 17
D.2.d. Acceptability
Definition. Acceptability reflects the willingness of persons and organizations to
participate in the surveillance system.
Methods. Acceptability refers to the willingness of persons in the sponsoring agency
that operates the system and persons outside the sponsoring agency (e.g., persons
who are asked to report data) to use the system. To assess acceptability, the points of
interaction between the system and its participants must be considered (Figure 1),
including persons with the health-related event and those reporting cases.
Quantitative measures of acceptability can include
• subject or agency participation rate (if it is high, how quickly it was achieved);
• interview completion rates and question refusal rates (if the system involves
interviews);
• completeness of report forms;
• physician, laboratory, or hospital/facility reporting rate; and
• timeliness of data reporting.
Some of these measures might be obtained from a review of surveillance report
forms, whereas others would require special studies or surveys.
Discussion. Acceptability is a largely subjective attribute that encompasses the will
ingness of persons on whom the public health surveillance system depends to provide
accurate, consistent, complete, and timely data. Some factors influencing the accept
ability of a particular system are
• the public health importance of the health-related event;
• acknowledgment by the system of the person’s contribution;
• dissemination of aggregate data back to reporting sources and interested parties;
• responsiveness of the system to suggestions or comments;
• burden on time relative to available time;
• ease and cost of data reporting;
• federal and state statutory assurance of privacy and confidentiality;
• the ability of the system to protect privacy and confidentiality;
• federal and state statute requirements for data collection and case reporting; and
• participation from the community in which the system operates.
D.2.e. Sensitivity
Definition. The sensitivity of a surveillance system can be considered on two levels.
First, at the level of case reporting, sensitivity refers to the proportion of cases of a
disease (or other health-related event) detected by the surveillance system (43 ).
Second, sensitivity can refer to the ability to detect outbreaks, including the ability to
monitor changes in the number of cases over time.
18 MMWR July 27, 2001
Methods. The measurement of the sensitivity of a public health surveillance system
is affected by the likelihood that
• certain diseases or other health-related events are occurring in the population
under surveillance;
• cases of certain health-related events are under medical care, receive laboratory
testing, or are otherwise coming to the attention of institutions subject to
reporting requirements;
• the health-related events will be diagnosed/identified, reflecting the skill of health-
care providers and the sensitivity of screening and diagnostic tests (i.e., the case
definition); and
• the case will be reported to the system.
These situations can be extended by analogy to public health surveillance systems
that do not fit the traditional disease care-provider model. For example, the sensitivity
of a telephone-based surveillance system of morbidity or risk factors is affected by
• the number of persons who have telephones, who are at home when the call is
placed, and who agree to participate;
• the ability of persons to understand the questions and correctly identify their
status; and
• the willingness of respondents to report their status.
The extent to which these situations are explored depends on the system and on the
resources available for assessing sensitivity. The primary emphasis in assessing sensi
tivity — assuming that most reported cases are correctly classified — is to estimate the
proportion of the total number of cases in the population under surveillance being
detected by the system, represented by A/(A+C) in this report (Table 3).
Surveillance of vaccine-preventable diseases provides an example of where the
detection of outbreaks is a critical concern (44 ). Approaches that have been recom
mended for improving sensitivity of reporting vaccine-preventable diseases might be
TABLE 3. Calculation of sensitivity* and predictive value positive† for a surveillance
system
Detected Condition present
by surveillance Yes No
True False
Yes positive positive
A B A+B
False True
No negative negative
C D C+D
A+C B+D Total
* Sensitivity = A/(A+C)
†
Predictive value positive (PVP) = A/(A+B)
Vol. 50 / No. RR-13 MMWR 19
applicable to other health-related events (44 ). For example, the sensitivity of a system
might be improved by
• conducting active surveillance (i.e., contacting all providers and institutions
responsible for reporting cases);
• using external standards (or other surveillance indicators) to monitor the quality
of case reporting;
• identifying imported cases;
• tracking the number of cases of suspected disease that are reported, investigated,
and ruled out as cases;
• monitoring the diagnostic effort (e.g., tracking submission of laboratory requests
for diagnostic testing); and
• monitoring the circulation of the agent (e.g., virus or bacterium) that causes the
disease.
The capacity for a public health surveillance system to detect outbreaks (or other
changes in incidence and prevalence) might be enhanced substantially if detailed diag
nostic tests are included in the system. For example, the use of molecular subtyping in
the surveillance of Escherichia coli O157:H7 infections in Minnesota enabled the sur
veillance system to detect outbreaks that would otherwise have gone unrecognized (45 ).
The measurement of the sensitivity of the surveillance system (Table 3) requires
a) collection of or access to data usually external to the system to determine the true
frequency of the condition in the population under surveillance (46 ) and b) validation
of the data collected by the system. Examples of data sources used to assess the sensi
tivity of health information or public health surveillance systems include medical records
(47,48 ) and registries (49,50 ). In addition, sensitivity can be assessed through estima
tions of the total cases in the population under surveillance by using capture-recapture
techniques (51,52 ).
To adequately assess the sensitivity of the public health surveillance system, calcu
lating more than one measurement of the attribute might be necessary. For example,
sensitivity could be determined for the system’s data fields, for each data source or for
combinations of data sources (48 ), for specific conditions under surveillance (53 ), or
for each of several years (54 ). The use of a Venn diagram might help depict measure
ments of sensitivity for combinations of the system’s data sources (55 ).
Discussion. A literature review can be helpful in determining sensitivity measure
ments for a public health surveillance system (56 ). The assessment of the sensitivity of
each data source, including combinations of data sources, can determine if the elimina
tion of a current data source or if the addition of a new data source would affect the
overall surveillance results (48 ).
A public health surveillance system that does not have high sensitivity can still be
useful in monitoring trends as long as the sensitivity remains reasonably constant over
time. Questions concerning sensitivity in surveillance systems most commonly arise
when changes in the occurrence of a health-related event are noted. Changes in sensi
tivity can be precipitated by some circumstances (e.g., heightened awareness of a
health-related event, introduction of new diagnostic tests, and changes in the method
of conducting surveillance). A search for such “artifacts” is often an initial step in out
break investigations.
20 MMWR July 27, 2001
D.2.f. Predictive Value Positive
Definition. Predictive value positive (PVP) is the proportion of reported cases that
actually have the health-related event under surveillance (43 ).
Methods. The assessment of sensitivity and of PVP provide different perspectives
regarding how well the system is operating. Depending on the objectives of the public
health surveillance system, assessing PVP whenever sensitivity has been assessed
might be necessary (47–50,53 ). In this report, PVP is represented by A/(A+B) (Table 3).
In assessing PVP, primary emphasis is placed on the confirmation of cases reported
through the surveillance system. The effect of PVP on the use of public health resources
can be considered on two levels. At the level of case detection, PVP affects the amount
of resources used for case investigations. For example, in some states, every reported
case of type A hepatitis is promptly investigated by a public health nurse, and contacts
at risk are referred for prophylactic treatment. A surveillance system with low PVP, and
therefore frequent “false-positive” case reports, would lead to misdirected resources.
At the level of outbreak (or epidemic) detection, a high rate of erroneous case
reports might trigger an inappropriate outbreak investigation. Therefore, the propor
tion of epidemics identified by the surveillance system that are true epidemics can be
used to assess this attribute.
Calculating the PVP might require that records be kept of investigations prompted
by information obtained from the public health surveillance system. At the level of case
detection, a record of the number of case investigations completed and the proportion
of reported persons who actually had the health-related event under surveillance would
allow the calculation of the PVP. At the level of outbreak detection, the review of per
sonnel activity reports, travel records, and telephone logbooks might enable the
assessment of PVP. For some surveillance systems, however, a review of data external
to the system (e.g., medical records) might be necessary to confirm cases to calculate
PVP. Examples of data sources used to assess the PVP of health information or public
health surveillance systems include medical records (48,57 ), registries (49,58 ), and
death certificates (59 ).
To assess the PVP of the system adequately, calculating more than one measure
ment of the attribute might be necessary. For example, PVP could be determined for
the system’s data fields, for each data source or combinations of data sources (48 ), or
for specific health-related events (49 ).
Discussion. PVP is important because a low value means that noncases might be
investigated, and outbreaks might be identified that are not true but are instead arti
facts of the public health surveillance system (e.g., a “pseudo-outbreak”). False-positive
reports can lead to unnecessary interventions, and falsely detected outbreaks can lead
to costly investigations and undue concern in the population under surveillance. A
public health surveillance system with a high PVP will lead to fewer misdirected resources.
The PVP reflects the sensitivity and specificity of the case definition (i.e., the screen
ing and diagnostic tests for the health-related event) and the prevalence of the health-
related event in the population under surveillance. The PVP can improve with increasing
specificity of the case definition. In addition, good communication between the per
sons who report cases and the receiving agency can lead to an improved PVP.
D.2.g. Representativeness
Definition. A public health surveillance system that is representative accurately
describes the occurrence of a health-related event over time and its distribution in the
population by place and person.
Vol. 50 / No. RR-13 MMWR 21
Methods. Representativeness is assessed by comparing the characteristics of
reported events to all such actual events. Although the latter information is generally
not known, some judgment of the representativeness of surveillance data is possible,
based on knowledge of
• characteristics of the population, including, age, socioeconomic status, access to
health care, and geographic location (60 );
• clinical course of the disease or other health-related event (e.g., latency period,
mode of transmission, and outcome [e.g., death, hospitalization, or disability]);
• prevailing medical practices (e.g., sites performing diagnostic tests and
physician-referral patterns) (33,61 ); and
• multiple sources of data (e.g., mortality rates for comparison with incidence data
and laboratory reports for comparison with physician reports).
Representativeness can be examined through special studies that seek to identify a
sample of all cases. For example, the representativeness of a regional injury surveil
lance system was examined using a systematic sample of injured persons (62 ). The
study examined statistical measures of population variables (e.g., age, sex, residence,
nature of injury, and hospital admission) and concluded that the differences in the dis
tribution of injuries in the system’s database and their distribution in the sampled data
should not affect the ability of the surveillance system to achieve its objectives.
For many health-related events under surveillance, the proper analysis and inter
pretation of the data require the calculation of rates. The denominators for these rate
calculations are often obtained from a completely separate data system maintained by
another agency (e.g., the United States Bureau of the Census in collaboration with state
governments [63 ]). The choice of an appropriate denominator for the rate calculation
should be given careful consideration to ensure an accurate representation of the health-
related event over time and by place and person. For example, numerators and
denominators must be comparable across categories (e.g., race [64 ], age, residence,
and/or time period), and the source for the denominator should be consistent over time
when measuring trends in rates. In addition, consideration should be given to the
selection of the standard population for the adjustment of rates (65 ).
Discussion. To generalize findings from surveillance data to the population at large,
the data from a public health surveillance system should accurately reflect the charac
teristics of the health-related event under surveillance. These characteristics generally
relate to time, place, and person. An important result of evaluating the representative
ness of a surveillance system is the identification of population subgroups that might
be systematically excluded from the reporting system through inadequate methods of
monitoring them. This evaluation process enables appropriate modification of data
collection procedures and more accurate projection of incidence of the health-related
event in the target population (66 ).
For certain health-related events, the accurate description of the event over time
involves targeting appropriate points in a broad spectrum of exposure and the result
ant disease or condition. In the surveillance of cardiovascular diseases, for example, it
might be useful to distinguish between preexposure conditions (e.g., tobacco use poli
cies and social norms), the exposure (e.g., tobacco use, diet, exercise, stress, and
genetics), a pre-symptomatic phase (e.g., cholesterol and homocysteine levels), early-
staged disease (e.g., abnormal stress test), late-staged disease (e.g., angina and acute
22 MMWR July 27, 2001
myocardial infarction), and death from the disease. The measurement of risk factor
behaviors (e.g., tobacco use) might enable the monitoring of important aspects in the
development of a disease or other health-related event.
Because surveillance data are used to identify groups at high risk and to target and
evaluate interventions, being aware of the strengths and limitations of the system’s
data is important. Errors and bias can be introduced into the system at any stage (67 ).
For example, case ascertainment (or selection) bias can result from changes in report
ing practices over time or from differences in reporting practices by geographic loca
tion or by health-care providers. Differential reporting among population subgroups
can result in misleading conclusions about the health-related event under surveillance.
D.2.h. Timeliness
Definition. Timeliness reflects the speed between steps in a public health surveil
lance system.
Methods. A simplified example of the steps in a public health surveillance system is
included in this report (Figure 2). The time interval linking any two of these steps can be
examined. The interval usually considered first is the amount of time between the
onset of a health-related event and the reporting of that event to the public health
agency responsible for instituting control and prevention measures. Factors affecting
the time involved during this interval can include the patient’s recognition of symp
toms, the patient’s acquisition of medical care, the attending physician’s diagnosis or
FIGURE 2. Simplified example of steps in a surveillance system
Occurrence of health-related event
Health-related event recognized
by reporting source
Health-related event reported
to responsible public health agency
Control and prevention activities Feedback to stakeholders
Vol. 50 / No. RR-13 MMWR 23
submission of a laboratory test, the laboratory reporting test results back to the physi
cian and/or to a public health agency, and the physician reporting the event to a public
health agency. Another aspect of timeliness is the time required for the identification of
trends, outbreaks, or the effect of control and prevention measures. Factors that influ
ence the identification process can include the severity and communicability of the
health-related event, staffing of the responsible public health agency, and communica
tion among involved health agencies and organizations. The most relevant time inter
val might vary with the type of health-related event under surveillance. With acute or
infectious diseases, for example, the interval from the onset of symptoms or the date of
exposure might be used. With chronic diseases, it might be more useful to look at
elapsed time from diagnosis rather than from the date of symptom onset.
Discussion. The timeliness of a public health surveillance system should be evalu
ated in terms of availability of information for control of a health-related event, includ
ing immediate control efforts, prevention of continued exposure, or program planning.
The need for rapidity of response in a surveillance system depends on the nature of the
health-related event under surveillance and the objectives of that system. A study of a
public health surveillance system for Shigella infections, for example, indicated that
the typical case of shigellosis was brought to the attention of health officials 11 days
after onset of symptoms — a period sufficient for the occurrence of secondary and
tertiary transmission. This example indicates that the level of timeliness was not satis
factory for effective disease control (68 ). However, when a long period of latency
occurs between exposure and appearance of disease, the rapid identification of cases
of illness might not be as important as the rapid availability of exposure data to provide
a basis for interrupting and preventing exposures that lead to disease. For example,
children with elevated blood lead levels and no clinically apparent illness are at risk for
adverse health-related events. CDC recommends that follow-up of asymptomatic chil
dren with elevated blood lead levels include educational activities regarding lead poi
soning prevention and investigation and remediation of sources of lead exposure (69 ).
In addition, surveillance data are being used by public health agencies to track progress
toward national and state health objectives (38,70 ).
The increasing use of electronic data collection from reporting sources (e.g., an elec
tronic laboratory-based surveillance system) and via the Internet (a web-based sys
tem), as well as the increasing use of electronic data interchange by surveillance
systems, might promote timeliness (6,29,71,72 ).
D.2.i. Stability
Definition. Stability refers to the reliability (i.e., the ability to collect, manage, and
provide data properly without failure) and availability (the ability to be operational when
it is needed) of the public health surveillance system.
Methods. Measures of the system’s stability can include
• the number of unscheduled outages and down times for the system’s computer;
• the costs involved with any repair of the system’s computer, including parts,
service, and amount of time required for the repair;
• the percentage of time the system is operating fully;
• the desired and actual amount of time required for the system to collect or receive
data;
24 MMWR July 27, 2001
• the desired and actual amount of time required for the system to manage the data,
including transfer, entry, editing, storage, and back-up of data; and
• the desired and actual amount of time required for the system to release data.
Discussion. A lack of dedicated resources might affect the stability of a public health
surveillance system. For example, workforce shortages can threaten reliability and avail
ability. Yet, regardless of the health-related event being monitored, a stable perfor
mance is crucial to the viability of the surveillance system. Unreliable and unavailable
surveillance systems can delay or prevent necessary public health action.
A more formal assessment of the system’s stability could be made through model
ing procedures (73 ). However, a more useful approach might involve assessing stabil
ity based on the purpose and objectives of the system.
Task E. Justify and State Conclusions, and Make
Recommendations
Conclusions from the evaluation can be justified through appropriate analysis, syn
thesis, interpretation, and judgement of the gathered evidence regarding the perfor
mance of the public health surveillance system (Task D). Because the stakeholders (Task A)
must agree that the conclusions are justified before they will use findings from the
evaluation with confidence, the gathered evidence should be linked to their relevant
standards for assessing the system’s performance (Task C). In addition, the conclusions
should state whether the surveillance system is addressing an important public health
problem (Task B.1) and is meeting its objectives (Task B.2).
Recommendations should address the modification and/or continuation of the pub
lic health surveillance system. Before recommending modifications to a system, the
evaluation should consider the interdependence of the system’s costs (Task B.3) and
attributes (Task D.2). Strengthening one system attribute could adversely affect
another attribute of a higher priority. Efforts to improve sensitivity, PVP, representative
ness, timeliness, and stability can increase the cost of a surveillance system, although
savings in efficiency with computer technology (e.g., electronic reporting) might offset
some of these costs. As sensitivity and PVP approach 100%, a surveillance system is
more likely to be representative of the population with the event under surveillance.
However, as sensitivity increases, PVP might decrease. Efforts to increase sensitivity
and PVP might increase the complexity of a surveillance system — potentially decreas
ing its acceptability, timeliness, and flexibility. In a study comparing health-department–
initiated (active) surveillance and provider-initiated (passive) surveillance, for example,
the active surveillance did not improve timeliness, despite increased sensitivity (61 ). In
addition, the recommendations can address concerns about ethical obligations in
operating the system (74 ).
In some instances, conclusions from the evaluation indicate that the most appropri
ate recommendation is to discontinue the public health surveillance system; however,
this type of recommendation should be considered carefully before it is issued. The
cost of renewing a system that has been discontinued could be substantially greater
than the cost of maintaining it. The stakeholders in the evaluation should consider
relevant public health and other consequences of discontinuing a surveillance system.
Vol. 50 / No. RR-13 MMWR 25
Task F. Ensure Use of Evaluation Findings and Share
Lessons Learned
Deliberate effort is needed to ensure that the findings from a public health surveil
lance system evaluation are used and disseminated appropriately. When the evalua
tion design is focused (Task C), the stakeholders (Task A) can comment on decisions
that might affect the likelihood of gathering credible evidence regarding the system’s
performance. During the implementation of the evaluation (Tasks D and E), considering
how potential findings (particularly negative findings) could affect decisions made about
the surveillance system might be necessary. When conclusions from the evaluation
and recommendations are made (Task E), follow-up might be necessary to remind
intended users of their planned uses and to prevent lessons learned from becoming
lost or ignored.
Strategies for communicating the findings from the evaluation and recommenda
tions should be tailored to relevant audiences, including persons who provided data
used for the evaluation. In the public health community, for example, a formal written
report or oral presentation might be important but not necessarily the only means of
communicating findings and recommendations from the evaluation to relevant audi
ences. Several examples of formal written reports of surveillance evaluations have
been included in peer-reviewed journals (51,53,57,59,75 ).
SUMMARY
The guidelines in this report address evaluations of public health surveillance
systems. However, these guidelines could also be applied to several systems, including
health information systems used for public health action, surveillance systems that are
pilot tested, and information systems at individual hospitals or health-care centers.
Additional information can also be useful for planning, establishing, as well as effi
ciently and effectively monitoring a public health surveillance system (6–7 ).
To promote the best use of public health resources, all public health surveillance
systems should be evaluated periodically. No perfect system exists; however, and
trade-offs must always be made. Each system is unique and must balance benefit ver
sus personnel, resources, and cost allocated to each of its components if the system is
to achieve its intended purpose and objectives.
The appropriate evaluation of public health surveillance systems becomes para
mount as these systems adapt to revised case definitions, new health-related events,
new information technology (including standards for data collection and sharing), cur
rent requirements for protecting patient privacy, data confidentiality, and system secu
rity. The goal of this report has been to make the evaluation process inclusive, explicit,
and objective. Yet, this report has presented guidelines — not absolutes — for the evalu
ation of public health surveillance systems. Progress in surveillance theory, technol
ogy, and practice continues to occur, and guidelines for evaluating a surveillance system
will necessarily evolve.
References
1. CDC. Guidelines for evaluating surveillance systems. MMWR 1988;37(No. S-5).
2. Health Information and Surveillance System Board. Integration Project: National Electronic
Disease Surveillance System. Available at <http://www.cdc.gov/od/hissb/act_int.htm>.
Accessed May 7, 2001.
26 MMWR July 27, 2001
3. Department of Health and Human Services. Administrative simplification. Available at <http:/
/aspe.os.dhhs.gov/admnsimp/Index.htm>. Accessed May 7, 2001.
4. CDC. Framework for program evaluation in public health. MMWR 1999;48(RR-11).
5. Thacker SB. Historical development. In: Teutsch SM, Churchill RE, eds. Principles and practice
of public health surveillance, 2nd ed. New York, NY: Oxford University Press, 2000.
6. Buehler JW. Surveillance. In: Rothman KJ, Greenland S. Modern epidemiology, 2nd ed.
Philadelphia, PA: Lippencott-Raven, 1998.
7. Teutsch SM, Thacker SB. Planning a public health surveillance system. Epidemiological
Bulletin: Pan American Health Organization 1995;16:1–6.
8. Thacker SB, Stroup DF. Future directions for comprehensive public health surveillance and
health information systems in the United States. Am J Epidemiol 1994;140:383–97.
9. Yasnoff WA, O’Carroll PW, Koo D, Linkins RW, Kilbourne EM. Public health informatics:
improving and transforming public health in the information age. J Public Health Management
Practice 2000;6:63–71.
10. CDC. An ounce of prevention: what are the returns? 2nd ed. Atlanta, GA: Department of
Health and Human Services, CDC, 1999.
11. CDC. Impact of vaccines universally recommended for children—United States, 1990–1998.
MMWR 1999;48:243–8.
12. Hinman AR, Koplan JP. Pertussis and pertussis vaccine: reanalysis of benefits, risks, and
costs. JAMA 1984;251:3109–13.
13. Institute of Medicine, Committee on Summary Measures of Population Health. In: Field MJ,
Gold MR, eds. Summarizing population health: directions for the development and application
of population metrics. Washington, DC: National Academy Press, 1998. Available at <http://
books.nap.edu/index.html. Accessed February 2001.
14. Dean AG, West DJ, Weir WM. Measuring loss of life, health, and income due to disease and
injury. Public Health Rep 1982;97:38–47.
15. Vilnius D, Dandoy S. A priority rating system for public health programs. Public Health Rep
1990;105:463–70.
16. CDC. Case definitions for infectious conditions under public health surveillance. MMWR
1997;46(RR-10).
17. Council of State and Territorial Epidemiologists. Position statements. Available at <http://
www.cste.org/position_statements.htm >. Accessed May 7, 2001.
18. Morris G, Snider D, Katz M. Integrating public health information and surveillance systems.
J Public Health Management Practice 1996;2:24–7.
19. Meriwether RA. Blueprint for a National Public Health Surveillance System for the 21st century.
J Public Health Management Practice 1996;2(4):16–23.
20. Zachman JA. A framework for information systems architecture. IBM Systems J 1987;26(3).
21. Sowa JF, Zachman JA. Extending and formalizing the framework for information systems
architecture. IBM Systems J 1992;31(3).
22. Health Information and Surveillance System Board. Public Health Conceptual Data Model
(PHCDM). Available at <http://www.cdc.gov/od/hissb/docs/phcdm.htm >. Accessed May 7, 2001.
23. Koo D, Parrish RG II. The changing health-care information infrastructure in the United States:
opportunities for a new approach to public health surveillance. In: Teutsch SM, Churchill RE,
eds. Principles and practice of public health surveillance, 2nd ed. New York, NY: Oxford
University Press, 2000.
24. Data Interchange Standards Association. X12 Standards, release 4020. Alexandria, VA:
Accredited Standards Committee X12, 1998. Available at <http://www.disa.org>. Accessed
May 7, 2001.
25. Health Level Seven. Available at <http://www.hl7.org >. Accessed May 7, 2001.
26. Health Care Financing Administration. The Health Insurance Portability and Accountability
Act of 1996 (HIPAA). Available at <http://www.hcfa.gov/hipaa/hipaahm.htm>. Accessed
May 7, 2001.
Vol. 50 / No. RR-13 MMWR 27
27. Humphreys BL, Lindberg DAB, Schoolman HM, Barnett GO. The unified medical language
system: an informatics research collaboration. JAMIA 1998;5:1–11.
28. College of American Pathologists. Systematized nomenclature of human and veterinary
medicine (SNOMED®), version 3.5. Northfield, IL: College of American Pathologists. Available
at <http://www.snomed.org/snomed35_txt.html>. Accessed May 7, 2001.
29. Koo D, Wetterhall SF. History and current status of the National Notifiable Diseases Surveillance
System. J Public Health Management Practice 1996;2:4–10.
30. Council of State and Territorial Epidemiologists. Data release guidelines of the Council of
State and Territorial Epidemiologists for the National Public Health Surveillance System.
Atlanta, GA: Council of State and Territorial Epidemiologists, June 1996. Available at <http:/
/www.cste.org/>. Accessed February 2001.
31. Privacy Law Advisory Committee, Model State Public Health Privacy Project. Model state
public health privacy act. Washington, DC: Georgetown University Law Center, 1999. Available
at <http://www.critpath.org/msphpa/privacy.htm>. Accessed May 7, 2001.
32. Federal Committee on Statistical Methodology, Subcommittee on Disclosure Limitation
Methodology. Statistical Policy Working Paper 22: report on statistical disclosure limitation
methodology. Washington, DC: Office of Management and Budget, May 1994 (PB94-165305).
Available at <http://www.ntis.gov/>. Accessed May 7, 2001.
33. Vogt RL, LaRue D, Klaucke DN, Jillson DA. Comparison of an active and passive surveillance
system of primary care providers for hepatitis, measles, rubella, and salmonellosis in Vermont.
Am J Public Health 1983;73:795–7.
34. Hinds MW, Skaggs JW, Bergeisen GH. Benefit-cost analysis of active surveillance of primary
care physicians for hepatitis A. Am J Public Health 1985;75:176–7.
35. Morris S, Gray A, Noone A, Wiseman M, Jathanna S. The costs and effectiveness of
surveillance of communicable disease: a case study of HIV and AIDS in England and Wales.
J Public Health Med 1996;18:415–22.
36. Haddix AC, Teutsch SM, Shaffer PA, Duñet, DO, eds. Prevention effectiveness: a guide to
decision analysis and economic evaluation. New York, NY: Oxford University Press, 1996.
37. Department of Health and Human Services, Health Resources and Services Administration.
Title V (Title V IS) information system web site. Accessed at <http://www.mchdata.net/>.
Accessed May 7, 2001.
38. US Department of Health and Human Services. Healthy people 2010 (conference ed, 2 vols).
Washington, DC: US Department of Health and Human Services, 2000.
39. Behavioral Risk Factor Surveillance System. Available at <http://www.cdc.gov/nccdphp/brfss/>.
Accessed May 7, 2001.
40. Klevens RM, Fleming PL, Neal JJ, Mode of Transmission Validation Study Group. Is there
really a heterosexual AIDS epidemic in the United States? Findings from a multisite validation
study, 1992-1995. Am J Epidemiol 1999;149:75–84.
41. Fox J, Stahlsmith L, Remington P, Tymus T, Hargarten S. The Wisconsin firearm-related
injury surveillance system. Am J Prev Med 1998;15:101–8.
42. Phillips-Howard PA, Mitchell J, Bradley DJ. Validation of malaria surveillance case reports:
implications for studies of malaria risk. J Epidemiol Community Health 1990;44:155–61.
43. Weinstein MC, Fineberg HV. Clinical decision analysis. Philadelphia, PA: W.B. Saunders,
1980:84–94.
44. CDC. Manual for the surveillance of vaccine-preventable diseases. Atlanta, GA: Department
of Health and Human Services, CDC, September 1999.
45. Bender JB, Hedberg CW, Besser JM, MacDonald KL, Osterholm MT. Surveillance for
Escherichia coli 0157:H7 infections in Minnesota by molecular subtyping. N Engl J Med
1997;337:388–94.
46. Chandra Sekar C, Deming WE. On a method of estimating birth and death rates and the
extent of registration. J Am Stat Assoc 1949;44:101–15.
28 MMWR July 27, 2001
47. Emori TG, Edwards JR, Culver DH, et al. Accuracy of reporting nosocomial infections in
intensive-care–unit patients to the National Nosocomial Infections Surveillance System: a
pilot study. Infect Control Hosp Epidemiol 1998;19:308–16.
48. Johnson RL, Gabella BA, Gerhart KA, McCray J, Menconi JC, Whiteneck GG. Evaluating
sources of traumatic spinal cord injury surveillance data in Colorado. Am J Epidemiol
1997;146:266–72.
49. Watkins ML, Edmonds L, McClearn A, Mullins L, Mulinare J, Khoury M. The surveillance of
birth defects: the usefulness of the revised US standard birth certificate. Am J Public Health
1996;86:731–4.
50. Payne SMC, Seage GR III, Oddleifson S, et al. Using administratively collected hospital
discharge data for AIDS surveillance. Ann Epidemiol 1995;5:337–46.
51. Van Tuinen M, Crosby A. Missouri firearm-related injury surveillance system. Am J Prev Med
1998;15:67–74.
52. Hook EB, Regal RR. The value of capture-recapture methods even for apparent exhaustive
surveys. Am J Epidemiol 1992;135:1060–7.
53. Gazarian M, Williams K, Elliott E, et al. Evaluation of a national surveillance unit. Arch Dis
Child 1999;80:21–7.
54. Singh J, Foster SO. Sensitivity of poliomyelitis surveillance in India. Indian J Pediatr
1998;35:311–5.
55. Last JM, Abramson JH, Friedman GD, Porta M, Spasoff RA, Thuriaux M, eds. A dictionary of
epidemiology, 3rd ed. New York, NY: Oxford University Press, 1995:173–4.
56. German RR. Sensitivity and predictive value positive measurements for public health
surveillance systems. Epidemiology 2000;11:720–7.
57. Hedegaard H, Wake M, Hoffman R. Firearm-related injury surveillance in Colorado. Am J
Prev Med 1998;15(3S):38–45.
58. Mähönen M, Salomaa V, Brommels M, et al. The validity of hospital discharge register data
on coronary heart disease in Finland. Eur J Epidemiol 1997;13:403–15.
59. LeMier M, Cummings P, Keck D, Stehr-Green J, Ikeda R, Saltzman L. Washington state gunshot-
wound surveillance system. Am J Prev Med 1998;15(3S):92–100.
60. Kimball AM, Thacker SB, Levy ME. Shigella surveillance in a large metropolitan area:
assessment of a passive reporting system. Am J Public Health 1980;70:164–6.
61. Thacker SB, Redmond S, Rothenberg RB, Spitz SB, Choi K, White MC. A controlled trial of
disease surveillance strategies. Am J Prev Med 1986;2:345–50.
62. McClure RJ, Burnside J. The Australian Capital Territory Injury Surveillance and Prevention
Project. Acad Emerg Med 1995;2:529–34.
63. US Bureau of the Census. Federal-State Cooperative Program for Population Estimates:
Operational Guidelines. Washington, DC: US Bureau of the Census, July 1992. Available at
<http://www.census.gov/population/www/fscpp/fscpp.html>. Accessed February 2001.
64. Hahn RA, Stroup DF. Race and ethnicity in public health surveillance: criteria for the scientific
use of social categories. Public Health Rep 1994;109:7–15.
65. CDC. New population standard for age-adjusting death rates. MMWR 1999;48:126–7.
66. Alter MJ, Mares A, Hadler SC, Maynard JE. The effect of underreporting on the apparent
incidence and epidemiology of acute viral hepatitis. Am J Epidemiol 1987;125:133–9.
67. Romaguera RA, German RR, Klaucke DN. Evaluating public health surveillance. In: Teutsch
SM, Churchill RE, eds. Principles and practice of public health surveillance, 2nd ed. New
York, NY: Oxford University Press, 2000.
68. Rosenberg ML. Shigella surveillance in the United States, 1975. J Infect Dis 1977;136:458–60.
69. CDC. Preventing lead poisoning in young children: a statement by the Centers for Disease
Control—October 1991. Atlanta, GA: Department of Health and Human Services, Public Health
Service, CDC, 1991.
Vol. 50 / No. RR-13 MMWR 29
70. Maiese DR. Data challenges and successes with healthy people. Hyattsville, MD: Department
of Health and Human Services, CDC, National Center for Health Statistics. Healthy People
2000 Statistics and Surveillance 1998. (no. 9).
71. Effler P, Ching-Lee M, Bogard A, Ieong M-C, Nekomoto T, Jernigan D. Statewide system of
electronic notifiable disease reporting from clinical laboratories: comparing automated
reporting with conventional methods. JAMA 1999;282:1845–50.
72. Yokoe DS, Subramanyan GS, Nardell E, Sharnprapai S, McCray E, Platt R. Supplementing
tuberculosis surveillance with automated data from health maintenance organizations. Emerg
Infect Dis 1999:5:779–87.
73. Johnson AM Jr, Malek M. Survey of software tools for evaluating reliability, availability, and
serviceability. Association for Computing Machinery Surveys 1988;20(4).
74. Snider DE, Stroup DF. Ethical issues. In: Teutsch SM, Churchill RE, eds. Principles and practice
of public health surveillance, 2nd ed. New York, NY: Oxford University Press, 2000.
75. Singleton JA, Lloyd JC, Mootrey GT, Salive ME, Chen RT, VAERS Working Group. An overview
of the vaccine adverse event reporting system (VAERS) as a surveillance system. Vaccine
1999;17:2908–17.
30 MMWR July 27, 2001
Vol. 50 / No. RR-13 MMWR 31
Appendix A.
Checklist for Evaluating Public Health Surveillance Systems
Tasks for evaluating a surveillance system* Page(s) in this report
Task A. Engage the stakeholders in the evaluation 4
Task B. Describe the surveillance system to be evaluated 4–11
1. Describe the public health importance of the health-related event under surveillance 4– 5
a. Indices of frequency
b. Indices of severity
c. Disparities or inequities associated with the health-related event
d. Costs associated with the health-related event
e. Preventability
f. Potential future clinical course in the absence of an intervention
g. Public interest
2. Describe the purpose and operation of the surveillance system 5–10
a. Purpose and objectives of the system
b. Planned uses of the data from the system
c. Health-related event under surveillance, including case definition
d. Legal authority for data collection
e. The system resides where in organization(s)
f. Level of integration with other systems, if appropriate
g. Flow chart of system
h. Components of system
1) Population under surveillance
2) Period of time of data collection
3) Data collection
4) Reporting sources of data
5) Data management
6) Data analysis and dissemination
7) Patient privacy, data confidentiality, and system security
8) Records management program
3. Describe the resources used to operate the surveillance system 10–11
a. Funding source(s)
b. Personnel requirements
c. Other resources
Task C. Focus the evaluation design 11–12
1. Determine the specific purpose of the evaluation
2. Identify stakeholders who will receive the findings and recommendations of the evaluation
3. Consider what will be done with the information generated from the evaluation
4. Specify the questions that will be answered by the evaluation
5. Determine standards for assessing the performance of the system
Task D. Gather credible evidence regarding the performance of the surveillance system 13–24
1. Indicate the level of usefulness 13–14
2. Describe each system attribute 14–24
a. Simplicity
b. Flexibility
c. Data quality
d. Acceptability
e. Sensitivity
f. Predictive value positive
g. Representativeness
h. Timeliness
i. Stability
Task E. Justify and state conclusions, and make recommendations 24
Task F. Ensure use of evaluation findings and share lessons learned 25
* Adapted from Framework for Program Evaluation in Public Health [CDC. Framework for program evaluation in
public health. MMWR 1999;48(RR-11)] and the original guidelines [CDC. Guidelines for evaluating surveillance
systems. MMWR 1988;37(No. S-5)].
32 MMWR July 27, 2001
Appendix B.
Cross-reference of Tasks and Relevant Standards
Tasks for evaluating a surveillance system* Relevant standards†
Task A. Engage the stakeholders Stakeholder identification. Persons involved in or
in the evaluation. affected by the evaluation should be identified so that
their needs can be addressed.
Evaluator credibility. The persons conducting the
evaluation should be trustworthy and competent in
performing the evaluation to ensure that findings from
the evaluation achieve maximum credibility and
acceptance.
Formal agreements. If applicable, all principal
parties involved in an evaluation should agree in
writing to their obligations (i.e., what is to be done,
how, by whom, and when) so that each party must
adhere to the conditions of the agreement or
renegotiate them.
Rights of human subjects. The evaluation should
be designed and conducted in a manner that respects
and protects the rights and welfare of human subjects.
Human interactions. Evaluators should interact
respectfully with other persons associated with an
evaluation so that participants are not threatened or
harmed.
Conflict of interest. Conflict of interest should be
handled openly and honestly so that the evaluation
processes and results are not compromised.
Metaevaluation. The evaluation should be forma
tively and summatively evaluated against these and
other pertinent standards to guide its conduct
appropriately and, on completion, to enable close
examination of its strengths and weaknesses by
stakeholders.
Task B. Describe the surveillance system Complete and fair assessment. The evaluation
to be evaluated. should be complete and fair in its examination and
recording of strengths and weaknesses of the system
so that strengths can be enhanced and problem areas
addressed.
System documentation. The system being
evaluated should be documented clearly and
accurately.
Context analysis. The context in which the system
exists should be examined in enough detail to identify
probable influences on the system.
Metaevaluation. The evaluation should be
formatively and summatively evaluated against these
and other pertinent standards to guide its conduct
appropriately and, on completion, to enable close
examination of its strengths and weaknesses by
stakeholders.
Task C. Focus the evaluation design. Evaluation impact. Evaluations should be planned,
conducted, and reported in ways that encourage
follow-through by stakeholders to increase the
likelihood of the evaluation being used.
Vol. 50 / No. RR-13 MMWR 33
Appendix B. — Continued
Cross-reference of Tasks and Relevant Standards
Tasks for evaluating a surveillance system* Relevant standards†
Task C. (Continued ) Focus the evaluation design. Practical procedures. Evaluation procedures should
be practical while needed information is being
obtained to keep disruptions to a minimum.
Political viability. During the planning and
conducting of the evaluation, consideration should be
given to the varied positions of interest groups so that
their cooperation can be obtained and possible
attempts by any group to curtail evaluation operations
or to bias or misapply the results can be averted or
counteracted.
Cost-effectiveness. The evaluation should be
efficient and produce valuable information to justify
expended resources.
Service orientation. The evaluation should be
designed to assist organizations in addressing and
serving effectively the needs of the targeted
participants.
Complete and fair assessment. The evaluation
should be complete and fair in its examination and
recording of strengths and weaknesses of the system
so that strengths can be enhanced and problem areas
addressed.
Fiscal responsibility. The evaluator’s allocation and
expenditure of resources should reflect sound
accountability procedures by being prudent and
ethically responsible so that expenditures are
accountable and appropriate.
Described purpose and procedures. The purpose
and procedures of the evaluation should be monitored
and described in enough detail to identify and assess
them. The purpose of evaluating a surveillance
system is to promote the best use of public health
resources by ensuring that only important problems
are under surveillance and that surveillance systems
operate efficiently.
Metaevaluation. The evaluation should be
formatively and summatively evaluated against these
and other pertinent standards to guide its conduct
appropriately and, on completion, to enable close
examination of its strengths and weaknesses by
stakeholders.
Task D. Gather credible evidence Information scope and selection. Information
regarding the performance of the collected should address pertinent questions
surveillance system. regarding the system and be responsive to the needs
and interests of clients and other specified
stakeholders.
Defensible information sources. Sources of
information used in the system evaluation should be
described in enough detail to assess the adequacy of
the information.
34 MMWR July 27, 2001
Appendix B. — Continued
Cross-reference of Tasks and Relevant Standards
Tasks for evaluating a surveillance system* Relevant standards†
Task D. (Continued ) Gather credible evidence Valid information. Information-gathering
regarding the performance of the procedures should be developed and implemented to
surveillance system. ensure a valid interpretation for the intended use.
Reliable information. Information-gathering
procedures should be developed and implemented to
ensure sufficiently reliable information for the
intended use.
Systematic information. Information collected,
processed, and reported in an evaluation should be
systematically reviewed and any errors corrected.
Metaevaluation. The evaluation should be
formatively and summatively evaluated against these
and other pertinent standards to guide its conduct
appropriately and, on completion, to enable close
examination of its strengths and weaknesses by
stakeholders.
Task E. Justify and state conclusions, Values identification. The perspectives, procedures,
and make recommendations. and rationale used to interpret the findings should be
carefully described so that the bases for value
judgments are clear.
Analysis of information. Information should be
analyzed appropriately and systematically so that
evaluation questions are answered effectively.
Justified conclusions. Conclusions that are reached
should be explicitly justified for stakeholders’
assessment.
Metaevaluation. The evaluation should be
formatively and summatively evaluated against these
and other pertinent standards to guide its conduct
appropriately and, on completion, to enable close
examination of its strengths and weaknesses by
stakeholders.
Task F. Ensure use of evaluation findings Evaluator credibility. The persons conducting the
and share lessons learned. evaluation should be trustworthy and competent in
performing the evaluation to ensure that findings from
the evaluation achieve maximum credibility and
acceptance.
Report clarity. Evaluation reports should clearly
describe the system being evaluated, including its
context and the purposes, procedures, and findings of
the evaluation so that essential information is provided
and easily understood.
Report timeliness and dissemination. Substantial
interim findings and evaluation reports should be
disseminated to intended users so that they can be
used in a timely fashion.
Vol. 50 / No. RR-13 MMWR 35
Appendix B. — Continued
Cross-reference of Tasks and Relevant Standards
Tasks for evaluating a surveillance system* Relevant standards†
Task F. Ensure use of the findings of the evaluation Evaluation impact. Evaluations should be planned,
and share lessons learned. conducted, and reported in ways that encourage
follow-through by stakeholders to increase the
likelihood of the evaluation being used.
Disclosure of findings. The principal parties of an
evaluation should ensure that the full evaluation
findings with pertinent limitations are made accessible
to the persons affected by the evaluation and any
others with expressed legal rights to receive the
results.
Impartial reporting. Reporting procedures should
guard against the distortion caused by personal
feelings and biases of any party involved in the
evaluation so that the evaluation reflects the findings
fairly.
Metaevaluation. The evaluation should be
formatively and summatively evaluated against these
and other pertinent standards to guide its conduct
appropriately and, on completion, to enable close
examination of its strengths and weaknesses by
stakeholders.
* Adapted from Framework for Program Evaluation in Public Health [CDC. Framework for program evaluation in
public health. MMWR 1999;48(RR–11)] and the original guidelines [CDC. Guidelines for evaluating surveillance
systems. MMWR 1988;37(No. S-5)].
† Adapted from Framework for Program Evaluation in Public Health [CDC. Framework for program evaluation in
public health. MMWR 1999;48(RR-11)].
Module 1: Public Health Surveillance Applied to Reproductive Health
REFERENCES
1. CDC. Public health surveillance. In: Principles of epidemiology:
an introduction to applied epidemiology and biostatistics.
Atlanta (GA): Centers for Disease Control and Prevention; 1992.
p. 289–345.
2. Wetterhall SF, Pappaioanou M, Thacker SB, Baker E, Churchill
RE. The role of public health surveillance: information for
effective action in public health. MMWR 1992;41:S207–S218.
3. Bettcher DW, Sapirie S, Goon EH. Essential public health
functions: results of the international Delphi study. World
Health Stat Q 1994;51:44–54.
4. Buehler JW. Surveillance. In: Rothman KJ, Greenland S, editors.
Modern epidemiology. Philadelphia: Lippincott-Raven
Publishers; 1998. p. 435–57.
5. Snider DE, Stroup DF. Ethical issues. In: Teutsch SM, Churchill
RE, editors. Principles and practice of public health surveillance.
New York: Oxford University Press; 2000. p. 194–214.
6. Fathalla M. Reproductive health: a global overview. Ann NY
Acad Sci 1991;626:1.
7. Berg C, Danel I, Mora G, editors. Guidelines for maternal
mortality epidemiological surveillance. Washington: The World
Bank; 1996.
8. Greenberg RS, editor. Medical epidemiology. Norwalk (CT):
Appleton and Lange; 1993.
9. Colley Gilbert B, Shulman HB, Fischer LA, Rogers MM. The
Pregnancy Risk Assessment Monitoring System (PRAMS):
methods and 1996 response rates from 11 states. Matern Child
Health J 1999;3:199–209.
10. CDC. Sentinel Surveillance System for antimicrobial resistance
in clinical isolates of Neisseria gonorrhoeae. MMWR 1997;36:
585–6, 591–3.
11. Stroup NE, Zack MM, Wharton M. Sources of routinely col
lected data for surveillance. In: Teutsch SM, Churchill RE,
editors. Principles and practice of public health surveillance.
New York: Oxford University Press; 1994. p. 31–82.
12. Murray CJ, Lopez AD. Mortality by cause for eight regions of
the world: global burden of disease study. Lancet 1997;349:
1269–76.
125
Reproductive Health Epidemiology Series
13. Thacker SB, Berkelman RL. Public health surveillance in the
United States. Epidemiol Rev 1988;10:164–90.
14. Stanton C, Abderrahim N, Hill K. DHS maternal mortality
indicators: an assessment of data quality and implications for
data use. DHS Analytical Reports No. 4. Calverton (MD):
Macro International Inc.
15. Safe motherhood indicators—lessons learned in measuring
progress. MotherCare Matters 1999;8(1):1–24.
16. Reproductive health in refugee situations: an inter-agency field
manual. Geneva, Switzerland: United Nations High Commis
sioner for Refugees; 1999.
17. White ME, McDonnell SM. Public health surveillance in low-
and middle-income countries. In: Teutsch SM, Churchill RE,
editors. Principles and practice of public health surveillance.
2nd ed. New York: Oxford University Press; 2000.
18. Teutsch SM. Considerations in planning a surveillance system.
In: Teutsch SM, Churchill RE, editors. Principles and practice of
public health surveillance. 2nd ed. New York: Oxford University
Press; 2000. p. 17–29.
19. Friede A, Blum HL, McDonald M. Public health informatics:
how information-age technology can strengthen public health.
Annu Rev Public Health 1995;16:239–52.
20. Kilbourne EM. Informatics in public health surveillance: current
issues and future perspectives. MMWR 1992;41:S91–S99.
21. Groseclose SL, Sullivan KM, Gibbs NP, Knowles CM. Manage
ment of the surveillance information system and quality control
of data. In: Teutsch SM, Churchill RE, editors. Principles and
practice of public health surveillance. 2nd ed. New York: Oxford
University Press; 2000. p. 95–111.
22. Janes GR, Hutwagner LC, Cates W Jr, Stroup DF, Williamson
GD. Descriptive epidemiology: analyzing and interpreting
surveillance data. In: Teutsch SM, Churchill RE, editors.
Principles and practice of public health surveillance. 2nd ed.
New York: Oxford University Press; 2000. p. 112–67.
23. CDC. Updated guidelines for evaluating public health surveil
lance systems: recommendations from the guidelines working
group. MMWR 2001;50(No. RR-13):1–35.
24. Padian NS, Washington AE. Pelvic inflammatory disease: a
brief overview. Ann Epidemiol 1994;4(2):128–32.
126
Module 1: Public Health Surveillance Applied to Reproductive Health
25. Wasserheit JN. Pelvic inflammatory disease and infertility.
Md Med J 1987;36(1):58–63.
26. Medecins Sans Frontieres. Refugee health: an approach to
emergency situations. London: Macmillan; 1997.
27. Hakewill PA, Moren A. Monitoring and evaluation of
relief programmes. Trop Doct 1991;21(Suppl 1):24–8.
28. CDC. Sexually transmitted diseases treatment guidelines,
2002. MMWR 2002;51(No. RR-06):1-80.
127
Centers for Disease Control
and Prevention
SAFER • HEALTHIER • PEOPLE™