Overview of the Information Systems
Currently Available to Public Health
Researchers
David Walker
National Immunization Program
dwalker@cdc.gov (404)630-1882
DIMACS Working Group
October 16, 2002
Background and Objectives
• Availability of data for public health monitoring
or research is increasing
• Related data may exist in multiple sources
• Design of data source can influence
applicability to specific studies
• This presentation will provide:
– Basic description of epidemiological surveillance
system issues
– General review of CDC data sources
– Example of integrating information sources
Presentation Overview
• Defining “Surveillance” in Epidemiological Terms
• Issues in identifying data sources
– Surveillance-specific vs. Administrative data sources
– Active vs. Passive Surveillance
• Examples of data sources
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“Notifiable” health incident reporting
Spontaneous health incident reporting
Standard health-related surveys
Administrative data systems
Commercial entities
• Integration of Data Sources
• Summary
Epidemiological
Surveillance Systems
“The systematic collection of data pertaining to
the occurrence of specific diseases, the analysis
and interpretation of these data, and the
dissemination of consolidated and processed
information to contributors to the program and
other interested persons.”
Raska, K. 1966. “National and international surveillance in the control of infectious
diseases.” WHO Chronicles. 20:313-321
Traditional Epidemiological
Surveillance
• Surveillance of specific diseases
• Based on public health monitoring or analysis
needs
• Data collected through public health entities
• Detailed definition of data elements, population
sampling methods, and survey administration
• Often designed to allow patient follow-up
Inventory of CDC Surveillance Systems
1. 122 Cities Mortality Reporting System
2. Active Bacterial Core Surveillance
3. Active Surveillance for Cryptosporidium and Cyclospora via FoodNet
4. Adult Blood-Lead Epidemiology and Surveillance Program
5. Adult Spectrum (HIV) of Disease
6. American Red Cross Health Impact Surveillance System for Natural Disasters
7. Behavioral Risk Factor Surveillance System
8. Blood Donor Study
9. CDC Firearm Injury Surveillance Study
10.Central Nervous System Injury Surveillance System
11. Childhood Blood-Lead Poisoning Surveillance System
12.Cholera
13.Cholera and Other Vibrio Infections Surveillance System
14.Clinic-based Blinded HIV Seroprevalence Study
15.Coal Workers' X-Ray Surveillance Program
Inventory of CDC Surveillance Systems
16.Counseling and Testing System
17.Creutzfeldt-Jakob Disease Surveillance System
18.Diphtheria Antitoxin
19.Enterovirus Surveillance System
20.Fatality Assessment and Control Evaluation
21.Foodborne Diseases Active Surveillance System
22.HIV/AIDS Reporting System
23.Haemophilus Influenzae Surveillance System
24.Hazardous Substances Emergency Events Surveillance
25.Hazardous Waste Workers Surveillance Project
26.Hearing Conservation and Audiometric Database Analysis System
27.Hemophilia Surveillance System
28.Imported Dengue
29.Jail STD Prevalence Monitoring Project
30.Laboratory Surveillance of Cryptosporidium and Malaria via PHLIS
Inventory of CDC Surveillance Systems
31.Longitudinal Follow-up to National Maternal and Infant Health Survey
32.Lyme Disease - NETSS
33.Medical Examiner/Coroner Information Sharing Program
34.Metropolitan Atlanta Congenital Defects Program
35.Metropolitan Atlanta Developmental Disabilities Surveillance Program
36.Minimal Data Set for Hemophilia
37.National Breast/Cervical Cancer Early Detection
38.NHANES I Epidemiologic Follow-up Study
39.National Ambulatory Medical Care Survey
40.National Antimicrobial Surveillance System
41.National Bacterial Meningitis Reporting System
42.National Botulism Surveillance System
43.National Campylobacter Surveillance System
44.National Coal Workers' Autopsy Study
45.National Congenital Rubella Syndrome Registry
Inventory of CDC Surveillance Systems
46.National Electronic Injury Surveillance System
47.National Electronic Telecommunications System for Surveillance
48.National Employer Health Insurance Survey
49.National Exposure Registry
50.National Health and Nutrition Examination Survey
51.National Home and Hospice Care Survey
52.National Hospital Ambulatory Medical Care Survey
53.National Hospital Discharge Survey
54.National Immunization Provider Record Check Study
55.National Immunization Survey
56.National Kawasaki Syndrome Surveillance System
57.National Malaria Surveillance System
58.National Mortality Follow-back Study
59.National Nosocomial Infections Surveillance System
60.National Nursing Home Survey
Inventory of CDC Surveillance Systems
61.National Occupational Mortality Surveillance System
62.National Polio Surveillance System
63.National Reye Syndrome Surveillance System
64.National Salmonella Surveillance System
65.National Surveillance System for Hospital Health Care Workers
66.National Surveillance System for Pneumoconiosis Mortality
67.National Surveillance for Domestic Arboviral Encephalitis Cases in Humans
68.National Surveillance of Dialysis-Associated Diseases in U.S.
69.National Survey of Ambulatory Surgery
70.National Survey of Family Growth
71.National Traumatic Occupational Fatalities Surveillance System
72.National Tuberculosis Surveillance System
73.National Vital Statistics System
74.National Vital Statistics System - Fetal Death
75.National Vital Statistics System - Linked Birth/Infant Death
Inventory of CDC Surveillance Systems
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National Vital Statistics System - Mortality
National Vital Statistics System - Natality
Nonhuman Primate Retrovirus Infections Among Workers
Parasitic Diseases Drug Service
Pediatric Nutrition Surveillance System
Pediatric Spectrum (HIV) of Disease
Perinatal Hepatitis B Prevention Data Management System
Pertussis
Plague
Pregnancy Nutrition Surveillance System
Pregnancy Risk Assessment Monitoring System
Public Health Laboratory Health Information System
Regional Infertility Prevention Program - Chlamydia
Second Longitudinal Study on Aging
Sentinel Counties Study of Viral Hepatitis
Inventory of CDC Surveillance Systems
91.Sentinel Event Notification System for Occupational Risks - Asthma
92.Sentinel Event Notification System for Occupational Risks - Pesticides
93.Sentinel Event Notification System for Occupational Risks - Silicosis
94.Sentinel Site Laboratory-Based Surveillance for Cyclospora
95.Sexually Transmitted Disease Surveillance System (Form CDC-73.126)
96.Sexually Transmitted Disease Surveillance System (Form CDC-73.60A)
97.Sexually Transmitted Disease Surveillance System (Form CDC-73.998)
98.Sexually Transmitted Disease Surveillance System (Form CDC-9.2638)
99.Sexually Transmitted Disease Surveillance System (Form CDC-9.688)
100. Sexually Transmitted Diseases Management Information System
101. Shigella
102. State-Based Emergency Department Injury Surveillance
103. Streptococcus Pneumoniae and Haemophilus Influenzae
104. Supplement to HIV/AIDS Surveillance
105. Surveillance for Giardia
Inventory of CDC Surveillance Systems
106. Surveillance for Pneumocystis Carinii Pneumonia Treatment Failures
107. Surveillance for Trichinosis and Cryptosporidium
108. Tetanus
109. Tickborne Relapsing Fever and Tularemia
110. Tuberculosis Infection in Health Care Workers
111. Tuberculosis Information Management System
112. U.S. Influenza Sentinel Physician Surveillance Network
113. Unexplained Deaths and Serious Illnesses Surveillance
114. Universal Data Collection and Serum Specimen Collection System
115. Vaccine Adverse Event Reporting System
116. Vaccine Safety Datalink Project
117. Viral Hepatitis Surveillance Program
118. Waterborne Diseases Outbreak Surveillance System
119. Young Men's Survey
120. Youth Risk Behavior Surveillance System
Administrative Health Data Sources
• Intent of data collection for purpose other than
for epidemiological surveillance
• May cover a broad range of health issues
• May not be patient specific
• Data structure may not conform to public
health-related data standards
• May not have population sampling concerns
Active Surveillance Design
• Data collected for specific disease or health
issue
• Formal sampling protocols employed
• Usually a specific time frame for administering
surveys
• Typically conducted by trained public health
professionals
Passive Surveillance Design
• Health issue may be more broad or general in
nature
• Responders may be self-selected, not sampled
• Data collection may be on-going without
discrete intervals
• Data may be “self-reported”
Notifiable Disease Surveillance
Characteristics
• State-mandated requirements for disease
surveillance
• State and Federal monitoring of potential
outbreaks of communicable diseases
• Provides for individual case investigation
• Monitoring of disease spread
Nationally Notifiable Infectious Diseases
United States, 2002
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Aids
Anthrax
Botulism
Brucellosis
Chancroid
Chlamydia
Cholera
Coccidioidomycosis
Cryptosporidiosis
Cyclosporiasis
Diphtheria
Ehrlichiosis
Encephalitis
• Enterohemorrhagic
Escherichia coli
• Giardiasis
• Gonorrhea
• Haemophilus influenzae,
invasive disease
• Hansen disease (leprosy)
• Hantavirus pulmonary
syndrome
• Hemolytic uremic
syndrome
• Hepatitis
• HIV infection
• Legionellosis
Nationally Notifiable Infectious Diseases
United States, 2002, Continued
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Listeriosis
Lyme disease
Malaria
Measles
Meningococcal disease
Mumps
Pertussis
Plague
Poliomyelitis, paralytic
Psittacosis
Q fever
Rabies
Rocky mountain
spotted fever
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Rubella
Rubella, congenital syndrome
Salmonellosis
Shigellosis
Streptococcal diseases
Syphilis
Tetanus
Toxic-shock syndrome
Trichinosis
Tuberculosis
Tularemia
Typhoid fever
Varicella (deaths only)
Yellow fever
Notifiable Disease Surveillance
Examples
National Electronic Telecommunication
Surveillance System (NETSS)
National Electronic Disease Surveillance System
(NEDSS, in development)
HIV/AIDS Reporting System (HARS)
Sexually Transmitted Disease Management
Information System (STDMIS)
Tuberculosis Information Management System
(TIMS)
NETSS Characteristics
• Weekly reporting from States to CDC
• Provides data for Morbidity and Mortality
Weekly Report (MMWR)
• Includes patient demographic data (core record)
• Includes disease-specific data (extended record)
• Case investigation allows additional data
collection and editing
Vital Statistics Reporting
Characteristics
• National Vital Statistics System
• Birth and Death certificates filed in states
reported to NCHS
• Data standards developed by NCHS, but can
vary by state
• NCHS prepares public use data files or reports
– Vital and Health Statistics Series
– National Death Index
Vital Statistics
Birth Certificate Information
• Basic demographic data on child and parents
– Name, Age, Race, Residential information, etc.
• Newborn’s health status
– Weight, gestational age, apgar scores, congenital
malformations, birth method, etc.
• Mother’s health status
– Pregnancy status, STD test results, chronic or
infectious diseases present, hazardous material
exposure, alcohol, tobacco, or drug use during
pregnancy, conditions of labor, etc.
Vital Statistics
Death Certificate Information
• Basic demographic data on decedent
– Name, age, race, occupation, etc.
• Place of death
– City, county, hospital, etc.
• Cause of Death
– Immediate cause, contributing causes, length of
illness, etc.
• Disposition of body
– Autopsy performed, cremation, location of burial,
etc.
National Health-Related Surveys
Characteristics
• On-going or annual surveys
• General surveys
– National Health Interview Survey
– Complex sampling protocols
• Specific to particular health issue
– National Fetal Death Mortality Survey
– Follow-up on specific health incidents
• Monitor specific health provider services
– U.S. Influenza Sentinel Physician Surveillance
Network
National Health-Related Surveys
Examples of General Surveys
• National Health Interview Survey (NHIS)
• National Immunization Survey (NIS)
• National Health and Nutrition Examination
Survey (NHANES)
• Behavioral Risk Factor Surveillance System
(BRFSS)
National Health-Related Surveys
Examples of Health Issue-Specific Surveys
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National Natality Survey
National Fetal Mortality Survey
National Electronic Injury Surveillance System
Birth Defects Monitoring Program
National Health-Related Surveys
Examples of Health Provider Surveys
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122 Cities Mortality Reporting System
National Hospital Discharge Survey
National Ambulatory Medical Care Survey
National Nursing Home Survey
Spontaneous Surveillance Systems
Characteristics
• Voluntary reporting
• Different individuals may report same incident
– Patient, physician, family member, etc.
• Multiple records for same incident may contain
different data
• Subsequent events for the same individual may
not be linked
• Rates difficult to calculate due to lack of
denominator data
Spontaneous Surveillance Systems
Examples
• Adverse Event Reporting System (AERS)
– Reports of suspected adverse events to
pharmaceutical products
• Vaccine Adverse Event Reporting System
(VAERS)
Administrative Data Systems
Characteristics
• Health data collected by health service provider
– Can be population-specific
• Administrative purposes for data
– Enrollment, patient registry, billing, case
management, procedure results
• May link to external data sources
• Rarely study-specific data
• Subject to anomalies of administrative system
– “Upcoding” diagnoses, inclusion of “rule out”
codes, etc.
Administrative Data Systems
Health Provider Examples
• Medicare and Medicaid Systems
• Veterans Administration data system
• Vaccine Safety DataLink
– HMO data for pharmacoepidemiology
Administrative Data Systems
Registry Examples
• Chronic disease registries
– Cancer Surveillance, Epidemiology and End Results
(SEER)
– National Congenital Rubella Syndrome Registry
• Vaccine registries
Administrative Data Systems
Other Examples
• Laboratory reporting systems
• Vaccine Management System (VACMAN)
– Vaccines for Children grant ordering system
• Insurance company claims processing
• Industrial employees records
– Ford Motor Company
– Textile plant vaccination records
Other Health Data Sources
Characteristics
• Data captured by commercial or industrial
entities
• May not be patient-specific
• Data may not be complete
• Data quality may be suspect
Other Health-Related Data Sources
Examples
• Over-the-counter drug sales from pharmacy or
grocery chains
• Emergency response systems (911 calls)
• Web logs of health-related entities
• Media monitoring services
Integration of Data Sources
• Provides more thorough information about
health events
• Must be planned at an appropriate level for the
granularity of the data
• Integration at the patient-specific level
– Matching lab reports with notifiable disease reports
• Integration at a more general level
– Linking patient residence to Census Block data
• Integration at a summary level
– Linking county or state summary
characteristics
Integration of Data Sources
Examples
• CDC Information Systems Integration Project
– Integrating notifiable disease reporting systems,
laboratory reporting systems, and disease registry
systems
• Match Medicaid data with VA Hospital data
– Provides more complete source of elderly patient
data
• Link patient data to Census Block data
– Provides demographic characteristics missing from
patient data
Summary
• “Epidemiological Surveillance” has expanded beyond
it’s traditional roots
• General characteristics of surveillance data sources
– Surveillance can be active or passive
– Administrative data sources can provide surveillance data
• Examples of data sources
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Notifiable disease reporting
Spontaneous health incident reporting
National health-related surveys
Administrative data systems
Commercial entities
• Integration of Data Sources
Statement regarding Integration