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Overview of the Information Systems
Currently Available to Public Health
Researchers
David WalkerNational Immunization Program
[email protected] (404)630-1882
DIMACS Working Group
October 16, 2002
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The systematic collection of data pertaining to
the occurrence of specific diseases, the analysis
and interpretation of these data, and thedissemination 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
Epidemiological
Surveillance Systems
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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
Traditional Epidemiological
Surveillance
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Inventory of CDC Surveillance Systems
76. National Vital Statistics System - Mortality
77. National Vital Statistics System - Natality78. Nonhuman Primate Retrovirus Infections Among Workers
79. Parasitic Diseases Drug Service
80. Pediatric Nutrition Surveillance System
81. Pediatric Spectrum (HIV) of Disease
82. Perinatal Hepatitis B Prevention Data Management System83. Pertussis
84. Plague
85. Pregnancy Nutrition Surveillance System
86. Pregnancy Risk Assessment Monitoring System
87. Public Health Laboratory Health Information System88. Regional Infertility Prevention Program - Chlamydia
89. Second Longitudinal Study on Aging
90. Sentinel Counties Study of Viral Hepatitis
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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. Shigella102. State-Based Emergency Department Injury Surveillance
103. Streptococcus Pneumoniae and Haemophilus Influenzae
104. Supplement to HIV/AIDS Surveillance
105. Surveillance for Giardia
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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
Administrative Health Data Sources
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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 healthprofessionals
Active Surveillance Design
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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
Passive Surveillance Design
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State-mandated requirements for disease
surveillance
State and Federal monitoring of potentialoutbreaks of communicable diseases
Provides for individual case investigation
Monitoring of disease spread
Notifiable Disease SurveillanceCharacteristics
N i ll N ifi bl I f i Di
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Nationally Notifiable Infectious Diseases
United States, 2002
Aids
Anthrax
Botulism
Brucellosis
Chancroid
Chlamydia
Cholera
Coccidioidomycosis
Cryptosporidiosis
Cyclosporiasis
Diphtheria
Ehrlichiosis
Encephalitis
EnterohemorrhagicEscherichia coli
Giardiasis
Gonorrhea
Haemophilus influenzae,
invasive disease Hansen disease (leprosy)
Hantavirus pulmonarysyndrome
Hemolytic uremicsyndrome
Hepatitis
HIV infection
Legionellosis
N ti ll N tifi bl I f ti Di
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Nationally Notifiable Infectious Diseases
United States, 2002, Continued
Listeriosis
Lyme disease
Malaria
Measles
Meningococcal disease
Mumps
Pertussis
Plague
Poliomyelitis, paralytic
Psittacosis
Q fever
Rabies
Rocky mountainspotted fever
Rubella
Rubella, congenital syndrome
Salmonellosis
Shigellosis
Streptococcal diseases
Syphilis
Tetanus
Toxic-shock syndrome
Trichinosis
Tuberculosis
Tularemia
Typhoid fever
Varicella (deaths only)
Yellow fever
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National Electronic Telecommunication
Surveillance System (NETSS)
National Electronic Disease Surveillance System(NEDSS, in development)
HIV/AIDS Reporting System (HARS)
Sexually Transmitted Disease ManagementInformation System (STDMIS)
Tuberculosis Information Management System
(TIMS)
Notifiable Disease SurveillanceExamples
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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 datacollection and editing
NETSS Characteristics
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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 reportsVital and Health Statistics Series
National Death Index
Vital Statistics ReportingCharacteristics
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Basic demographic data on child and parents
Name, Age, Race, Residential information, etc.
Newborns health status
Weight, gestational age, apgar scores, congenital
malformations, birth method, etc.
Mothers 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 StatisticsBirth Certificate Information
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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 SurveillanceNetwork
National Health-Related SurveysCharacteristics
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National Health Interview Survey (NHIS)
National Immunization Survey (NIS)
National Health and Nutrition ExaminationSurvey (NHANES)
Behavioral Risk Factor Surveillance System
(BRFSS)
National Health-Related Surveys
Examples ofGeneral Surveys
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National Natality Survey
National Fetal Mortality Survey National Electronic Injury Surveillance System
Birth Defects Monitoring Program
National Health-Related SurveysExamples of Health Issue-Specific Surveys
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122 Cities Mortality Reporting System
National Hospital Discharge Survey
National Ambulatory Medical Care Survey
National Nursing Home Survey
National Health-Related SurveysExamples of Health Provider Surveys
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Voluntary reporting Different individuals may report same incident
Patient, physician, family member, etc.
Multiple records for same incident may containdifferent data
Subsequent events for the same individual may
not be linked
Rates difficult to calculate due to lack of
denominator data
Spontaneous Surveillance SystemsCharacteristics
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Adverse Event Reporting System (AERS)
Reports of suspected adverse events to
pharmaceutical products
Vaccine Adverse Event Reporting System
(VAERS)
Spontaneous Surveillance SystemsExamples
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Medicare and Medicaid Systems
Veterans Administration data system Vaccine Safety DataLink
HMO data for pharmacoepidemiology
Administrative Data Systems
Health ProviderExamples
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Laboratory reporting systems
Vaccine Management System (VACMAN)
Vaccines for Children grant ordering system Insurance company claims processing
Industrial employees records
Ford Motor CompanyTextile plant vaccination records
Administrative Data SystemsOther Examples
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Data captured by commercial or industrial
entities
May not be patient-specific Data may not be complete
Data quality may be suspect
Other Health Data SourcesCharacteristics
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Over-the-counter drug sales from pharmacy or
grocery chains
Emergency response systems (911 calls) Web logs of health-related entities
Media monitoring services
Other Health-Related Data SourcesExamples
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I t ti f D t S
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CDC Information Systems Integration ProjectIntegrating 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
Integration of Data SourcesExamples
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Statement regarding Integration