Overview of the Information Systems Currently Available to Public Health Researchers

1
Overview of the Information Systems Currently
Available to Public Health Researchers

• David Walker
• National Immunization Program
• dwalker_at_cdc.gov [phone]
• DIMACS Working Group
• October 16, 2002

2
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

3
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
• Notifiable health incident reporting
• Spontaneous health incident reporting
• Standard health-related surveys
• Administrative data systems
• Commercial entities
• Integration of Data Sources
• Summary

4
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. 20313-321

5
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

6
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

7
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

8
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

9
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

10
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

11
Inventory of CDC Surveillance Systems

• 76. National Vital Statistics System - Mortality
• 77. National Vital Statistics System - Natality
• 78. 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 System
• 83. Pertussis
• 84. Plague
• 85. Pregnancy Nutrition Surveillance System
• 86. Pregnancy Risk Assessment Monitoring System
• 87. Public Health Laboratory Health Information
  System
• 88. Regional Infertility Prevention Program -
  Chlamydia
• 89. Second Longitudinal Study on Aging
• Sentinel Counties Study of Viral Hepatitis

12
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

13
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

14
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

15
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

16
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

17
Notifiable Disease SurveillanceCharacteristics

• 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

18
Nationally Notifiable Infectious Diseases
United States,
2002

• 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

19
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 mountain spotted fever
  

• Rubella
  
• Rubella, congenital syndrome
  
• Salmonellosis
  
• Shigellosis
  
• Streptococcal diseases
• Syphilis
• Tetanus
• Toxic-shock syndrome
  
• Trichinosis
• Tuberculosis
• Tularemia
• Typhoid fever
• Varicella (deaths only)
• Yellow fever

20
Notifiable Disease SurveillanceExamples

• 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)

21
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

22
Vital Statistics ReportingCharacteristics

• 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

23
Vital StatisticsBirth Certificate Information

• 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.

24
Vital StatisticsDeath 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.

25
National Health-Related SurveysCharacteristics

• 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

26
National Health-Related SurveysExamples 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)

27
National Health-Related SurveysExamples of
Health Issue-Specific Surveys

• National Natality Survey
• National Fetal Mortality Survey
• National Electronic Injury Surveillance System
• Birth Defects Monitoring Program

28
National Health-Related SurveysExamples of
Health Provider Surveys

• 122 Cities Mortality Reporting System
• National Hospital Discharge Survey
• National Ambulatory Medical Care Survey
• National Nursing Home Survey

29
Spontaneous Surveillance SystemsCharacteristics

• 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

30
Spontaneous Surveillance SystemsExamples

• Adverse Event Reporting System (AERS)
• Reports of suspected adverse events to
  pharmaceutical products
• Vaccine Adverse Event Reporting System (VAERS)

31
Administrative Data SystemsCharacteristics

• 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.

32
Administrative Data SystemsHealth Provider
Examples

• Medicare and Medicaid Systems
• Veterans Administration data system
• Vaccine Safety DataLink
• HMO data for pharmacoepidemiology

33
Administrative Data SystemsRegistry Examples

• Chronic disease registries
• Cancer Surveillance, Epidemiology and End Results
  (SEER)
• National Congenital Rubella Syndrome Registry
• Vaccine registries

34
Administrative Data SystemsOther 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

35
Other Health Data SourcesCharacteristics

• Data captured by commercial or industrial
  entities
• May not be patient-specific
• Data may not be complete
• Data quality may be suspect

36
Other Health-Related Data SourcesExamples

• Over-the-counter drug sales from pharmacy or
  grocery chains
• Emergency response systems (911 calls)
• Web logs of health-related entities
• Media monitoring services

37
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

38
Integration of Data SourcesExamples

• 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

39
Summary

• Epidemiological Surveillance has expanded
  beyond its 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
• Notifiable disease reporting
• Spontaneous health incident reporting
• National health-related surveys
• Administrative data systems
• Commercial entities
• Integration of Data Sources

40
Statement regarding Integration