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Overview of the Information Systems Currently Available to Public Health Researchers David Walker National Overview of the Information Systems Currently Available to Public Health Researchers David Walker National Immunization Program [email protected] gov (404)630 -1882 DIMACS Working Group October 16, 2002

Background and Objectives • Availability of data for public health monitoring or research is 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 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

Epidemiological Surveillance Systems “The systematic collection of data pertaining to the occurrence of specific 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 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 Inventory of CDC Surveillance Systems 1. 122 Cities Mortality Reporting System 2. Active Bacterial Core Surveillance 3. Active Surveillance for Cryptosporidium and Cyclospora via Food. Net 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 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 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 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 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 76. 77. 78. 79. 80. 81. 82. 83. 84. Inventory of CDC Surveillance Systems 76. 77. 78. 79. 80. 81. 82. 83. 84. 85. 86. 87. 88. 89. 90. 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 - 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. 60 A) 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. 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 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 healthrelated data standards • May not have population sampling concerns

Active Surveillance Design • Data collected for specific disease or health issue • Formal 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 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 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 • • • • Aids Anthrax Botulism 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

Nationally Notifiable Infectious Diseases United States, 2002, Continued • • • • Listeriosis Lyme 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, 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 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 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 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 – 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, 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 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 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 • • National Natality Survey National National Health-Related Surveys Examples of Health Issue-Specific Surveys • • 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 • • 122 Cities Mortality Reporting National Health-Related Surveys Examples of Health Provider Surveys • • 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 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 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 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 Administrative Data Systems Health Provider Examples • Medicare and Medicaid Systems • Veterans Administration data system • Vaccine Safety Data. Link – HMO data for pharmacoepidemiology

Administrative Data Systems Registry Examples • Chronic disease registries – Cancer Surveillance, Epidemiology and 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) 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 • 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 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 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 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 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 – – – Notifiable disease reporting Spontaneous health incident reporting National health-related surveys Administrative data systems Commercial entities • Integration of Data Sources

Statement regarding Integration Statement regarding Integration