Overview of the Information Systems Currently Available to Public Health Researchers David Walker National Immunization Program (404) DIMACS Working Group October 16, 2002

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 Background and Objectives

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 Presentation Overview

“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 “National and international surveillance in the control of infectious diseases.” WHO Chronicles. 20: Epidemiological Surveillance Systems

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

Inventory of CDC Surveillance Systems 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 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 90.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 ) 96.Sexually Transmitted Disease Surveillance System (Form CDC-73.60A) 97.Sexually Transmitted Disease Surveillance System (Form CDC ) 98.Sexually Transmitted Disease Surveillance System (Form CDC ) 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

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

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 Active 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” Passive Surveillance Design

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 Notifiable Disease Surveillance Characteristics

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 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

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) Notifiable Disease Surveillance Examples

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 NETSS 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 Reporting Characteristics

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 Birth 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. Vital Statistics Death Certificate Information

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 Characteristics

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 General Surveys

National Natality Survey National Fetal Mortality Survey National Electronic Injury Surveillance System Birth Defects Monitoring Program National Health-Related Surveys Examples of Health Issue-Specific Surveys

122 Cities Mortality Reporting System National Hospital Discharge Survey National Ambulatory Medical Care Survey National Nursing Home Survey National Health-Related Surveys Examples of Health Provider Surveys

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 Characteristics

Adverse Event Reporting System (AERS) –Reports of suspected adverse events to pharmaceutical products Vaccine Adverse Event Reporting System (VAERS) Spontaneous Surveillance Systems Examples

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 Characteristics

Medicare and Medicaid Systems Veterans Administration data system Vaccine Safety DataLink –HMO data for pharmacoepidemiology Administrative Data Systems Health Provider Examples

Chronic disease registries –Cancer Surveillance, Epidemiology and End Results (SEER) –National Congenital Rubella Syndrome Registry Vaccine registries Administrative Data Systems Registry 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 Administrative Data Systems Other Examples

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 Sources Characteristics

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 Sources Examples

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

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 Integration of Data Sources Examples

“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 Summary

Statement regarding Integration