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Outcomes and Population-Based Research Sources Database

Using secondary datasets for population-level epidemiologic, outcomes, and health services research can be an effective, resource-efficient way to conduct high quality research. The following tables provide the name, sources, most precise level of geographical classification, most recent date of presentation, and a brief description of data that can be used in such research. The databases and datasets range from registries to survey data to government databases that can be used to research health behaviors, healthcare utilization, disease incidence, and other health related issues. The data source name of each database/dataset is hyperlinked to the source’s website which will contain more information on that source. Sources are categorized into one of five overarching categories—the Center for Disease Control and Prevention (CDC), Agency for Healthcare Quality and Research (AHRQ), National Cancer Institute (NCI), Substance Abuse and Mental Health Services Administration (SAMHSA), and all other sources. These other sources include the state of Illinois and Medicare, among other sources. This list not meant to be exhaustive, but to provide a reasonably extensive list of potential sources for secondary database research exploration. There may be some cost and/or application processes associated with obtaining these sources.

For assistance in accessing and utilizing this data, please contact contact:

Community Health and Demographic Sources (CHADS) | SIU School of Medicine

For assistance in accessing and utilizing this data, please contact:

Albert Botchway, PhD: abothcway@siumed.edu (217) 545-3611

Steven Scaife, MS: sscaife@siumed.edu (217) 545-6949

For an introductory guide to developing and conducting research using secondary datasets, please read “Conducting High-Value Secondary Dataset Analysis: An Introductory Guide and Resources” by Dr. Alexander K. Smith and colleagues, which is available here.

CDC Secondary Database Sources
Data Source Name Most Precise Level of Geography Data Element Categories
National Health and Nutrition Examination Survey (NHANES) National Diseases and conditions, nutrition monitoring, environmental exposures monitoring, children’s growth and development, infectious disease monitoring, etc.
National Ambulatory Medical Care Survey National Provider characteristics and patient characteristics (including demographics, diagnoses, medications)
Hospital Discharge Survey National Diagnosis, Payment, and Admission Type
National Home Health Aide Survey National Recruitment, job satisfaction, training, job history, demographics
National Survey of Family Growth National Contraception, sterilization, teenage sexual activity and pregnancy, family planning and unintended pregnancy, infertility, adoption, breastfeeding, marriage, divorce, cohabitation, fatherhood involvement, HIV risk behavior
National Vital Statistics System State (or more specific) Birth rates, birthweight, teen and nonmarital pregnancy, pregnancy outcomes, method of delivery, preterm delivery, multiple births, infant mortality, life expectancy, causes of death, occupational mortality
National Study of LongTerm Care Providers National Background information, service offered, staff profile, resident profile, record keeping.
National Immunization Survey National Immunization status of preschool children and adolescents, demographics, family resources, health care utilization, barriers to care
National Immunization Survey-Teen State Immunization status of teens aged 13-17, demographics, family resources, health care utilization, barriers to care
National Survey of Ambulatory Surgery Region/ MSA Data are obtained on patients' symptoms, physicians' diagnoses, and medications ordered or provided. The survey also provides statistics on the demographic characteristics of patients and services provided, including information on diagnostic procedures, patient management, and planned future treatment.
Asthma Call Back Survey State Current/former asthma status, doctors visits, asthma management, medication use, lifestyle effects
Compressed Mortality File County Geographic location, age, race gender, ICD code for underlying cause of death
Behavioral Risk Factors Surveillance System State Demographics, health behaviors, chronic disease presence
Medical Expenditures Panel Survey State and metro area Access, disparities, health care, prescription drugs, expenditures, mental health, obesity
Nationwide Inpatient Sample (NIS) 44 states and 1000+ hospitals Primary and secondary diagnosis, admission/discharge statuses, demographics, payment source, charges, LOS, Hospital characteristics
Nationwide Emergency Department Sample 29 million records and 964 hospitals in 29 states (including IL) Primary and secondary diagnoses, discharge status, patient demographics, payment source, ED charges, Hospital characteristics
Kids’ Inpatient Database 44 state In Patient data- 4,100+ hospital Primary and secondary diagnosis, admission/discharge statuses, demographics, payment source, charges, LOS, Hospital
State Inpatient Database 44 state Inpatient Hospital data Primary and secondary diagnosis, admission/discharge statuses, demographics, payment source, charges, LOS, Hospital characteristics
State Ambulatory Surgery Database 28 states ambulatory surgery database: some 2009 Primary and secondary diagnosis, admission/discharge statuses, demographics, payment source, charges, LOS, Hospital characteristics
State Emergency Department Databases 27 states; some hospital identification when linked with ARF 2009 Primary and secondary diagnosis, admission/discharge statuses, demographics, payment source, charges, LOS, Hospital characteristics
Surveillance Epidemiology and End Results (SEER) County or City dependent on location Cancer incidence, type, staging, survival from 18 registries (constituting 28% of the US population) around the country. Cancer mortality data are available for the entire country.
SEER-Medicare Linked Database County or City dependent on location Clinical, demographic, cause of death, and Medicare claim information for cancer patients
SEER-Medicare Health Outcomes Survey County or City dependent on location Clinical, demographic, cause of death, and health related quality of life of cancer patients with Medicare
Cancer Data Access System Study Center Data from the National Lung Screening Trial (NLST) and the Prostate, Lung, Colorectal, and Ovarian Cancer Screening Trial including screening data, results, and patient-related data
Health Information National Trends Survey Regional Health information sources, prevention behaviors, cancer knowledge, etc
National Survey on Drug Use and Health National Demographics, alcohol, tobacco, and illegal drug use
National Survey of Substance Abuse Treatment Services State Ownership, services offered, types of treatment, # of clients and beds, programs offered, medications prescribed and dispensed
Treatment Episode DataAdmissions Metropolitan/Micropolitan Area Client characteristics, service setting, prior treatment, substances abused
Illinois State Cancer Registry Zip code level Data on cancer type, stage, gender, race, incidence, mortality etc. The more local the data, the less specific the data.
National Survey of Children with Special Health Care Needs State level Decision making about services, coordinated, ongoing comprehensive care, adequate insurance, early and continuous screening, community based services availability, receipt of services to make transition into adult life
Medicare/Medicaid State Beneficiary-specific, providerspecific including claims and clinical data for varying types of care including inpatient, outpatient , hospice, home health and skilled nursing facility
Survey of Adult Transition and Health State Routine care, specialist care, dental, RXs, mental healthcare, health insurance, accessibility
National Sample Survey of Registered Nurses County Education and training in nursing, professional nursing certifications, education and workforce participation prior to becoming a registered nurse, current and recent workforce participation, income, demographic characteristics
National Cancer Database Census Division Patient characteristics, facility characteristics, staging, treatment and outcome data