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, health care 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, as well as Community Health and Demographic Sources (CHADS) please contact:
Albert Botchway, PhD: statistics@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.
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 |