Database and other sources for population-based research

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