Download CDC Secondary Database Sources

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, contact Whitney Zahnd at [email protected] or (217) 545-2428.
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
Most recent year of
data available
Data Element categories
National Health and
National
2011-2012
Diseases and conditions, nutrition monitoring, environmental exposures monitoring,
Nutrition Examination
children’s growth and development, infectious disease monitoring, etc.
Survey (NHANES)
The National Health and Nutrition Examination Survey (NHANES) is a program of studies designed to assess the health and nutritional status of adults and
children in the United States. The survey is unique in that it combines interviews and physical examinations. NHANES is a major program of the National Center
for Health Statistics (NCHS). NCHS is part of the Centers for Disease Control and Prevention (CDC) and has the responsibility for producing vital and health
statistics for the Nation.
National Ambulatory
National
2011
Provider characteristics and patient characteristics (including demographics,
Medical Care Survey
diagnoses, medications)
The National Ambulatory Medical Care Survey (NAMCS) is a national survey designed to meet the need for objective, reliable information about the provision
and use of ambulatory medical care services in the United States. Findings are based on a sample of visits to non-federal employed office-based physicians who
are primarily engaged in direct patient care.
Hospital Discharge
National
2010
Diagnosis, Payment, and Admission Type
Survey
Last Updated on August 19, 2015
Data Source Name
Most Precise Level
of Geography
Most recent year of
data available
Data Element categories
The National Hospital Discharge Survey (NHDS), which has been conducted annually since 1965, is a national probability survey designed to meet the need for
information on characteristics of inpatients discharged from non-Federal short-stay hospitals in the United States.
National Home Health
National
2007
Recruitment, job satisfaction, training, job history, demographics
Aide Survey
The National Home Health Aide Survey (NHHAS), the first national probability survey of home health aides, was designed to provide national estimates of home
health aides employed by agencies that provide home health and/or hospice care.
National Survey of
National
2011-2013
Contraception, sterilization, teenage sexual activity and pregnancy, family planning
Family Growth
and unintended pregnancy, infertility, adoption, breastfeeding, marriage, divorce,
cohabitation, fatherhood involvement, HIV risk behavior
The National Survey of Family Growth (NSFG) gathers information on family life, marriage and divorce, pregnancy, infertility, use of contraception, and men's
and women's health. The survey results are used by the U.S. Department of Health and Human Services and others to plan health services and health education
programs, and to do statistical studies of families, fertility, and health.
National Vital Statistics
State(or more
2010
Birth rates, birthweight, teen and nonmarital pregnancy, pregnancy outcomes,
System
specific)
method of delivery, preterm delivery, multiple births, infant mortality, life
expectancy, causes of death, occupational mortality
The National Vital Statistics System is the oldest and most successful example of inter-governmental data sharing in Public Health and the shared relationships,
standards, and procedures form the mechanism by which NCHS collects and disseminates the Nation's official vital statistics. These data are provided through
contracts between NCHS and vital registration systems operated in the various jurisdictions legally responsible for the registration of vital events – births,
deaths, marriages, divorces, and fetal deaths.
National Study of LongNational
2014
Background information, service offered, staff profile, resident profile, record
Term Care Providers
keeping,
The National Study of Long-term Care Providers is a biennial survey of adult day care service centers and residential care communities. Restricted survey data
files are accessible to approved researchers. Fees apply.
National Immunization
National
2012
Immunization status of preschool children and adolescents, demographics, family
Survey
resources, health care utilization, barriers to care
The National Immunization Survey (NIS) is sponsored by the National Center for Immunizations and Respiratory Diseases (NCIRD) and conducted jointly by
NCIRD and the National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention. The NIS is a list-assisted random-digit-dialing telephone
survey followed by a mailed survey to children’s immunization providers that began data collection in April 1994 to monitor childhood immunization coverage.
National Immunization
State
2013
Immunization status of teens aged 13-17, demographics, family resources, health
Survey-Teen
care utilization, barriers to care
The National Immunization Survey (NIS) is sponsored by the National Center for Immunizations and Respiratory Diseases (NCIRD) and conducted jointly by
NCIRD and the National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention. The NIS is a list-assisted random-digit-dialing telephone
survey teens, their parents, and with permission, the teen’s health care provider.
Last Updated on August 19, 2015
Data Source Name
National Survey of
Ambulatory Surgery
Most Precise Level
of Geography
Most recent year of
data available
Region/ MSA
2006
Data Element categories
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.
The National Survey of Ambulatory Surgery (NSAS) is the only national study of ambulatory surgical care in hospital-based and freestanding ambulatory surgery
centers (ASCs). The NSAS was first conducted from 1994 to 1996, but it was discontinued due to lack of resources. The NSAS was conducted again in 2006.
Efforts are now underway to include ambulatory surgery centers in the National Hospital Ambulatory Medical Care Survey (NHAMCS). The NHAMCS website
provides more information on the efforts
Asthma Call Back
State
2012
Current/former asthma status, doctors visits, asthma management, medication use,
Survey
lifestyle effects
The Asthma Call-back Survey (ACBS) is an in-depth asthma survey developed and funded by the Air Pollution and Respiratory Health Branch (APRHB) in the
National Center for Environmental Health (NCEH). It is conducted with Behavioral Risk Factor Surveillance System Survey (BRFSS) respondents who report an
asthma diagnosis.
Compressed Mortality
County
2013
Geographic location, age, race gender, ICD code for underlying cause of death
File
The Compressed Mortality File (CMF) is comprised of a county-level national mortality file and a corresponding county–level national population file. The
mortality file of the CMF contains a select subset of the variables contained in the detailed annual mortality files. Currently, the CMF spans the years 19682013 and is divided into four parts: 1968-78, 1979-88, 1989-98, and 1999-2013. An application process is required to obtain data after 1989.
Behavioral Risk Factors
State
2013
Demographics, health behaviors, chronic disease presence
Surveillance System
The BRFSS objective is to collect uniform, state-specific data on preventive health practices and risk behaviors that are linked to chronic diseases, injuries, and
preventable infectious diseases that affect the adult population.
Last Updated on August 19, 2015
AHRQ Secondary Data Sources
Data Source Name
Most Precise Level of
Geography
State and metro area
Most recent year
of data
2013
Data Element categories
Medical Expenditures
Access, disparities, health care, prescription drugs, expenditures, mental health,
Panel Survey
obesity
The Medical Expenditure Panel Survey (MEPS) is a set of large-scale surveys of families and individuals, their medical providers, and employers across the United
States. MEPS is the most complete source of data on the cost and use of health care and health insurance coverage.
Nationwide Inpatient
44 states and 1000+
2012
Primary and secondary diagnosis, admission/discharge statuses, demographics,
Sample (NIS)
hospitals
payment source, charges, LOS, Hospital characteristics
The NIS is the largest all payer inpatient care database in the United States containing discharge information from 1,050 hospitals in 44 states (20% of community
hospitals nationwide).This database allows for identification, tracking and analyzing national trends in health care utilization, access, charges, quality and
outcomes. Data has been collected from 1988-2012 thus far.
Nationwide Emergency
29 million records and
2012
Primary and secondary diagnoses, discharge status, patient demographics,
Department Sample
964 hospitals in 29
payment source, ED charges, Hospital characteristics
states (including IL)
The Nationwide Emergency Department Sample (NEDS) is one in a family of databases and software tools developed as part of the Healthcare Cost and
Utilization Project (HCUP), a Federal-State-Industry partnership sponsored by the Agency for Healthcare Research and Quality. HCUP data inform decision-making
at the national, State, and community levels.
Kids’ Inpatient Database
44 state In Patient data2012
Primary and secondary diagnosis, admission/discharge statuses, demographics,
4,100+ hospital
payment source, charges, LOS, Hospital
The Kids' Inpatient Database (KID) is a unique and powerful database of hospital inpatient stays for children. The KID was specifically designed to permit
researchers to study a broad range of conditions and procedures related to child health issues. Researchers and policymakers can use the KID to identify, track,
and analyze national trends in health care utilization, access, charges, quality, and outcomes.
State Inpatient Database
44 state Inpatient
2012
Primary and secondary diagnosis, admission/discharge statuses, demographics,
Hospital data
payment source, charges, LOS, Hospital characteristics
The State Inpatient Databases (SID) are a powerful set of hospital databases from data organizations in participating States.
 The SID contain the universe of the inpatient discharge abstracts in participating States, translated into a uniform format to facilitate multi-State
comparisons and analyses.
 Together, the SID encompass about 90 percent of all U.S. community hospital discharges. Some States include discharges from specialty facilities, such as
acute psychiatric hospitals.
 The SID contain a core set of clinical and nonclinical information on all patients, regardless of payer, including persons covered by Medicare, Medicaid,
private insurance, and the uninsured.
In addition to the core set of uniform data elements common to all SID, some include other elements, such as the patient's race.
State Ambulatory Surgery
28 states ambulatory
2013
2009 Primary and secondary diagnosis, admission/discharge statuses,
Database
surgery database: some
demographics, payment source, charges, LOS, Hospital characteristics
Last Updated on August 19, 2015
Data Source Name
Most Precise Level of
Most recent year
Data Element categories
Geography
of data
hospital identification
when linked with ARF
The State Ambulatory Surgery Databases (SASD) are a powerful set of databases, from data organizations in participating States, that capture surgeries
performed on the same day in which patients are admitted and released. SASD data are available through the HCUP Central Distributor.
 The SASD contain the ambulatory surgery encounter abstracts in participating States, translated into a uniform format to facilitate multi-state
comparisons and analyses.
 All of the databases include abstracts from hospital-affiliated ambulatory surgery sites. Some contain the universe of ambulatory surgery encounter
abstracts for that State, including records from both hospital-affiliated and freestanding surgery centers. Composition and completeness of data files may
vary from State to State.
 The SASD contain a core set of clinical and non-clinical information on all patients, regardless of payer, including persons covered by Medicare, Medicaid,
private insurance, and the uninsured.
In addition to the core set of uniform data elements common to all SASD, some include other elements, such as the patient's race.
State Emergency
27 states; some hospital
2013
2009 Primary and secondary diagnosis, admission/discharge statuses,
Department Databases
identification when
demographics, payment source, charges, LOS, Hospital characteristics
linked with ARF
The State Emergency Department Databases (SEDD) are a powerful set of databases, from data organizations in participating States, that capture discharge
information on all emergency department visits that do not result in an admission. Information on patients initially seen in the emergency room and then
admitted to the hospital is included in the State Inpatient Databases (SID). SEDD data files beginning in data year 1999 are available through the HCUP Central
Distributor.
 The SEDD contain the emergency department encounter abstracts in participating States, translated into a uniform format to facilitate multi-state
comparisons and analyses.
 All of the databases include abstracts from hospital-affiliated emergency department sites. Composition and completeness of data files may vary from
State to State.
 The SEDD contain a core set of clinical and non-clinical information on all patients, regardless of payer, including persons covered by Medicare, Medicaid,
private insurance, and the uninsured.
In addition to the core set of uniform data elements common to all SEDD, some State data include other elements, such as the patient's race.
Last Updated on August 19, 2015
National Cancer Institute Secondary Data Sources
Data Source Name
Source
Surveillance Epidemiology and End
Results (SEER)
NCI
Most Precise Level of
Geography
County or City dependent
on location
Most recent year of data
Data Element categories
2012
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.
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) is an authoritative source of information on cancer
incidence and survival in the United States. SEER currently collects and publishes cancer incidence and survival data from population-based cancer registries
covering approximately 28 percent of the US population.
The SEER Program registries routinely collect data on patient demographics, primary tumor site, tumor morphology and stage at diagnosis, first course of
treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes
stage of cancer at the time of diagnosis and patient survival data.
SEER-Medicare Linked Database
NCI
County or City dependent
2012
Clinical, demographic, cause of
on location
death, and Medicare claim
information for cancer patients
The SEER-Medicare data reflect the linkage of two large population-based sources of data that provide detailed information about Medicare beneficiaries with
cancer. The data come from the Surveillance, Epidemiology and End Results (SEER) program of cancer registries that collect clinical, demographic and cause of
death information for persons with cancer and the Medicare claims for covered health care services from the time of a person's Medicare eligibility until death.
The linkage of these two data sources results in a unique population-based source of information that can be used for an array of epidemiological and health
services research. For example, investigators using this combined dataset have conducted studies on patterns of care for persons with cancer before a cancer
diagnosis, over the period of initial diagnosis and treatment, and during long-term follow-up. Investigators have also examined the use of cancer tests and
procedures and the costs of cancer treatment.
SEER-Medicare Health Outcomes
NCI
County or City dependent
2013
Clinical, demographic, cause of
Survey
on location
death, and health related quality
of life of cancer patients with
Medicare
The SEER-MHOS database links two large population-based sources of data that provide detailed information about elderly persons with cancer. The data come
from the Surveillance, Epidemiology and End Results (SEER) program of cancer registries that collect clinical, demographic and cause of death information for
persons with cancer and the Medicare Health Outcomes Survey (MHOS) that provides information about the health-related quality of life (HRQOL) of Medicare
Advantage Organization (MAO) enrollees.
Last Updated on August 19, 2015
Data Source Name
Source
Most Precise Level of
Geography
County or City Dependent
on location
Most recent year of data
Data Element categories
National Longitudinal Mortality
NCI
2011
Demographics, socioeconomic
Study (NLMS) and linked SEERdata, cancer incidence and
NLMS Database
mortality.
The NLMS combines sociodemographic data, collected by the U.S. Census Bureau via in-person and telephone interviews as a part of the Current Population
Surveys (CPS), with cause of death information from official state records. The NLMS database includes approximately 4.0 million persons, and cause of death
information on over 450,000.
The linked SEER-NLMS database is designed to expand opportunities for analyzing socioeconomic differentials in cancer incidence, survival, and tumor
characteristics based on self-reported demographic and socioeconomic factors.
Cancer Data Access System
NCI
Study Center
2009
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
The National Lung Screening Trial (NLST) was a randomized controlled trial to determine whether screening for lung cancer with low-dose helical computed
tomography (CT) reduces mortality from lung cancer in high-risk individuals relative to screening with chest radiography. Approximately 54,000 participants were
enrolled between August 2002 and April 2004. A trial-wide database is available for download from this website. It contains detailed data on events occurring
through December 31, 2009. No further data collection is ongoing.
The Prostate, Lung, Colorectal, and Ovarian Cancer Screening Trial is a large scale, randomized study to determine whether certain screening tests will reduce the
number of deaths from these cancers. PLCO is being conducted at ten sites, geographically and demographically disparate, around the U.S. The Trial enrolled
approximately 155,000 male and female participants between the ages of 55 and 74 from 1993 to 2001.
Health Information National Trends
NCI
regional
2013
Health information sources,
Survey
prevention behaviors, cancer
knowledge, etc
The HINTS data collection program was created to monitor changes in the rapidly evolving field of health communication. Survey researchers are using the data
to understand how adults 18 years and older use different communication channels, including the Internet, to obtain vital health information for themselves and
their loved ones. Program planners are using the data to overcome barriers to health information usage across populations, and obtaining the data they need to
create more effective communication strategies. Finally, social scientists are using the data to refine their theories of health communication in the information
age and to offer new and better recommendations for reducing the burden of cancer throughout the population. Hints data are available for public use.
Last Updated on August 19, 2015
Substance Abuse and Mental Health Services Administration Sources
Data Source Name
National Survey on Drug Use and
Health
Most Precise Level of
Geography
National
Most recent year of data
2013
Data Element categories
Demographics, alcohol, tobacco, and illegal drug use
SAMHSA's National Survey on Drug Use & Health is the primary source of information on the prevalence, patterns, and consequences of alcohol, tobacco, and
illegal drug use and abuse in the general U.S. civilian non institutionalized population, age 12 and older.
National Survey of Substance
State
2011
Ownership, services offered, types of treatment, # of clients
Abuse Treatment Services
and beds, programs offered, medications prescribed and
dispensed
The National Survey of Substance Abuse Treatment Services (N-SSATS) is designed to collect information from all facilities in the United States, both public and
private, that provide substance abuse treatment. N-SSATS provides the mechanism for quantifying the dynamic character and composition of the United States
substance abuse treatment delivery system. The objectives of N-SSATS are to collect multipurpose data that can be used to assist the Substance Abuse and Mental
Health Services Administration (SAMHSA) and state and local governments in assessing the nature and extent of services provided and in forecasting treatment
resource requirements, to update SAMHSA's Inventory of Substance Abuse Treatment Services (I-SATS), to analyze general treatment services trends, and to
generate the National Directory of Drug and Alcohol Abuse Treatment Programs and its online equivalent, the Substance Abuse Treatment Facility Locator.
Treatment Episode DataMetropolitan/Micropolitan
2012
Client characteristics, service setting, prior treatment,
Admissions
Area
substances abused
The Treatment Episode Data Set -- Admissions (TEDS-A) is a national census data system of annual admissions to substance abuse treatment facilities. TEDS-A
provides annual data on the number and characteristics of persons admitted to public and private substance abuse treatment programs that receive public
funding. The unit of analysis is a treatment admission. TEDS consists of data reported to state substance abuse agencies by the treatment programs, which in turn
report it to SAMHSA.
Last Updated on August 19, 2015
Other Sources
Data Source Name
Illinois State Cancer Registry
Source
Most recent year of data
2012
Data Element categories
Data on cancer type, stage,
gender, race, incidence, mortality
etc. The more local the data, the
less specific the data.
IDPH collects data from all cancer cases in the state—stage, method of diagnosis, type, gender, race, geographic location etc. The publicly available data are less
specific, the more precise the geographic location.
National Survey of Children with
CAHMI
State
2009-2010
Decision making about services,
Special Health Care Needs
coordinated, ongoing
comprehensive care, adequate
insurance, early and continuous
screening, community based
services availability, receipt of
services to make transition into
adult life
The primary goals of this module are to assess the prevalence and impact of special health care needs among children in all 50 States and the District of Columbia
and evaluate change since 2001. This survey explored the extent to which children with special health care needs (CSHCN) have medical homes, adequate health
insurance, and access to needed services. Other topics include functional difficulties, care coordination, satisfaction with care, and transition services. Interviews
were conducted with parents or guardians who know about the child’s health. More than 3,000 households with children were screened to identify 750 CSHCN in
each State and DC. A national referent sample of approximately 5,000 children without special health care needs was also selected, so that characteristics of
CSHCN may be compared with characteristics of children without special health care needs.
Medicare/Medicaid
CMS
Zip code
2013
Beneficiary-specific, providerspecific including claims and
clinical data for varying types of
care including inpatient,
outpatient , hospice, home health
and skilled nursing facility
Data are available from Medicare including beneficiary specific and provider specific data on claims and clinical activity/procedures. Identifiable, limited, and
non-identifiable datasets are available that include specific datasets on different types of care received (e.g. skilled nursing). Obtaining these data require an
application and fee through RESDAC.
Survey of Adult Transition and
DHHS
State
2007
Routine care, specialist care,
Health
dental, RXs, mental healthcare,
health insurance, accessibility
This nationwide survey looks at the health of young people who were 19 to 23 years old in 2007, whose parents were originally interviewed in 2001 when the
Last Updated on August 19, 2015
IDPH
Most Precise Level of
Geography
Zip code level
Data Source Name
Most Precise Level of
Most recent year of data
Data Element categories
Geography
subjects were 14 to 17 years old. The primary goals of this follow-up survey are to examine their current health care needs and transition from pediatric health
care providers to adult health care providers.
National Sample Survey of
education and training in nursing,
HRSA
County
2008
Registered Nurses
professional nursing
certifications, education and
workforce participation prior to
becoming a registered nurse,
current and recent workforce
participation, income,
demographic characteristics
National Cancer Database
Source
Commission on
Census Division
2012
Patient characteristics, facility
Cancer, American
characteristics, staging, treatment
College of Surgeons,
and outcome data
American Cancer
Society
The National Cancer Data Base (NCDB), a joint program of the Commission on Cancer (CoC) of the American College of Surgeons (ACoS) and the American Cancer
Society (ACS), is a nationwide oncology outcomes database for more than 1,500 Commission-accredited cancer programs in the United States and Puerto Rico.
Some 70 percent of all newly diagnosed cases of cancer in the United States are captured at the institutional level and reported to the NCDB. To receive these
data, the applicant must have affiliation with a CoC hospital.
Last Updated on August 19, 2015