CDC Secondary Database Sources

Transcription

1 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 wzahnd@siumed.edu or (217) 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 Most recent year of data available 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. 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 Medical Care Survey National 2011 Provider characteristics and patient characteristics (including demographics, 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 Survey National 2010 Diagnosis, Payment, and Admission Type

2 Data Source Name Most Precise Level of Most recent year of data available 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 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 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 System State(or more specific) 2010 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 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 Long- Term Care Providers National 2014 Background information, service offered, staff profile, resident profile, record 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 Survey National 2012 Immunization status of preschool children and adolescents, demographics, family 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 Survey-Teen State 2013 Immunization status of teens aged 13-17, demographics, family 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 teens, their parents, and with permission, the teen s health care provider.

3 Data Source Name Most Precise Level of Most recent year of data available National Survey of Ambulatory Surgery Region/ MSA 2006 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 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 Survey State 2012 Current/former asthma status, doctors visits, asthma management, medication use, 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 and is divided into four parts: , , , and An application process is required to obtain data after 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.

4 AHRQ Secondary Data Sources Data Source Name Most Precise Level of Most recent year of data Medical Expenditures Panel Survey State and metro area 2013 Access, disparities, health care, prescription drugs, expenditures, mental health, 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 Sample (NIS) 44 states and hospitals 2012 Primary and secondary diagnosis, admission/discharge statuses, demographics, 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 thus far. Nationwide Emergency Department Sample 29 million records and 964 hospitals in 29 states (including IL) 2012 Primary and secondary diagnoses, discharge status, patient demographics, payment source, ED charges, Hospital characteristics 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 data- 4,100+ hospital 2012 Primary and secondary diagnosis, admission/discharge statuses, demographics, 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 Hospital data 2012 Primary and secondary diagnosis, admission/discharge statuses, demographics, 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 Database 28 states ambulatory surgery database: some Primary and secondary diagnosis, admission/discharge statuses, demographics, payment source, charges, LOS, Hospital characteristics

5 Data Source Name Most Precise Level of Most recent year 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 Department Databases 27 states; some hospital identification when linked with ARF Primary and secondary diagnosis, admission/discharge statuses, demographics, payment source, charges, LOS, Hospital characteristics 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.

6 National Cancer Institute Secondary Data Sources Data Source Name Source Most Precise Level of Surveillance Epidemiology and End Results (SEER) NCI County or City dependent on location Most recent year of data 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 on location 2012 Clinical, demographic, cause of 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 Survey NCI County or City dependent on location 2013 Clinical, demographic, cause of 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.

7 Data Source Name Source Most Precise Level of National Longitudinal Mortality Study (NLMS) and linked SEER- NLMS Database NCI County or City Dependent on location Most recent year of data 2011 Demographics, socioeconomic data, cancer incidence and 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 A trial-wide database is available for download from this website. It contains detailed data on events occurring through December 31, 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 Health Information National Trends Survey NCI regional 2013 Health information sources, 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.

8 Substance Abuse and Mental Health Services Administration Sources Data Source Name Most Precise Level of Most recent year of data National Survey on Drug Use and Health National 2013 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 Data- Metropolitan/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.

9 Other Sources Data Source Name Source Most Precise Level of Most recent year of data Illinois State Cancer Registry IDPH Zip code level 2012 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 Special Health Care Needs CAHMI State 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 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 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 Health DHHS State 2007 Routine care, specialist care, 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

10 Data Source Name Source Most Precise Level of Most recent year of data 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 Registered Nurses HRSA County 2008 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 Commission on Cancer, American College of Surgeons, American Cancer Society Census Division 2012 Patient characteristics, facility characteristics, staging, treatment and outcome data 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.