We feature system-level data sets that include diagnoses or other identifiers of people with mental illness. We focus on public use data sets, but also include government and proprietary data that are restricted, requiring researchers to pay for data use licenses and/or submit formal applications to access protected information.
For each data set, the source organization and website are provided, along with a brief description of the data, the mental illness diagnostic coding system or other mental illness identifiers used, links to sample publications based on the data, a checklist of which disability, employment, and physical health measures also are included, and a link to the site where the data and instructions for use can be accessed.
For each data set, the source organization and website are provided, along with a brief description of the data, the mental illness diagnostic coding system or other mental illness identifiers used, links to sample publications based on the data, a checklist of which disability, employment, and physical health measures also are included, and a link to the site where the data and instructions for use can be accessed.
IBM MarketScan Research Databases
Description
MarketScan, a warehouse of proprietary health research databases developed and maintained by Truven Health AnalyticsTM. Marketscan databases are based on private and public health insurance claims.
Measure of Mental Illness Used
Relevant Content
Mental Illness, Disability, Physical Health
Access to an Article Using MarketScan Data
A study of factors associated with 30-day readmission following medical hospitalization among Medicaid recipients with mental illnesses.
Cook, J. A., Burke-Miller, J. K., Jonikas, J. A., Aranda, F., & Santos, A. (2020). Factors associated with 30-day readmissions following medical hospitalizations among Medicaid beneficiaries with schizophrenia, bipolar disorder, and major depressive disorder. Psychiatry Research, 113168.
Cook, J. A., Burke-Miller, J. K., Jonikas, J. A., Aranda, F., & Santos, A. (2020). Factors associated with 30-day readmissions following medical hospitalizations among Medicaid beneficiaries with schizophrenia, bipolar disorder, and major depressive disorder. Psychiatry Research, 113168.
Access to MarketScan Data
Visit the IBM MarketScan Research Databases web site to learn more about their databases and licensing agreements.
National Mental Health Services Survey (N-MHSS)
Funded by the Substance Abuse and Mental Health Services Administration
Description
An annual survey of all known mental health treatment facilities in the United States, both public and private (N>15,000), including the type of facility, ownership, service settings, specialty services, and specially designed programs offered, as well as basic contact information. In every other year, beginning in 2014, the survey also collects statistical information on the numbers and demographic characteristics of persons served in these treatment facilities as of a specified survey reference date. Not longitudinal, but years can be compared for population trends.
Measure of Mental Illness Used
Relevant Content
Mental Illness
Access to an Application of the N-MHSS
Data were used to populate the SAMHSA Behavioral Health Treatment Locator.
SAMHSA Treatment Locator
SAMHSA Treatment Locator
Access to the N-MHSS
Public use data and information are available. Visit the SAMHDA.
National Ambulatory Medical Care Survey (NAMCS)
Administered by the Centers for Disease Control and Prevention
Description
NAMCS uses a multistage random probability sample probability sample of >50,000 visits to >3,000 office-based physicians and health-care providers in community health centers. Sample data are weighted to produce national estimates that describe the provision and use of ambulatory medical care services in the United States. Public use data files are released annually and include a visit statistical weight and (since 2005) a physician statistical weight. Data include reasons for visit, physician diagnosis, medications, treatment, referrals, and provider type. Not longitudinal, but years can be compared for population trends.
Measure of Mental Illness Used
Relevant Content
Mental Illness, Physical Health
Access to an Article Using the NAMCS
A study of mental health treatment variation associated with provider or patient characteristics.
Lagomasino, et al. (2011). Racial-ethnic composition of provider practices and disparities in treatment of depression and anxiety, 2003-2007. Psychiatric Services, 62(9), 1019-1025.
Lagomasino, et al. (2011). Racial-ethnic composition of provider practices and disparities in treatment of depression and anxiety, 2003-2007. Psychiatric Services, 62(9), 1019-1025.
Access to the NAMCS
Public use files and information are available. Visit the CDC web site.
National Hospital Ambulatory Medical Care Survey (NHAMCS)
Administered by the Centers for Disease Control and Prevention
Description
The NHAMCS is similar to the NAMCS, but based on a national sample of >24,000 visits to the emergency departments, outpatient departments, and ambulatory surgery centers of >300 non-institutional general and short-stay hospitals. Not longitudinal, but years can be compared for population trends.
Measure of Mental Illness Used
Relevant Content
Mental Illness, Physical Health
Access to an Article Using the NHAMCS
A study of trends in psychiatric treatment over time.
Tran, et al. (2012) National trends in pediatric use of anticonvulsants. Psychiatric Services, 63(11), 1095-1101.
Tran, et al. (2012) National trends in pediatric use of anticonvulsants. Psychiatric Services, 63(11), 1095-1101.
Access to the NHAMCS
Public use files and information are available. Visit the CDC web site.
National Hospital Discharge Survey (NHDS)
Administered by the Centers for Disease Control and Prevention
Description
The NHDS (conducted annually from 1965-2010) was national random probability sample survey designed to meet the need for information on characteristics of over 35 million inpatient discharges from non-federal, short-stay hospitals in the United States. NHDS data collection is now incorporated in the NHCS. Not longitudinal, but years can be compared for population trends.
Measure of Mental Illness Used
Relevant Content
Mental Illness, Physical Health
Access to an Article Using the NHDS
An analysis to identify the prevalence of co-morbid mental health conditions among people discharged from hospital stays.
Weber et al. (2009). Psychiatric and general medical conditions comorbid with schizophrenia in the NHDS. Psychiatric Services 60(8), 1059-1067.
Weber et al. (2009). Psychiatric and general medical conditions comorbid with schizophrenia in the NHDS. Psychiatric Services 60(8), 1059-1067.
Access to the NHDS
Public use files and information are available. Visit the CDC web site.
National Hospital Care Survey (NHCS)
Administered by the Centers for Disease Control and Prevention
Description
NHCS is a newer survey of a random probability sample that integrates inpatient data formerly collected by the NHDS with the emergency department, outpatient, and ambulatory surgery center data collected by the NHAMCS. Not longitudinal, but years can be compared for population trends.
Measure of Mental Illness Used
Relevant Content
Mental Illness, Physical Health
Access to an Article Using the NHCS
National Health Statistics Report assessing multiple types of care (inpatient, emergency, and outpatient) received by individuals with specific mental illness diagnoses.
Levant et al. (2016). NHCS Demonstration Projects: Traumatic Brain Injury. CDC: National Health Statistics Report, #97.
Levant et al. (2016). NHCS Demonstration Projects: Traumatic Brain Injury. CDC: National Health Statistics Report, #97.
Access to the NHCS
Public use data not yet available. Restricted data available via proposal and review. Visit the RDC.
National Home and Hospice Care Survey (NHHCS)
Administered by the Centers for Disease Control and Prevention
Description
The NHHCS is a nationally representative random sample survey of U.S. home health and hospice agencies providing data on patient (>4,000) and provider (>1,000) characteristics and services. The NHHCS was first conducted in 1992 and was repeated in 1993, 1994, 1996, 1998, 2000, and 2007.
Measure of Mental Illness Used
Relevant Content
Mental Illness, Physical Health
Access to an Article Using the NHHCS
A study of whether use of home health or hospice care differ among women and men.
Jones, et al. (2012). Characteristics and use of home health care by men and women aged 65 and over. National Health Statistics Report, No. 52.
Jones, et al. (2012). Characteristics and use of home health care by men and women aged 65 and over. National Health Statistics Report, No. 52.
Access to the NHHCS
Public use data files and information are available. Visit the CDC web site.
National Survey of Residential Care Facilities (NSRCF)
Administered by the Centers for Disease Control and Prevention
Description
The NSRCF was the first survey of residential care providers, administered one time to a representative sample of 2,300 facilities and >8,000 residents in 2010. Settings included residential care facilities; assisted living residences; board and care homes; congregate care; enriched housing programs; homes for the aged; personal care homes; and shared housing establishments that are licensed, registered, listed, certified, or otherwise regulated by a state.
Measure of Mental Illness Used
Mental Illness, Disability, Physical Health
Relevant Content
Resident self-reported diagnoses
Access to an Article Using the NSRCF
A study of the characteristics of residential facilities with high proportions of residents with mental illnesses in 2010.
Dementia Special Care Units in Residential Care Communities: United States 2010. NCHS Data Brief No. 134, November 2013.
Dementia Special Care Units in Residential Care Communities: United States 2010. NCHS Data Brief No. 134, November 2013.
Access to the NSRCF
Public use data files and information are available. Visit the CDC web site.
National Study of Long-Term Care Providers (NSLTCP)
Administered by the Centers for Disease Control and Prevention
Description
Starting in 2012, the biennial NSLTCP uses survey data on the >4,000 residential care communities and >3,000 adult day services facilities, and CMS administrative data on the home health, nursing home, and hospice care sectors. Not longitudinal, but years can be compared for population trends.
Measure of Mental Illness Used
Facility estimate of proportion of clients with severe mental illness or depression
Relevant Content
Mental Illness, Disability, Physical Health
Access to an Article Using the NSLTCP
National estimates of selected characteristics of participants in adult day services centers and comparisons of these characteristics by center ownership type.
Park-Lee, E., Harris-Kojetin, L. D., Rome, V., & Lendon, J. P. (2015). Variation in Adult Day Services Center Participant Characteristics, by Center Ownership; United States, 2014. US Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics.
Park-Lee, E., Harris-Kojetin, L. D., Rome, V., & Lendon, J. P. (2015). Variation in Adult Day Services Center Participant Characteristics, by Center Ownership; United States, 2014. US Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics.
Access to the NSLTCP
Restricted survey data from 2012 and 2014 are available for use by approved researchers in the NCHS Research Data Center. Visit the RDC.
National Nursing Home Survey (NNHS)
Administered by the Centers for Disease Control and Prevention
Description
The NNHS was a precursor to the NSLTCP, administered intermittently from 1973-2004.
Measure of Mental Illness Used
Relevant Content
Mental Illness, Disability, Physical Health
Access to an Article Using the NNHS
An analysis of whether long-term care patients with mental illness diagnoses differed in use of advance directives in 2004 and earlier.
Use of Advance Directives in Long-term Care Populations. NCHS Data Brief No. 54, January 2011
Use of Advance Directives in Long-term Care Populations. NCHS Data Brief No. 54, January 2011
Access to the NNHS
Public use data files and information are available. Visit the CDC web site.
National Vital Statistics System (NVSS) and the 1993 National Mortality Followback Survey (NMFS)
Administered by the Centers for Disease Control and Prevention
Description
The Mortality Followback Survey Program, begun in the 1960's by the National Center for Health Statistics (NCHS), uses a representative sample (>9,000) of >2 million United States residents who die in a given year to supplement death certificate data available in the NVSS with information from the next of kin or another person familiar with the decedent's life history. This information, sometimes enhanced by administrative records, provides a unique opportunity to study the etiology of disease, demographic trends in mortality, and other health issues. Not longitudinal, but years can be compared for population trends.
Measure of Mental Illness Used
Mental disorders (codes 290-319) as a group, and 5 subgroups:
1. Alcoholic psychoses (291)
2. All other psychoses (292-299)
3. Alcohol dependence (303)
4. Drug dependence (304)
5. Other neurotic, personality and non-psychotic mental disorders (300-302,305-316)
1. Alcoholic psychoses (291)
2. All other psychoses (292-299)
3. Alcohol dependence (303)
4. Drug dependence (304)
5. Other neurotic, personality and non-psychotic mental disorders (300-302,305-316)
Relevant Content
Mental Illness, Disability, Employment, Physical Health
Access to an Article Using the NVSS & NMFS
A study of substance use behavior in relation to underlying causes of death among decedents with diagnosed mental disorders.
Li et al. (1994). Drinking behavior in relation to cause of death among U.S. adults. Am J Public Health, 84(9); 1402-1406.
Li et al. (1994). Drinking behavior in relation to cause of death among U.S. adults. Am J Public Health, 84(9); 1402-1406.
Access to the NVSS & NMFS
Public use data files and information are available. Visit the CDC web site.
Medical Expenditure Panel Survey (MEPS), Medical Provider Component
Funded by the U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality
Description
The MEPS Medical Provider Component (MPC) collects data from a sample of providers (physicians, hospitals, home health agencies, and pharmacies) who provided medical care to MEPS Household Component respondents. The MEPS Medical Provider Component is designed for use in conjunction with the Household Component. The detailed information on payments, procedure codes, and diagnostic codes support a variety of analyses not possible with the Household Component data alone. Sample size ranges from 25,000-45,000 per year. Longitudinal 24 month panels and population trends can be compared over multiple years.
Measure of Mental Illness Used
Relevant Content
Mental Illness, Physical Health
Access to an Article Using the MEPS, Medical Provider Component
An analysis of health care utilization and cost associated with mental health conditions and co-morbid conditions.
Egede, L., et al. (2002). Comorbid depression is associated with increased health care use and expenditures in individuals with diabetes. Diabetes Care, 25(3), 464-470.
Egede, L., et al. (2002). Comorbid depression is associated with increased health care use and expenditures in individuals with diabetes. Diabetes Care, 25(3), 464-470.
Access to the MEPS
Restricted data files are available. Visit the AHRQ-MEPS web site.
CMS Centers for Medicare and Medicaid Research Data Assistance Center (ResDAC)
Administered by the Centers for Medicare and Medicaid
Description
The Research Data Assistance Center (ResDAC) is a CMS contractor that provides assistance to academic, government and non-profit researchers interested in using extensive Medicare and/or Medicaid data for their research. While some data are public use, most are restricted or limited use administrative and claims data. Some researchers are able to access data in a virtual environment called the CMS Virtual Research Data Center (VRDC).
Measure of Mental Illness Used
Relevant Content
Mental Illness, Disability, Employment, Physical Health
Access to an Article Using the ResDAC data
A look at the impact of policy change on psychiatric hospital admissions.
Cotterill, P. (2008). Medicare Psychiatric Admissions, 1987-2004: Does the past offer insights for the future? Health Affairs, 27(4), 1132-1139.
Cotterill, P. (2008). Medicare Psychiatric Admissions, 1987-2004: Does the past offer insights for the future? Health Affairs, 27(4), 1132-1139.
Access to the ResDAC
Restricted data files are available. Visit ResDAC.
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