Population-based Surveys & Databases

Service Level Data Sources Used to Estimate Direct Medical Health Care Costs
Data source Description Diagnosis information available Cost elements
Inpatient Hospitalization Outpatient Services Pharmacy and Equipment
Healthcare Costs and Utilization Program (HCUP) - Nationwide Inpatient Sample (NIS) The largest all-payer inpatient care database with all discharge data from sampled hospitals. Includes diagnoses, procedures, admission and discharge status, patient demographics, expected payment source, total charges, length of stay, and hospital characteristics.
Procedure or diagnosis codes
   
HCUP Kids' Inpatient Database (KID) The only all-payer inpatient care database for children. Includes diagnoses, procedures, admission and discharge status, patient demographics, expected payment source, total charges, length of stay, and hospital characteristics.
Procedure or diagnosis codes
   
HCUP State Ambulatory Surgery Databases (SASD) Contains ambulatory surgery encounter abstracts in participating states. All databases include abstracts from hospital-affiliated ambulatory surgery sites and some contain the universe of ambulatory surgery abstracts for that state. Includes diagnoses, procedures, discharge status, patient demographics expected payment source, total charges, and hospital identifiers.
Procedure or diagnosis codes
   
HCUP State Emergency Department Databases (SEDD) Captures discharge information on all emergency department visits in participating states that do not result in an admission. Includes diagnoses, procedures, patient demographics, expected payment source, total charges, and hospital identifiers.
Procedure or diagnosis codes
   
HCUP - State Inpatient Databases (SID) Contains the universe of inpatient discharge abstracts in participating states, about 90 percent of all US community hospital discharges. Includes diagnoses, procedures, admission and discharge status, patient demographics, expected payment source, total charges, length of stay, and hospital characteristics.
Procedure or diagnosis codes
   
Medicare Diagnosis Related Group (DRG) fee schedule Developed as part of the Medicare prospective payment system to classify hospital cases into one of approximately 500 groups, expected to have similar hospital resource use. DRGs are assigned by a "grouper" program based on ICD diagnoses, procedures, age, sex, and the presence of complications or comorbidities.
DRG codes
   
Medicare Hospital Outpatient Prospective Payment System (OPPS) File Medicare file contains select claim level data and is derived from hospital outpatient prospective payment system claims.
Procedure or diagnosis codes
   
Paradigm Health / Alere Discharge Planning Tools Alere contains a discharge planning tool.
DRG codes
   

[Return to Top]

Individual or Patient Level Data Sources Used to Estimate Direct Medical Health Care Costs: Surveys
Data Source Population Diagnosis information available Cost Elements
Inpatient Hospitalization Physician and other outpatient services Outpatient pharmacy Out-of-pocket Non-medical
Consumer Expenditure Survey (CES) Nationally representative sample of civilian, non-institutionalized consumer units (e.g., households). Information is obtained through a quarterly personal interview and weekly diaries.
Self-report
       
Kaiser Women's Health Study Nationally representative sample of civilian, non-institutionalized women ages 18 to 64. The survey was conducted via telephone interview.
Self-report
       
Medical Expenditure Panel Survey, Household and Provider Components (MEPS) Nationally representative sample of the US non-institutionalized population. Survey data were collected through personal interviews. MEPS also collects data from medical providers which supplements and/or replaces information received from the household respondents about the health care that was provided to the sampled household members
Self-report and chart or medical record
National Home and Hospice Care Survey (NHHCS) Nationally representative sample of the US civilian, non-institutionalized population obtaining services from a home or hospice care agency licensed or certified by Medicare or Medicaid. Data are collected through personal interviews with administrators and staff.
Chart or medical record
     
National Mortality Followback Survey (NMFS) National sample of death certificates for individuals aged 15 years and over who were residing and died in the United States. Survey is completed by next of kin or another person familiar with the decedent's life history.
Proxy report
     
National Nursing Home Survey (NNHS) Nationally representative sample of the US civilian, non-institutionalized population obtaining services from a nursing home certified by Medicare or Medicaid, or having a state license to operate as a nursing home. Data is obtained through interviews.
Chart or medical record
   
National Survey of Ambulatory Surgery (NSAS) Survey of patients scheduled for surgical and non-surgical procedures performed in hospital-based and freestanding ambulatory surgery centers.
chart or medical record
     
Panel Study of Income Dynamics (PSID) Nationally representative sample of civilian, non-institutionalized individuals and the family units in which they reside. Information was obtained via telephone interviews with computer-based instruments.
Self-report
     

[Return to Top]

Individual Level Data Sources Used to Estimate Direct Medical Health Care Costs: Administrative Data, and Registries and Surveys Linked to Administrative Data
Data source Population Diagnosis information available Cost Elements
Inpatient Hospitalization Physician and other outpatient services Outpatient pharmacy Out-of-pocket Non-medical
Blue Cross/Blue Shield Enrollees in 39 independent and locally operated health plans.
Procedure or diagnosis codes
   
Cancer Research Network (CRN)* Cancer and non-cancer patients receiving care in a consortium of 14 nonprofit research centers in integrated healthcare delivery organizations across the nation.
Registry (cancer) and procedure or diagnosis codes
   
Health and Retirement Survey (HRS) - Medicare** Total civilian non-institutionalized population age 50 and older who were enrolled in Medicare and provided personal identification data.
Self-report and procedure or diagnosis codes
   
Health Care Systems Research Network (HCSRN) Patients receiving care from any of 15 HMOs with formal recognized research capacities
Procedure or diagnosis codes
   
Human Capital Management Services (HCMS) Individuals enrolled in employer-sponsored insurance. Also includes information on sick leave, disability, and productivity.
Procedure or diagnosis codes
IMS Health Plan Data Enrollees in 97 health plans nationwide
Procedure or diagnosis codes
 
Ingenix Enrollees in large geographically diverse health insurance plan
Procedure or diagnosis codes
   
Medicaid Enrollees in state-based program available only to medically needy, categorically needy or special groups. Eligibility varies state to state and group to group.
Procedure or diagnosis codes
   
Medicare Beneficiaries in Medicare program with fee-for-service coverage aged ≥65 years, <65 years with certain disabilities, or age with End-Stage Renal Disease (ESRD)
Procedure or diagnosis codes
   
Medicare Current Beneficiary Survey (MCBS)** Nationally representative sample of aged, disabled, and institutionalized Medicare beneficiaries
Self-report, chart, and procedure or diagnosis codes
MediQual / Cardinal Health Atlas System Information management system with clinical and administrative data
Procedure or diagnosis codes
     
MedMining, a Geisinger Health System business Patients of all ages in an integrated, health care system spanning 40 counties in Pennsylvania.
Procedure or diagnosis codes
National Health and Nutrition Examination Survey (NHANES) - Medicare** National sample of civilian non-institutionalized participants in NHANES who were enrolled in Medicare and provided personal identification data to NCHS.
Examination and procedure or diagnosis codes
 
National Health Interview Survey (NHIS) - Medicare** National sample of civilian non-institutionalized respondents to the NHIS who were enrolled in Medicare and provided personal identification data to NCHS.
Self-report and procedure or diagnosis codes
 
National Long Term Care Survey (NLTCS) - Medicare** Nationally representative sample of the elderly population ≥65 years enrolled in Medicare, living in the community or institutions. Data are collected through personal interviews
Self-report and procedure or diagnosis codes
 
New Beneficiary Data System - Medicare** Sample of Social Security beneficiaries who were retired or disabled workers, or other aged (i.e., wife or widow) with 10 year follow-up
procedure or diagnosis codes
   
Paradigm Health/Alere Information management system with administrative data
Procedure or diagnosis codes
   
PharMetrics (Integrated Medical and Pharmaceutical Database) Patients from over 90 health plans across the US with multiple product types (e.g., HMO, PPO), payor types (e.g., commercial, self-pay), provider specialty, and start and stop dates for plan enrollment.
Procedure or diagnosis codes
 
Premier Perspective Database Provides drug utilization, inpatient discharges and hospital outpatient visits from acute care facilities, ambulatory surgery centers and clinics.
Procedure or diagnosis codes
 
Surveillance, Epidemiology and End-Results (SEER) - Medicare* Cancer patients and non-cancer patients in a SEER region who are enrolled in Medicare fee-for-service ≥ 65 years, <65 years with certain disabilities, or any age with End-Stage Renal Disease (ESRD)
Registry (cancer) and procedure or diagnosis codes
   
The Second Longitudinal Study of Aging (LSOA II) - Medicare** Total civilian non-institutionalized population ≥ 70 years in LSOA enrolled in Medicare and provided personal identification data to NCHS
Self-report and procedure or diagnosis codes
   
Truven Health MarketScan Databases Large national claims and encounters data for individuals enrolled in employer-sponsored commercially insured and Medicare supplemental insurance. Subsets of patients may be linked to short-term disability and absenteeism data.
Procedure or diagnosis codes
United Healthcare Enrollees in large health insurance company
Procedure or diagnosis codes
   
Veterans Affairs (VA) Decision Support System and HERC average cost databases Recipients of care from the Veterans Health Administration
Procedure or diagnosis codes
   

* Data source is registry linked to administrative data.

** Data source is survey linked to administrative data.

† Data on Medicare Part D prescription drug services for 2006 will be available starting in 2009. Prior to 2006, drugs administered parenterally and their administration was covered by Medicare Part B, as were Prodrugs, the oral drug equivalent of drugs administered parenterally.

[Return to Top]

Individual Level Data Sources Used to Estimate Patient and Caregiver Time
Data source Population Diagnosis information available Time Cost Element
Nursing home stays in days Time in Outpatient care Restricted activity days Time in Home care/ Home therapy Hospice care
American Cancer Society's Quality of Life Survey for Caregivers* Panel survey of family caregivers of cancer patients identified through registries. Includes information on patient and caregiver characteristics, and average weekly hours spent caregiving. Data collected by mailed survey.
Registry (cancer)
         
Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE) Longitudinal study of prostate cancer patients in community practice. Physicians provide clinical assessment of patients during treatment, including method of diagnosis, and results of all procedures and lab tests.
Chart or medical record
 
Medicare Current Beneficiary Survey (MCBS) Nationally representative sample of aged, disabled, and institutionalized Medicare beneficiaries.
Self-report , chart, and procedure or diagnosis codes
   
Medicare Health Outcomes Survey (HOS) National survey of a random sample of Medicare beneficiaries continuously enrolled for six months or longer in managed care health plans. All plans with Medicare Advantage contracts participate.
Self-report
       
Midlife Development in the United States Survey (MIDUS) Series of national surveys of adults in midlife. Also surveys of siblings of the general population respondents, and a twin pairs sample.
Self-report
       
National Ambulatory Medical Care Survey (NAMCS) Sampled visits to US nonfederal office-based physicians primarily engaged in direct patient care. Data are recorded by physicians and staff.
Chart or medical record
       
National Caregiver Survey* National survey of caregivers providing one or more Activities of Daily Living (ADL) or Instrumental ADLs for someone aged 18 or older. Includes weekly hours spent caregiving. Data collected by telephone interview.
Self-report
         
National Comorbidity Survey (NCS) The NCS was originally fielded in 1990- 1992, and is a nationally representative mental health survey in the US with diagnostic interviews. Respondents were reinterviewed in 2001-02.
Self-report
       
National Health Interview Survey (NHIS) (Core) Nationally representative sample of US civilian non-institutionalized population. Data are collected via a personal household interview.
Self-report
       
NHIS (1992 Cancer control supplement) Nationally representative sample of US civilian non-institutionalized adults aged 18 or older. Data are collected via a personal household interview.
Self-report
       
NHIS (1994-1995 Disability Phase I supplement) Nationally representative sample of US civilian non-institutionalized children. Questions about home therapy time only for children. Data are collected via a personal household interview.
Self-report
       
National Home and Hospice Care Survey (NHHCS) National sample of home health agencies and hospices and their current and discharged patients. Data are collected by administrators and through personal interviews with staff.
Chart or medical record
     
National Hospital Ambulatory Medical Care Survey (NHAMCS) National sample of visits to emergency and outpatient departments of nonfederal general and short-stay hospitals. Data are collected by hospital staff.
Chart or medical record
       
National Mortality Followback Survey (NMFS) National sample of death certificates for individuals aged 15 years and over who were residing and died in the United States. Survey is completed by next of kin or another person familiar with the decedent's life history.
Proxy report
     
National Nursing Home Survey (NNHS) Nationally representative sample of US nursing homes, and their services, staff, and residents. Data are collected through surveys of nursing assistants and personal interviews.
Chart or medical record
       
National Survey of Ambulatory Surgery (NSAS) Ambulatory surgery cases from a nationally representative sample of nonfederal hospital-based and freestanding ambulatory surgery centers.
Chart or medical record
       

* Data collected as the total amount of time spent providing patient care and specific elements not available separately.

[Return to Top]

Alphabetical Listing of Data Sources for Estimating Health Care Costs
Data source Appendix Table Nationally Representative Longitudinal Data Available Cost of data source
Free download; or <$100 Depends on scope of project; ≥$100
American Cancer Society's Quality of Life Survey for CaregiversExternal Web Site Policy 6  
Panel
 
Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE)External Web Site Policy 6    
Cancer Research Network (CRN)External Web Site Policy 5    
Healthcare Cost and Utilization Project (HCUP) Kids' Inpatient Database (KID)External Web Site Policy 3      
HCUP Nationwide Inpatient Sample (NIS)External Web Site Policy 3    
HCUP State Ambulatory Surgery Databases (SASD)External Web Site Policy 3      
HCUP State Emergency Department Databases (SEDD)External Web Site Policy 3      
HCUP State Inpatient Databases (SID)External Web Site Policy 3      
Health Care Systems Research Network (HCSRN)External Web Site Policy 5    
Kaiser Family Foundation's Women and Health Care: A National Profile ReportExternal Web Site Policy 4    
MedicaidExternal Web Site Policy 5    
Medical Expenditure Panel Survey, Household and Provider Components (MEPS)External Web Site Policy 4
Panel
 
MedicareExternal Web Site Policy 5  
Medicare Ambulance Fee ScheduleExternal Web Site Policy 3    
Medicare Ambulatory Payment Classification (APC)External Web Site Policy 3    
Medicare Clinical Laboratory Fee ScheduleExternal Web Site Policy 3    
Medicare Current Beneficiary Survey (MCBS)External Web Site Policy 5, 6  
Medicare Diagnosis Related Group (DRG) fee scheduleExternal Web Site Policy 3    
Medicare Health Outcomes Survey (HOS)External Web Site Policy 6
Panel
 
Medicare Hospital Outpatient Prospective Payment System (OPPS) FileExternal Web Site Policy 3    
Medicare Physician Fee ScheduleExternal Web Site Policy 3    
MediQual / Cardinal Health Atlas System 5    
Medispan Drug DatabaseExternal Web Site Policy 3    
MedMining, a Geisinger Health System businessExternal Web Site Policy 5    
Midlife Development in the United States Survey (MIDUS)External Web Site Policy 6
Panel
 
National Ambulatory Medical Care Survey (NAMCS)External Web Site Policy 6    
National Health and Nutrition Examination Survey (NHANES) - MedicareExternal Web Site Policy 5  
National Health Interview Survey (NHIS) (Core)External Web Site Policy 4, 6    
NHIS, 1992 Cancer control supplementExternal Web Site Policy 6    
NHIS, 1994-1995 Disability Phase I supplementExternal Web Site Policy 6    
National Health Interview Survey (NHIS) - MedicareExternal Web Site Policy 5  
National Home and Hospice Care Survey (NHHCS)External Web Site Policy 4, 6    
National Hospital Ambulatory Medical Care Survey (NHAMCS)External Web Site Policy 6    
National Long Term Care Survey (NLTCS)External Web Site Policy 4  
National Long Term Care Survey (NLTCS) - MedicareExternal Web Site Policy 5  
National Mortality Followback Survey (NMFS)External Web Site Policy 4, 6    
National Nursing Home Survey (NNHS)External Web Site Policy 4, 6    
National Survey of Ambulatory Surgery (NSAS)External Web Site Policy 4, 6    
National Survey of America's Families (NSAF)External Web Site Policy 4    
New Beneficiary Data System - Medicare (NBDS) - MedicareExternal Web Site Policy 5  
Organization for Economic Cooperation and Development (OECD) health dataExternal Web Site Policy *    
Panel Study of Income Dynamics (PSID)External Web Site Policy 4
Panel
 
Physicians' Desk Reference - Red BookExternal Web Site Policy 3    
Premier Perspective DatabaseExternal Web Site Policy 5    
State Medicaid Prescription Reimbursement InformationExternal Web Site Policy 3      
Surveillance, Epidemiology and End-Results (SEER) - Medicare 5    
Survey of Income and Program Participation (SIPP)External Web Site Policy 4
Panel
 
The Second Longitudinal Study of Aging (LSOA II) - MedicareExternal Web Site Policy 5  
Truven Health MarketScan DatabasesExternal Web Site Policy 5    
United HealthcareExternal Web Site Policy 5    
Veterans Affairs (VA) Decision Support System and HERC average cost databasesExternal Web Site Policy 5  

* Data available only at the national level and not abstracted separately.

† Use of data requires collaboration with internal investigators.

[Return to Top]