Table 1.

Characteristics and Access for Selected Federal Data Sets Containing Protected Health Information

AGENCY NAME	DATA SET NAME AND WEBSITE	BRIEF DESCRIPTION OF DATA	TYPE OF FILEa	PROTECTED HEALTH INFORMATION	RESTRICTIONS ON DATA ACCESS
					PURPOSE OF DATA REQUEST	TYPE OF REQUESTOR	TYPE OF FUNDING SOURCE
Centers for Medicare and Medicaid Services (CMS)	Chronic Condition Data Warehouse (CCW) files http://www.resdac.org/cms-data/request/research-identifiable-files	Enrollment information and claims data for Medicare Part A, B, and D including service dates, diagnoses, procedures, charges, and payments, plus functional assessment data (MDS, OASIS), Part D plan characteristics and formulary data, prescriber and dispenser characteristics.	RIF	5-digit ZIP code, service dates, birth dates, ages >89, death dates	Only for research that advances CMS mission	No explicit restrictions	No explicit restrictions, but requestor must be deemed independent of commercial funding source
Centers for Medicare and Medicaid Services (CMS)	Medicaid Analytic eXtract (MAX) files http://www.resdac.org/cms-data/request/research-identifiable-files	Enrollment information and inpatient, longterm care, prescription, and other claims and encounter records for all Medicaid recipients. Includes service dates, diagnoses, procedures, charges, and payments.	RIF	5-digit ZIP code, service dates, birth dates, ages >89, death dates	Only for research that advances CMS mission	No explicit restrictions	No explicit restrictions but requestor must be deemed independent of commercial funding source
Centers for Medicare and Medicaid Services (CMS)	Medicare Standard Analytical Files (SAF) http://www.cms.gov/Research-Statistics-Data-and-Systems/Files-for-Order/LimitedDataSets/StandardAnalyticalFiles.html	Enrollment information and claims data for Medicare Part A and B including service dates, diagnoses, procedures, charges, and payments.	LDS	County, service dates, birth dates, ages >89, death dates	Only for research that advances CMS mission	No explicit restrictions	No explicit restrictions
Centers for Medicare and Medicaid Services (CMS)	Medicare Current Beneficiary Survey (MCBS) http://www.resdac.org/cms-data/request/medicare-current-beneficiary-survey	Panel survey of a nationally representative sample of the Medicare population. Survey data on socioeconomic and demographic characteristics, health status and functioning, health care use and expenditures, health insurance coverage, and access to care. MCBS files come linked to Part A, B, and D claims records including service dates, diagnoses, procedures, charges, and payments.	LDS	5-digit ZIP code, service dates, birth dates, ages >89, death dates	Only for research that advances CMS mission	No explicit restrictions	No explicit restrictions
National Institutes of Health (NIH) National Cancer Institute (NCI)	Surveillance, Epidemiology, and End Results (SEER)–Medicare Linked Database http://appliedresearch.cancer.gov/seermedicare/obtain/requests.html	Data from cancer registries linked with Medicare enrollment and claims files. Includes demographic characteristics, cancer site and stage, and cause of death information.	LDS	County, service dates, birth (year and month), death dates	Only for research purposes	No explicit restrictions	Commercial funders must provide letter indicating researcher has freedom to publish.
National Institutes of Health (NIH) National Institute on Aging (NIA)	Health and Retirement Study (HRS) linked with Medicare enrollment and claims http://hrsonline.isr.umich.edu/index.php?p=resdat	Biennial panel survey of Americans over the age of 50. Survey data include demographic and socioeconomic characteristics, labor force participation, retirement, health status, and functioning. Can be linked with restricted data including interview and birth date, Medicare enrollment, and Part A, B, And D claims files.	HRS-Restricted Data (NIA), Medicare enrollment and claims-RIF (CMS)	5-digit ZIP code, service dates, birth dates, ages > 89, death dates	Only for research and statistical purposes (NIA). Only for research that advances CMS’s mission (CMS)	Only if affiliated with an institution with a DHHS certified Human Subjects review process	The project must be funded by U.S. government grant or contract or foundation.
Centers for Disease Control and Prevention (CDC)	National Health and Nutrition Examination Survey (NHANES) linked with Medicare enrollment and claims http://www.cdc.gov/nchs/nhanes	NHANES data can be linked with Medicare enrollment and Part A, B, and D claims files.	NHANES-PUF (CDC), Medicare enrollment and claims-RIF (CMS)	5-digit ZIP code, service dates, birth dates, ages > 89, death dates	Research must have public health benefit.	No explicit restrictions	No explicit restrictions
U.S. Food and Drug Administration (FDA)	FDA Mini-Sentinel distributed data network	Mini-Sentinel is a pilot project sponsored by the FDA to create an active surveillance system— the Sentinel System— to monitor the safety of FDA-regulated medical products. Mini-Sentinel uses preexisting electronic health care data from multiple sources. Collaborating institutions provide access to data, as well as scientific and organizational expertise. Data include enrollment, demographic, prescription drug, and medical procedure information.	Not specified	5-digit ZIP code, service dates, birth dates, ages >89, death dates	Limited to Mini-Sentinel’s public health purposes (e.g., active surveillance, assessment of the impact of FDA actions). Expanded Sentinel Initiative will include broader research component.	N/A for Mini-Sentinel in the pilot phase. Only FDA and Mini-Sentinel Collaborators have access to data.	N/A for Mini-Sentinel in the pilot phase
Veterans Health Administration (VHA)	Veterans Health Information System and Technology Architecture (VistA)	VA-wide information system built around electronic medical record data relating to veterans’ health care, with nearly 160 integrated software modules for clinical care, financial functions, and infrastructure.	Not specified	5-digit ZIP code, service dates, birth dates, death dates	No explicit restrictions	Only VA employees. Non–VA employees can obtain a temporary VA appt. and access data at a VA facility	No explicit restrictions

Notes: (DHHS) Department of Health & Human Services; (FFS) fee-for-service; (LDS) limited data set; (MDS) Minimum Data Set; (OASIS) Outcome and Assessment Information Set; (PUF) public use file; (RIF) research identifiable file.

Data are based on information available as of November 2014.

^a“Type of file” is based on the terminology used by the data owner.