Guidance on the Use of Public Use Data Sets

Background

The National Human Subjects Protection Advisory Committee (NHRPAC) approved advice on this issue at its January 28-29, 2002 committee meeting. Read the full recommendation, including the following definition and advice:

Definition: Public use data files are data files prepared by investigators or data suppliers with the intent of making them available for public use. The data available to the public are not individually identified or maintained in a readily identifiable form.

Inventory of Public Use Data Files: Institutions are urged to post a list of approved publicly available data sets, including data files reviewed at that institution that qualify for public availability.

IRB Review IS required in the following cases:

• Investigators who seek to merge or enhance data sets in such a way that individuals might be identified must submit an IRB application.
• Use of restricted datasets requires application to the IRB for review and approval.
• If submitting a proposal to obtain the use of a dataset is required, an application to the IRB for review and approval is also required.
• If the investigator seeks to obtain additional information from the database owner, then an application to the IRB for review and approval is also required.
• If a data use agreement is involved, then an application to the IRB for review and approval is also required.

The list of public use data sets that follows has been reviewed by the University of Tennessee, Knoxville, IRB with the intent of making these data files available for use with no further review by the UTK IRB necessary, as long as the following criteria are met:

• Research will not involve any merging of any of the data sets in such a way that individuals might be identified, and
• The researcher will not enhance the public data sets with identifiable, or potentially identifiable data.

Investigators who wish to have additional data sets added to the inventory may submit to the IRB for review a Public Data Set Nomination Form. If the IRB finds upon review that the additional data set meets the established criteria, it will be added to the inventory.

UT, Knoxville Inventory of Public Use Data Sets Users of public use data sets do not need to submit an IRB application to use such files or seek a determination that the use of the public data files meets the criteria for being exempt from IRB review.
Site of Data	Data Set(s)
Agency for Healthcare Research and Quality	Healthcare Cost and Utilization Project (H-CUP) healthcare databases Medical Expenditure Panel Survey
American College of Surgeons (ACS)	National Trauma Data Bank (NTDB) American College of Surgeons National Surgical Quality Improvement Program(ACS-NSQIP) Participant Use Data File
American National Election Studies, Stanford University and University of Michigan	http://www.electionstudies.org/
Bureau of Labor Statistics	Public Use data sets only, IRB approval required for restricted and geo-coded/zip code data sets National Longitudinal Survey of Youth 1997 (NLSY97) National Longitudinal Survey of Youth 1979 (NLSY79) NLSY79 Children and Young Adults National Longitudinal Survey of Young Women and Mature Women (NLSW) National Longitudinal Survey of Young Men and Older Men American Time Use Survey (ATUS)
University of California, Los Angeles (UCLA)	California Health Interview Survey (public use data files only)
University of California, Los Angeles (UCLA) Institute for Social Science Research (ISSR)	Social Science Data Archives
California Office of Statewide Health Planning and Development	Home Health Agency and Hospice Facility Annual Utilization Data
Centers for Disease Control and Prevention including the National Center for Health Statistics	Public data sets including but not limited to the following: Behavioral Risk Factor Surveillance System (federal level only) Longitudinal Studies of Aging National Ambulatory Medical Care Survey (NAMCS) National Center for Health Statistics Hispanic Health and Nutrition Examination Survey (HHANES) National Health and Nutrition Examination Survey (public data only) National Health Interview Survey National Hospital Ambulatory Medical Care Survey (NHAMCS) National Hospital Care Survey National Immunization Survey National Mortality Followback Survey (NMFA) 1993 National Nursing Home Survey National Survey of Children with Special Health Care Needs (public version) National Survey of Children’s Health (public version) National Survey of Family Growth National Vital Statistics System Pregnancy Risk Assessment Monitoring System State and Local Area Integrated Telephone Survey (SLAITS) Youth Risk Behavioral Survey Study (YRBSS) (federal level only)
China Census Datasets log in via UT Libraries	A collection of zipped census datasets
China Data Online, University of Michigan log in via UT Libraries	A collection of statistics about China
The Commonwealth Fund	Survey of Older Americans 2004
Cornell University	Cornell Institute for Social and Economic Research (CISER)
Cross-National Data Center in Luxembourg	Luxembourg Income Study (LIS)
Data-Planet Statistical Datasets log in via UT Libraries
Duke University and National Institute on aging	National Long-Term Care Survey
Economic Research Service (ERS), US Department of Agriculture (USDA)	Agricultural Resource Management Survey (ARMS)
University of Essex Institute for Social and Economic Research	British Household Panel Survey
European University Institute	German Socio-Economic Panel Survey (G-SOEP)
Federal Reserve System	Survey of Consumer Finances (SCF)
HIV Prevention Trials Network	Vaccine Preparedness Study/Uninfected Protocol Cohort
International City/County Management Association log in via UT Libraries	ICMA Datasets
International Country Risk Guide log in via UT Libraries	ICRG Table 3B Political Stability Data
International Terrorism log in via UT Libraries	Attributes of Terrorist Events (ITERATE) 1968-2010
ICPSR (Inter-University Consortium for Political and Social Science Research) University of Michigan log in via UT Libraries	Public data sets including, but not limited to the following: Collaborative Psychiatric Epidemiology Surveys Established Populations for Epidemiological Studies of the Elderly (EPESE) General Social Survey (GSS) Hispanic Established Populations for the Epidemiological Study of the Elderly (HEPESE) National Survey of America’s Families National Survey on Drug Use and Health National Youth Survey Panel Study of Income Dynamics (PSID)
University of Michigan Institute for Social Research	Health and Retirement Study Survey of Consumers (SCA)
University of Michigan National Archive of Computerized Data on Aging	Advanced Cognitive Training for Independent Vital Elderly, 1999-2001 (ACTIVE), public data only. Apply through IRB to use restricted sets.
Minnesota Population Center, University of Minnesota	Integrated Public Use Microdata Series, International https://international.ipums.org/international/
University of Minnesota	FINBIN places detailed reports on whole farm, crop, and livestock financials at your fingertips.
Murray Research Archive, Harvard University http://www.murray.harvard.edu/
National Agricultural Statistics Service (NASS), U.S. Department of Agriculture	Census of Agriculture and other data collected and distributed by NASS http://www.nass.usda.gov/
National Alliance for Caregiving	Caregiving in the US-Years 2009, 2010, & 2015
National Cancer Institute (NIH)	Health Information National Trends Survey (HINTS) http://hints.cancer.gov/
National Collegiate Athletic Association (NCAA)	NCAA Injury Surveillance Program (ISP) http://www.ncaa.org/health-and-safety/medical-conditions/sports-injuries
National Highway Traffic Safety Administration	Fatality Analysis Reporting System (FARS) http://www.nhtsa.gov/FARS National Automotive Safety System http://www.nhtsa.gov/NASS
ORNL and U. S. Department of Energy Land Scan Datasets log in via UT Libraries	The LandScan Global Archive includes all of the historical datasets of the LandScan Global Population Database back to the year 2000.
Perceptual Robotics Lab (PeRL) at the University of Michigan	Ford Campus Vision and Lidar Data Set
RavenPack	RavenPack News Analytics 4.0 www.ravenpack.com/products
Research Data Assistance Center, University of Minnesota	Medicare Healthcare Cost Report Information System (HCRIS) http://www.resdac.org/cms-data/files/hcris
Roper Center for Public Opinion Research log in via UT Libraries
St. Jude Children’s Research Hospital	Childhood Cancer Survivor Study https://ccss.stjude.org/
Social Explorer log in via UT Libraries
Social Science Electronic Data Library (SSEDL) log in via UT Libraries	Library of data files from eight topically-based health and social science collections
UK Data Service, University of Essex and University of Manchester	National Child Development Study http://discover.ukdataservice.ac.uk/series/?sn=2000032
US Agency for International Development	Demographic and Health Surveys (DHS) http://www.dhsprogram.com/
US Department of Agriculture	Continuing Survey of Food Intakes by Individuals (CSFII) http://www.ars.usda.gov/Main/docs.htm?docid=14392
US Department of Commerce	US Census Bureau U. S. Foreign Trade Data log in via UT Libraries
US Department of Education	National Center for Education Statistics http://nces.ed.gov/
US Department of Health and Human Services	Hospital CompareNational Epidemiologic Survey on Alcohol and Related Conditions (NESARC)Organ Procurement and Transplantation Network
US Department of Justice	National Crime Victimization Survey School Crime Supplements
United Nations Statistics Division	UNdata
Washington State Department of Health	Comprehensive Hospital Abstract Reporting System (CHARS; public data only)
University of Wisconsin Data and Information Services Center	Better Access to Data for Global Interdisciplinary Research BADGIR
University of Wisconsin Institute on Aging	Midlife in the United States (MIDUS)
World Bank	World Development Indicators, Global Development Finance, and additional statistical data files from the World Bank
World Health Organization	Global School-Based Student Health Survey (GSHS) www.who.int/chp/gshs/en