The Rocky Mountain Research Data Center Advancing the Frontiers of Social Science: Opportunities and Challenges Jani Little, Executive Director Katie Genadek, Expected Administrator The Rocky Mountain Research Data Center A Local and Invaluable Data Resource Jani Little, Executive Director Phil Pendergast, Administrator https://www.colorado.edu/rocky-mountain-research-data-center/ The Rocky Mountain Federal Statistical Research Data Center (RMRDC) Jani Little Executive Director

9 in 2009 and 24 in 2016

What is a Federal Statistical Research Data Center (FSRDC)? --A secure computing lab where restricted data, collected by federal statistical agencies, can be accessed FOR STATISTICAL PURPOSES ONLY --FSRDCs are managed by an on-site Census employee—the administrator— who guides researchers on proposal development, enforces security guidelines, and serves as liaison with the research community.

RMRDC Consortium Members

Advantages to Researchers from Member Institutions: --Free access to RMRDC services and secure laboratory --NCHS Data Fees Paid --Free access to other FSRDCs

Requirements for Any FSRDC Project: --Research projects must undergo a formal approval process with the agency that owns the data, e.g., Census, NCHS, AHRQ --Researchers must go through a background investigation that qualifies them for “Special Sworn Status (SSS)” which makes them an unpaid Census Bureau employee. --Results must be formally reviewed for disclosure violation before they leave the secure facility. Currently 260 active projects, 50% are Census

What Are Restricted Data? Information about individuals, households, businesses that is not available publicly because it is sensitive or could be used to disclose their identities What makes disclosure risky? Geographic identifiers Rare attributes Many individual attributes--Longitudinal studies Linked Data, e.g., Medical Records with Personal Data or Physician attributes What are examples of sensitive data? Any data describing a child, aged 18 and under Health Conditions, Lab Results

What Kinds of Restricted Data are Available in the FSRDCs? --Microdata about all US businesses--precise geolocations --Microdata about large samples of US business—geolocations, payroll, tax records, foreign investments --Microdata about individuals and households, precise geolocations --Variables not available in public versions of data sets --All microdata records for Decennial Censuses, ACS, CPS --Full range of response items (e.g., industry codes, occupational codes, detailed race answers, income is not top-coded, etc.) --Health Records for individuals linked with CMS enrollment/claims Death Certificates/Registry Social Security Benefits

Your Answers to the Data Questions: Census Data and the American Community Survey (ACS) National Health and Nutrition Examination Survey (NHANES) Medical Expenditure Panel Survey (MEPS), Household Component Birth and Death Registry Electronic Medical Records, especially if linked to Physician information National Ambulatory Medical Care Survey (NAMCS), Physicians Sample Medical Expenditure Panel Survey (MEPS), Medical Provider Survey All Payer Claims Data (APCD) CMS Claims (UMinn ResDac https://www.resdac.org/) National Survey on Drug Use and Health (NSDUH) SAMSA https://pdas.samhsa.gov/#/ NSDUH gives link to accessing restricted data through portal is also available in FSRDCs NAMCS annual study of ambulatory care provided at physicians’ offices. They provide information on 30 patient visits on 1-week reporting period. Working with CMS Electronic Records Incentive Programs. AHRQ trying to develop a comprehensive approach to using APCD

Your Answers to the Data Questions (cont): CDC Surveillance Systems: Behavioral Risk Factor Surveillance Survey (BRFSS) National Adult Tobacco Survey (NATS) American Indian Adult Tobacco Survey https://www.cdc.gov/tobacco/data_statistics/surveys/american_indian/index.htm National Program of Cancer Registries (NPCR) Youth Risk Behavior Surveillance System (YRBSS) United States Renal Data System (USRDS) records have been linked to some NCHS studies https://www.cdc.gov/nchs/data-linkage/esrd.htm

Restricted Business, Demographic Data and Health Data from the Census Bureau https://www.census.gov/ces/dataproducts/economicdata.html https://www.census.gov/ces/dataproducts/demographicdata.html

Longitudinal Business Database (LBD) https://www. census Census of all business establishments with paid employees, updated annually Precise geographic locations (long, lat) Could be used to document clinics, Dr offices, and other health services establishments, especially in rural areas. All ACS records available in RDCs.. Most of us have used aggregate tables, county, tract level. For PUMS data can’t get county identifier if it is too small (under 250,000).

American Community Survey (ACS) The best source of current sociodemographic data available Large yearly samples (1.5% of US pop.) enable customized small-area estimation Household sample enables measurement of family structure and characteristics of each member Including child information Very detailed race and ethnicity codes, including tribal designation For those using EMR, these data could be used to ask “How representative of their communities are your patients?” All ACS records available in RDCs.. Most of us have used aggregate tables, county, tract level. For PUMS data can’t get county identifier if it is too small (under 250,000).

ACS Health Questions for each person 15+ Is this person currently covered by any of the following types of health insurance or coverage plans? Insurance through an employer Insurance purchased directly Medicare Medicaid TRICARE or military health care VA Indian Health Service Other Is this person deaf or does he/she have serious difficulty hearing? Is this person blind or have difficulty seeing when wearing glasses? Because of a physical, mental, or emotional condition, does this person have serious difficulty concentrating, remembering, or making decisions? Does this person have serious difficulty walking or climbing stairs? Does this person have difficulty dressing or bathing? Because of a physical, mental, or emotional condition, does this person have difficulty doing errands alone?

Linking ACS Records to Master Address File (MAF) MAF provides physical location of every residence in US MAF provides the sampling frame for Decennial Census and annual ACS ACS individual and HH information can be precisely geolocated Examples of Applications: To derive indexes of Health Insurance Coverage for Rural Areas To derive indexes of Distance or Travel Time to Nearest Health Services

What is the Point of Customized area estimates? Tailor geographies to spaces that you are interested in: What are the characteristics of households within 2000 feet of your care providers? Within a mile? What types of people live in close proximity to oil and gas production sites? Are patients who experience similar medical problems living in similar types of neighborhoods? No need to rely on broad aggregate-level demographic characteristics: What share of the local population is age 65+, black, black and female? Instead… Are most people from this community recent migrants? What are their principle occupations, HH structures, and ethnicities of migrants? Do they have health insurance?

Current Populations Survey (CPS) Most comprehensive microdata data available on national employment Also covers health insurance coverage, unemployed and discouraged workers Detailed family member work, demographic and (select) behavioral characteristics captured by supplements School enrollment, tobacco use and cessation, internet use Food security supplement measuring food expenditures, access to food, and food quality and safety CPS microdata could supplement ACS microdata on health insurance coverage

Survey of Income and Program Participation (SIPP) Provides comprehensive information about the income and participation of individuals and households involved in government assistance programs. Continuous series of national panels, with sample size ranging from approximately 14,000 to 52,000 interviewed households. The duration of each panel ranges from 2 ½ years to 4 years. Health Care Utilization and Medical Expenditures Health Insurance

Restricted Data from the National Center for Health Statistics (NCHS) https://www.cdc.gov/rdc/b1datatype/dt122.htm

National Health and Nutrition Examination Survey (NHANES) https://www Annual Nationally Representative Sample, Adults and Children (N=10,000 persons) Interviews, Physical Exams, Lab Testing Oversampled Hispanics, Blacks, Asians, Persons in Poverty, and Over age 80 Major Medical Conditions, including Cancer Youth Data STDs Alcohol and Drug Use Depression Blood Lead, Mercury, Arsenic Immunizations Occupation/Industry Codes and Demographics Linked to National Death Index (1999-2014) Linked to CMS Enrollment and Claims  

National Health Interview Survey (NHIS) https://www. cdc Annual State Representative Samples, Adults and Children (In 2016-- 36,000 households, 87,500 persons) Over samples Blacks and Hispanics Every 5 years, Cancer Control Supplement (CCS) Country of Birth and Related Immigration Variables Detailed Occupation/Industry Codes Detailed Race and Hispanic Origin Linked to National Death Index (1999-2014) Linked to CMS enrollment/claims Linked to Cancer Registry in Florida  

5 different interviews over 2 years Restricted Medical Expenditure Panel Survey (MEPS) https://meps.ahrq.gov/mepsweb/data_stats/onsite_datacenter.jsp Annual Household Sample Drawn from NHIS Sample (In 2016, 13,587 families, 33,259 persons) Cancer Survivorship Supplement draws from NHIS sample with cancer diagnosis 5 different interviews over 2 years Extensive information about medical care and expenses Conditions Demographics Linked to Medical Provider Surveys Linked to NHIS data  

Restricted National Vital Statistics System (NVSS) https://www. cdc State and County geographic identifiers Birth, death, fetal death, linked birth/infant death microdata Exact dates of vital events Demographic information, age, sex, race Detailed Causes of death

NCHS Surveys Linked to CMS Data National Health Interview Survey (NHIS) National Health and Nutrition Examination Survey (NHANES) NHANES I Epidemiologic Follow-up Study (NHEFS) The Second Longitudinal Study of Aging (LSOA II) National Nursing Home Survey (NNHS) National Home and Hospice Care Survey (NHHCS)

Thank You!! jani.little@colorado.edu philip.m.pendergast@census.gov