Association of Public Data Users Webinar
Erin Holve, PhD, MPH, MPP
December 9, 2010

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Erin Holve, PhD, MPH, MPP
Director
AcademyHealth erin.holve@academyhealth.org

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The professional society of health services research and health policy analysis www.academyhealth.org

1.
Data Compendia
– HSRR
– HSRMethods.org
– Data.gov
– HHS.gov/Open
• HealthData.gov
2.
Data Resources for HSR
– Spectrum of Data Access
3.
Emerging Data Sources
4.
Data Governance
5.
AcademyHealth Online Learning

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Summits on the Future of HSR
– Assessing the Field’s Workforce Needs ( HSR ,
September 2009)
– Data and Methods ( HSR , October 2010)
PHSR: Data and Methods Needs Assessment
– Builds on PHSR Webliography
Methods Council
– Perspectives on Causality
– Methods Reviews Project
Online Learning

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HSRR
Data sets and instruments/indices and software in HSR
HSRMethods.org
Glossary of terms (and synonyms) related to study designs and analytic methods used by researchers in the variety of fields contributing to HSR
- Information on data sources
- Links to methods tutorials, etc.
Data.gov
U.S. Federal Executive Branch datasets
– HHS.gov/Open combines some of the most useful resources for HSR
– HealthData.gov is coming

www.nlm.nih.gov/nichsr

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Glossary
Data sources
Suggested Readings and Presentations
Links to methods tutorials, etc.

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Centers for Medicare & Medicaid
Services Cost Report Data (CMS)
Consumer Expenditure Survey (CEX)
Current Population Survey (CPS)
Employer Data
Health Plan Data (e.g. Kaiser
Permanente, Geisinger, Health Partners, etc.)
Health and Retirement Study (HRS)
HealthCare Cost and Utilization Project
(HCUP)
Medical Expenditure Panel Survey
(MEPS)
Medicare Current Beneficiary Survey
(MCBS)
Medicare Health Outcomes Survey
(HOS)
National Ambulatory Medical Care Survey
(NAMCS)
NACCHO National Profile of Local Health
Departments Study
National Health and Nutrition
Examination Survey (NHANES)
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National Health Interview Survey (NHIS)
National Hospital Discharge Survey
(NHDS)
National Survey of Substance Abuse
Treatment Services (SAMHSA)
National Survey on Drug Use and Health
(NSDUH)
National Vital Statistics System (NVSS)
National Hospital Ambulatory Medical
Care Survey (NHAMCS)
Part B National Summary Data File
(CMS)
Postmarket Drug Surveillance Programs
(FDA)
Supplemental Nutrition Assistance
Program Participation and Cost Data
(SNAP)
Treatment Episode Data Set (TEDS)
VA Databases (e.g. VINCI, VIRec)
Women, Infants, and Children (WIC)
Participation and Cost Data (USDA)

1. Data Use or
Visualization Tools with Descriptive Statistics
3. Public Use Files
4a. Virtual Access:
Research Identifiable
Files (RIF) w/DUA
6. Proprietary Data, or
Sensitive Classified Data
2. Data Use or
Visualization Tools with Analytic Capabilities
4b. Limited Data Set w/DUA
5. Access at Data
Use Center
Open - - - - - - - - - - - - - - - - - - - - - - Restricted

1. Data Use or
Visualization Tools with
Descriptive Statistics
2. Data Use or
Visualization Tools with
Analytic Capabilities
Examples
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Asthmopolis
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Bing Health Maps
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CHDI
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CMS Dashboard (Beta)
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Google Flu
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HCUPnet
MATCH (county health rankings)
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MEPSnet/HC
MEPSTnet/IC
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NIH RePORTER
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State Health Facts
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TEDS
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VitalStats
WISQARS
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WONDER
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Analyzethe.us
DATA2010
Data Ferret
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Google Fusion
Tables (Health
Map)
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SAMHDA

3.
Public Use Files
Examples
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CMS Cost Report
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CPS
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CEX
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HCUP
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HRS
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IHIS
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MEPS
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NACCHO
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NAMCS
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NHAMCS
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NHANES
NHDS
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NHIS
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NSDUH
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SNAP
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WIC

4a. Virtual Access:
Research Identifiable
Files (RIF) w/DUA
4b. Limited Data Set
5.
w/DUA
Access at Data Use
Center
Examples
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Medicare Claims (RIF)
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HRS
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NCHS virtual data center (NAMCS,
NHAMCS, NHDS, NNDS,
NNHS, NHHAS, NHIS,
NSFG, etc.)*
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MCBS
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NIMH
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Medical Claims
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HOS
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HRS
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MEPS
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NHANES
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NVSS
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VIRec
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NCHS Research Data
Center (RDC)**
* Must use SAS or SUDAAN. No access to microdata – researchers send SAS or SUDAAN code via e-mail and receive their output via e-mail, without direct access to the data. $750 set up fee; $750 monthly fee.
** 750 setup fee; $300/day (2-day minimum)

6.
Proprietary Data, or
Sensitive Classified
Data
Examples
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Employer Data
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Health Plan HER
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Sensitive or Classified Government Data
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Virtual Environment for System Researchers
(e.g. VINCI - for 2010, 2011)

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Federally Funded and Open Data
– Community Health Data Initiative
• HHS Health Indicators Warehouse
– Claims Data
• CMS Dashboard Beta
• CMS PUF for CER
• Multi-Payer Claims Database (MPCD)
– Prospective Outcome Systems using
Patient-specific Electronic data to Compare
Tests and therapies (PROSPECT) Grants

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Crowd-Sourced Data
– Asthmapolis
– Google Flu
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Collaborative/Cloud Research
Environments
– VA Informatics and Computing
Infrastructure (VINCI)
– NORC Collaboratory

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Confidentiality, Privacy, and Security (&
HIPAA)
– Both privacy and confidentiality should be preserved in all potential uses of PHI for research
Three important concerns for researchers to consider:
– Are IRBs and Privacy Boards knowledgeable and prepared for HSR?
– Are patients knowledgeable/informed about the uses of their personal health information?
– Do researchers communicate ways in which the research is beneficial to patients/consumes who contribute their PHI?

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IOM Report (2009): Beyond the HIPAA
Privacy Rule
– AcademyHealth: IRBs and Privacy Boards do not understand distinctions between clinical health research and informationbased research
• Increased Time and Cost of Studies
• Impediments to multi-site research
• Some studies not pursued due to challenges of approval

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Data Mashups
– Potential for re-identification
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Full-Text Analysis
– Scraping
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Genetic Information

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Seminars on
– Methods (including data!)
– Professional Skill-Building
– Policy Topics www.academyhealth.org/edcatalog
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Helpful resources on current research, updates on the field, fellowships, etc.
http://www.academyhealth.org/training/