Transcript Use of NLM Resources for Current Research

The Changing Landscape of
Data for Health Services
Research and Policy
Association of Public Data Users Webinar
Erin Holve, PhD, MPH, MPP
December 9, 2010
Introduction
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Erin Holve, PhD, MPH, MPP
Director
AcademyHealth
[email protected]
AcademyHealth
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The professional society of health
services research and health policy
analysis
www.academyhealth.org
Presentation Outline
1. Data Compendia
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HSRR
HSRMethods.org
Data.gov
HHS.gov/Open
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HealthData.gov
2. Data Resources for HSR
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Spectrum of Data Access
3. Emerging Data Sources
4. Data Governance
5. AcademyHealth Online Learning
AcademyHealth Data & Methods
Projects
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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)
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PHSR: Data and Methods Needs Assessment
– Builds on PHSR Webliography
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Methods Council
– Perspectives on Causality
– Methods Reviews Project
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Online Learning
1. Data Compendia
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HSRR
Data sets and instruments/indices and software in HSR
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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.
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Data.gov
U.S. Federal Executive Branch datasets
– HHS.gov/Open combines some of the most useful resources
for HSR
– HealthData.gov is coming
Health Services and Sciences
Research Resources (HSRR)
www.nlm.nih.gov/nichsr
www.hsrmethods.org
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Glossary
Data sources
Suggested Readings and Presentations
Links to methods tutorials, etc.
Data.gov
2. Data Resources for HSR
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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)
Spectrum of HSR Data Access
1. Data Use or
Visualization Tools
with Descriptive Statistics
3. Public Use Files
2. Data Use or
Visualization Tools
with Analytic Capabilities
4a. Virtual Access:
Research Identifiable
Files (RIF) w/DUA
4b. Limited Data Set
w/DUA
6. Proprietary Data, or
Sensitive Classified Data
5. Access at Data
Use Center
Open - - - - - - - - - - - - - - - - - - - - - - - Restricted
Publicly Available Data & Data
Use Tools
Examples
1. Data Use or
Visualization Tools with
Descriptive Statistics
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Asthmopolis
 Bing Health Maps
 CHDI
 CMS Dashboard (Beta)
 Google Flu
 HCUPnet
 MATCH (county health
rankings)
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MEPSnet/HC
 MEPSTnet/IC
 NIH RePORTER
 State Health Facts
 TEDS
 VitalStats
 WISQARS
 WONDER
2. Data Use or
Visualization Tools with
Analytic Capabilities
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Analyzethe.us
 DATA2010
 Data Ferret
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Google Fusion
Tables (Health
Map)
 SAMHDA
Public Use Files
Examples
3.
Public Use Files
CMS Cost Report
 CPS
 CEX
 HCUP
 HRS
 IHIS
 MEPS
 NACCHO
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NAMCS
 NHAMCS
 NHANES
 NHDS
 NHIS
 NSDUH
 SNAP
 WIC
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Identifiable Data
Examples
Medicare Claims (RIF)
 HRS
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Medical Claims
 HOS
 HRS
 MEPS
 NHANES
 NVSS
 VIRec
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Virtual Access:
Research Identifiable
Files (RIF) w/DUA
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4b.
Limited Data Set
w/DUA
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5.
Access at Data Use
Center
4a.
NCHS virtual data
center (NAMCS,
NHAMCS, NHDS, NNDS,
NNHS, NHHAS, NHIS,
NSFG, etc.)*
MCBS
 NIMH
NCHS Research Data
Center (RDC)**
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* 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)
Restricted Data
Examples
6.
Proprietary Data, or
Sensitive Classified
Data
Employer Data
 Health Plan HER
 Sensitive or Classified Government Data
 Virtual Environment for System Researchers
(e.g. VINCI - for 2010, 2011)
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3. Emerging Data Resources
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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
Emerging Data Resources
(cont’d)
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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
4. Data Governance
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Confidentiality, Privacy, and Security (&
HIPAA)
– Both privacy and confidentiality should be
preserved in all potential uses of PHI for research
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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?
Limited understanding of
Information-Based Research
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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
Privacy 2.0
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Data Mashups
– Potential for re-identification
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Full-Text Analysis
– Scraping
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Genetic Information
5. AcademyHealth Online Learning
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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/