the changing landscape of data for health services research and policy association of public data...
TRANSCRIPT
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
AcademyHealth
The professional society of health services research and health policy analysis
www.academyhealth.org
Presentation Outline
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 Sources4. Data Governance5. AcademyHealth Online Learning
AcademyHealth Data & Methods Projects
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
1. Data Compendia 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.govU.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
- Glossary- Data sources- Suggested Readings and Presentations- Links to methods tutorials, etc.
Data.gov
2. Data Resources for HSR 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)
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 orVisualization Tools
with Descriptive Statistics
2. Data Use orVisualization Tools
with Analytic Capabilities
6. Proprietary Data, orSensitive Classified Data3. Public Use Files
5. Access at Data Use Center
4b. Limited Data Set w/DUA
4a. Virtual Access: Research Identifiable
Files (RIF) w/DUA
Open Restricted- - - - - - - - - - - - - - - - - - - - - - -
Publicly Available Data & Data Use Tools
Examples
1. Data Use or Visualization Tools with Descriptive Statistics
Asthmopolis Bing Health Maps CHDI CMS Dashboard (Beta) Google Flu HCUPnet MATCH (county health rankings)
MEPSnet/HC MEPSTnet/IC NIH RePORTER State Health Facts TEDS VitalStats WISQARS WONDER
2. Data Use or Visualization Tools with Analytic Capabilities
Analyzethe.us DATA2010 Data Ferret
Google Fusion Tables (Health Map) SAMHDA
Public Use Files
Examples
3. Public Use Files CMS Cost Report CPS CEX HCUP HRS IHIS MEPS NACCHO
NAMCS NHAMCS NHANES NHDS NHIS NSDUH SNAP WIC
Identifiable Data
Examples
4a. Virtual Access: Research Identifiable Files (RIF) w/DUA
Medicare Claims (RIF) HRS
NCHS virtual data center (NAMCS, NHAMCS, NHDS, NNDS, NNHS, NHHAS, NHIS, NSFG, etc.)*
4b. Limited Data Set w/DUA
Medical Claims HOS HRS
MCBS NIMH
5. Access at Data Use Center
MEPS NHANES NVSS VIRec
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)
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)
3. Emerging Data Resources
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)
Crowd-Sourced Data– Asthmapolis– Google Flu
Collaborative/Cloud Research Environments– VA Informatics and Computing
Infrastructure (VINCI)– NORC Collaboratory
4. Data Governance 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?
Limited understanding of Information-Based Research
IOM Report (2009): Beyond the HIPAA Privacy Rule– AcademyHealth: IRBs and Privacy Boards
do not understand distinctions between clinical health research and information-based research
• Increased Time and Cost of Studies• Impediments to multi-site research• Some studies not pursued due to challenges of
approval
Privacy 2.0
Data Mashups– Potential for re-identification
Full-Text Analysis– Scraping
Genetic Information
5. AcademyHealth Online Learning Seminars on
– Methods (including data!)– Professional Skill-Building– Policy Topicswww.academyhealth.org/edcatalog
Helpful resources on current research, updates on the field, fellowships, etc.http://www.academyhealth.org/training/