The Changing Landscape of Data for Health Services Research and Policy

1. 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

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

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

4. Presentation Outline • Data Compendia • HSRR • HSRMethods.org • Data.gov • HHS.gov/Open • HealthData.gov • Data Resources for HSR • Spectrum of Data Access • Emerging Data Sources • Data Governance • AcademyHealth Online Learning

5. 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

6. 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.gov U.S. Federal Executive Branch datasets • HHS.gov/Open combines some of the most useful resources for HSR • HealthData.gov is coming

7. Health Services and Sciences Research Resources (HSRR) www.nlm.nih.gov/nichsr

8. www.hsrmethods.org • Glossary • Data sources • Suggested Readings and Presentations • Links to methods tutorials, etc.

9. Data.gov

10. 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) 2. Data Resources for HSR

11. 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 4b. Limited Data Set w/DUA 5. Access at Data Use Center 2. Data Use or Visualization Tools with Analytic Capabilities Spectrum of HSR Data Access - - - - - - - - - - - - - - - - - - - - - - -

12. Publicly Available Data & Data Use Tools

13. Public Use Files

14. Identifiable Data * 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)

15. Restricted Data

16. 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

17. Emerging Data Resources (cont’d) • Crowd-Sourced Data • Asthmapolis • Google Flu • Collaborative/Cloud Research Environments • VA Informatics and Computing Infrastructure (VINCI) • NORC Collaboratory

18. 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?

19. 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

20. Privacy 2.0 • Data Mashups • Potential for re-identification • Full-Text Analysis • Scraping • Genetic Information

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