2012 Annual Health Policy Invitational Meeting

This event is by invitation only.

Health Data Use, Stewardship and Governance: Ongoing Gaps and Challenges

The goal of AMIA’s 2012 Health Policy Meeting is to further a national understanding of data use, re-use, stewardship and governance that meets challenges posed by technology-enabled sources of health data, and reflects current health informatics evidence and practices. In light of recent studies discussing the reliability of electronic health record (EHR) data as the basis for mandated reports and research, the meeting will develop and advance a data management model that recognizes healthcare data as an organizational, enterprise-wide asset and resource. The meeting will build on the prior work of AMIA, the Institute of Medicine (IOM) and others, especially in light of rapid changes being brought about by patient-centered medicine, performance and outcome measurement, and the growing adoption and use of EHRs.

This invitational multi-disciplinary meeting will engage public and private sector participants in focused and thought provoking discussions. Continuing the momentum gained from our prior meetings, we will explore another timely topic and weigh the various factors that impact the formulation of national policy, research and the role of biomedical and health informatics.  AMIA will then prepare a report of the outcome of the meeting.

Meeting Materials

• Briefing Book
• Meeting Agenda
• NVCHS December 2012 Letter: A Stewardship Framework for the Use of Community Health Data
• Opening Session Slides
• Plenary Session: Current Activities and Insights
  • Update from the Secondary Data Use SHARP Grant - Chris Chute
  • EU Data Stewardship Framework - Charlie Safran
  • Overview of Relevant AHRQ Activities - Gurvaneet Randhawa
• Plenary Session: Proposal and a Reactor Panel: Dramatic Reform of National Policy to Support Secure Access to Person-level Data for Quality Life-giving Research
  • Don Detmer
  • Soumitra Sengupta
• Plenary Session: Considerations for Data Stewardship and Governance
  • Jane Thorpe
  • Peter Embi
• Proposed Data Use Principles
• Preliminary Bibliography

Preliminary Background Reading and Resources

• AHRQ Comparative Effectiveness
• AHRQ Electronic Data Methods (EDM) Forum
• AHRQ Evidence Generation Awards
• Bloomrosen M, Detmer D.  Advancing the framework: use of health data—a report of a  working conference of the American Medical Informatics Association. J Am Med Inform Assoc. 2008 Nov-Dec;15(6):715-22.  
• CDC Report on Public Health Surveillance and HIT
• CMS Innovation Center
• DHHS Health Data Initiative (HDI)
• FDA Mini-Sentinel
• FDA Sentinel Initiative
• Gliklich RE, Dreyer NA, eds. Registries for Evaluating Patient Outcomes: A User’s Guide. (Prepared by Outcome DEcIDE Center [Outcome Sciences, Inc. dba Outcome] under Contract No. HHSA29020050035I TO1.) AHRQ Publication No. 07-EHC001-1. Rockville, MD: Agency for Healthcare Research and Quality. April 2007.
• Gray, Nicole Weiskopf, Chunhua Weng. Methods and dimensions of electronic health record data quality assessment: enabling reuse for clinical research. J Am Med Inform Assoc doi:10.1136/amiajnl-2011-000681  
• IOM Report: Digital Data Improvement Priorities for Continuous Learning in Health and Health Care
• IOM Report: Patients Charting the Course: Citizen Engagement in the Learning Health System - Workshop Summary
• MacKenzie, Sandra L Matt C Wyatt, Robert Schuff, Jessica D Tenenbaum, Nick Anderson. FOCUS on clinical research informatics: Practices and perspectives on building integrated data repositories: results from a 2010 CTSA survey  J Am Med Inform Assoc 2012;19:e1 e119-e124 Published Online First: 21 March 2012
• National health data stewardship (Request for Information).  Federal Register 72:106 (June 4, 2007) p. 30803-30805.
• Institute of Medicine. National Cancer Policy Forum. Informatics needs and challenges in cancer research: a workshop. (planned for Feb. 27-28, 2012)
• Institute of Medicine. Roundtable on Translating Genomic-Based Research for Health. New paradigms in drug discovery: how genomic data are being used to revolutionize the drug discovery and development process: a workshop.
• National Committee on Vital and Health Statistics. Health data stewardship: what, why, who and how. An NCVHS Primer. September 2009. Accessed 02/17/12 
• NIH Observational Medical Outcomes Project (OMOP)  
• Office of the national Coordinator for Health Information Technology (ONC). Individual’s Access to Their Own Health Information. A Policy brief.
• Patient-Centered Outcomes Research Institute (PCORI)
• Rea S, Pathak J, Savova G, Oniki TA, Westberg L, Beebe CE, Tao C, Parker CG, Haug PJ, Huff SM, Chute CG. Building a robust, scalable and standards-driven infrastructure for secondary use of EHR data: The SHARPn project.J Biomed Inform. 2012 Feb 4. [Epub ahead of print]
• Richesson, Rachel L., Krischer,Jeffrey Data Standards in Clinical Research: Gaps, Overlaps, Challenges and Future Directions. Journal of the American Medical Informatics Association Volume 14 Number 6 Nov / Dec 2007. 
• Rosenbaum S. Data governance and stewardship: designing data stewardship entities and advancing data access. Health Serv Res. 2010 Oct;45(5 Pt 2):1442-55.  
• Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC, Detmer DE, Expert Panel. Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper. J Am Med Inform Assoc. 2007 Jan-Feb;14(1):1-9.
• S. Silow-Carroll, J. N. Edwards, and D. Rodin, Using Electronic Health Records to Improve Quality and Efficiency: The Experiences of Leading Hospitals, The Commonwealth Fund, July 2012. 
• Vaccine Safety Datalink (VSD) Project
• Weng, Chunhua; Appelbaum, Paul; Hripcsak, George; Kronish, Ian; Busacca, Linda, Davidson, Karina W; Bigge,r J Thomas. Using EHRs to integrate research with patient care: promises and challenges JAMIA 2012;19:684-687
• World Economic Forum Global Data Charter
• WHO National eHealth Strategy Toolkit 
• Yaorong Ge, David K Ahn, Bhagyashree Unde, H Donald Gage, J Jeffrey Carr. Patient-controlled sharing of medical imaging data across unaffiliated healthcare organizations J Am Med Inform Assoc amiajnl-2012-001146 Published Online First: 11 August 2012

Sponsors

Meeting Sponsors and Supporters