Widening the Use of Electronic Health Record Data for Research
October 30, 2009
Natcher Conference Center, National Institutes of Health
Cosponsored by the NCRR and the i2b2 National Center of Biomedical Computing (U54LM008748)
Electronic records have yet to be broadly implemented nationally but there are large national efforts underway to address this lag in technology adoption. Concurrently, leading adopters of health information technology are looking beyond their implementation investment towards the value that might be derived from the secondary applications of clinical data obtained during the course of healthcare. Among these are comparative effectiveness research, genomic studies (when paired with biological samples), pharmacovigilance, health disparities reseearch, orphan disease research, and public health.
- Illustrate the challenge, pitfalls and key informers of success in the secondary application of electronic healthcare data using examples from leading practitioners.
- Identify challenge areas of mutual interest.
- Identify roadblocks that can be addressed in the short term.
- Share successful roadmaps
- Selection of high priority common tasks that are achievable in the near term
- Identify teams willing to collaborate on these tasks
8:00 AM Welcome and Purpose of Meeting - View slides
8:15 AM BUILDING THE CASE FOR NEW OPPORTUNITIES FOR RESEARCH ON HEALTH DISPARITIES AND ORPHAN DISEASES
Gary Gibbons, MD
Professor of Medicine, Morehouse School of Medicine Atlanta, GA
How can we address issues of the underserved through use of existing clinical data, especially given the unique challenges inherent in systems that may be more community based and not yet fully automated or sparsely represented for the rarer diseases?
9:15 AM COMPARATIVE EFFECTIVENESS RESEARCH: A MODEL FOR COLLABORATION BY HOSPITALISTS ACROSS MULTIPLE SYSTEMS
Andrew Auerbach, MD, MPH
Assistant Professor of Medicine, UCSF
What are we really doing to our patients and how can we use data from our healthcare institutions individually and in aggregate to determine what interventions work, don't work and which are cost efficacious? View Slides
10: 45 AM FROM POPULATION GENOMICS TO PERSONALIZED MEDICINE: A STUDY TO EXTEND OUR UNDERSTANDING OF RHEUMATOID ARTHRITIS.
Robert Plenge, MD, PhD
Assistant Professor of Medicine, Brigham and Women's Hospital, Boston, MA
1:00 PM CASE STUDIES THAT MINE EXISTING DATA FOR PUBLIC HEALTH
John Brownstein, PhD
Assistant Professor of Pediatrics, Children's Hospital Boston, Boston, MA
What is going on locally, nationally and around the world "under our noses" and how can we use data from traditional clinical data sources and "new media" sources to get a more timely and comprehensive view of public health and conduct biosurveillance? View Slides
2:00 PM PANEL PERSPECTIVES
Moderator: George Hripcsak
Arlene Brown, MD, PhD (slides)
Associate Professor of Medicine, UCLA
Lisa Cannon-Albright, PhD
Professor of Biomedical Informatics, University of Utah
Justin Starren, MD, PhD
Director, Biomedicl Informatics Research Center, Marshfield Clinic
Mark Weiner, MD
Associate Professor of Medicine, Hospital of University of Pennsylvania
2:45 PM PANEL AND AUDIENCE DISCUSSION
GUIDING QUESTIONS FOR PANEL DISCUSSION
What concrete clinical research questions could be addressed collaboratively with electronic health record data? Which are most ready for tackling and why?
Infrastructure – What infrastructure including systems and tools are needed to address these clinical research questions collaboratively? What current local and national resources/infrastructure can be leveraged, particularly from health information technology and research system technology? What technical gaps and challenges exist to address research questions with EHR data?
Privacy/Policy – What policy challenges could be a barrier? What solutions have worked in other areas? Who are the appropriate constituencies to address the policy issues? What approaches have or should be used to bring constituencies to agreement on a way forward?
What privacy/confidentiality issues exist? What regulatory issues must be addressed? How can public trust be captured? Who are the constituencies? What is best forum for engaging?
Impact – What is expected impact on advancing health? What are priorities based on broad impact, importance, and feasibility?
3:30 PM SUMMARY AND WRAP UP