Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: A Workshop
December 8, 2014
The Keck Center of the National Academies, Room 100
500 Fifth Street, NW
Washington, DC 20001
Meeting Objectives
- To explore how key pieces of genetic/genomic information can be effectively and efficiently delivered to patients and clinicians for improving care.
- To discuss how both the health care system and genomic data can be used for evidence generation in research and in patient care.
- To assess current best practices for using knowledge-generating/learning health care systems and which models may provide an opportunity for genomics to be used in the rapid learning process.
Agenda
| 8:30–8:35 a.m. |
Welcoming Remarks |
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Sharon F. Terry, Roundtable Co-Chair President and Chief Executive Officer Genetic Alliance |
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Geoffrey Ginsburg, Roundtable Co-Chair |
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Director, Center for Applied Genomics & Precision Medicine; Professor of Medicine and of Pathology and Biomedical Engineering |
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Duke University |
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| 8:35–8:45 a.m. |
Charge to Workshop Speakers and Participants |
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Sam Shekar, Workshop Co-Chair |
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Chief Medical Officer |
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Northrop Grumman Health IT |
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Geoffrey Ginsburg, Workshop Co-Chair |
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Director, Center for Applied Genomics & Precision Medicine; Professor of Medicine and of Pathology and Biomedical Engineering |
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Duke University |
Session I: Introduction—Opportunities for a Learning Health Care System
| Objectives: | To understand the advantages of implementing a learning system, the potential economic incentives, and how genomic information may fit into this model. |
| 8:45–9:05 a.m. | Lynn Etheredge |
| Director | |
| Rapid Learning Project |
Session II: Advancing Patient Care and Research with Genomic Information
| Objectives: | To explore multiple sources of genomic data within the health care system and how it can be captured, accessed, and used as evidence for advancing patient care and research. |
| Moderator: | Debra Leonard, University of Vermont College of Medicine |
| 9:05–9:35 a.m. | Introduction: Ensuring Quality of Genomic Data |
|
Neil Risch |
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Professor, Division of Biostatistics; Director, Institute for Human Genetics |
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University of California, San Francisco; |
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Adjunct Investigator |
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Kaiser Permanente Division of Research |
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Josh Peterson |
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Assistant Professor of Biomedical Informatics, Assistant Professor of Medicine; Director of Health Information, Technology Evaluation |
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Vanderbilt University Medical Center |
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| 9:35–10:05 a.m. | Advancing Research |
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Chris Chute |
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Section Head of Medical Informatics, Professor of Medical Informatics |
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Mayo Clinic |
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Tom Fowler |
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Director of Public Health |
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Genomics England |
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| 10:05–10:20 a.m. | Break |
| 10:20–10:50 a.m. | Advancing Patient Care |
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Gail Jarvik |
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Head and Professor, Division of Medical Genetics |
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University of Washington School of Medicine |
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Stephen Leffler |
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Chief Medical Officer |
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University of Vermont Medical Center |
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| 10:50–11:45 a.m. | Discussion with Speakers and Attendees |
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Chris Chute |
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Tom Fowler |
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Gail Jarvik |
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Stephen Leffler |
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Josh Peterson |
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Neil Risch |
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| 11:45 a.m.–12:35 p.m. | Working Lunch |
Session III: Translation of Genomics for Patient Care and Research
| Objectives: | To examine how to build a knowledge-generating health care system for genomics and incentivize its use. |
| Moderator: | Andrew Kasarskis, Icahn School of Medicine at Mount Sinai |
| 12:35–1:35 p.m. | Knowledgeable Health Care System for Genomics |
| Introduction/Overview | |
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Chuck Friedman |
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Josiah Macy Jr. Professor of Medical Education |
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Chair, Department of Learning Health Sciences, Medical School |
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Professor of Information and Public Health |
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University of Michigan |
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| Health System Data Research Perspective | |
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Colin Hill |
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Chief Executive Officer, President, Chairman, and Co-Founder |
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GNS Healthcare |
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| Health System Perspective | |
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Alexander Ommaya |
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Senior Director, Clinical Effectiveness and Implementation Research |
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Association of American Medical Colleges |
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Fred Sanfilippo |
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Director, Healthcare Innovation Program |
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Emory University–Georgia Tech |
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| 1:35–2:35 p.m. | Clinical End User |
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Jason Vassy |
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Section of General Internal Medicine, VA Boston Healthcare System Division of General Medicine |
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Brigham and Women’s Hospital; |
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Instructor |
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Harvard Medical School |
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| Patient Perspective | |
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Dixie Baker |
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Senior Partner |
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Martin, Blanck & Associates |
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| Commercial Developer Perspective | |
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Scott Moss |
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Research Informatics Software Developer |
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Epic |
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| Beyond the EHR | |
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Ketan Paranjape |
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Director, Personalized Medicine |
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Intel |
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| 2:35–2:50 p.m. | Break |
| 2:50–3:50 p.m. | Discussion with Speakers and Attendees |
|
Dixie Baker |
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Chuck Friedman |
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Scott Moss |
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Alexander Ommaya |
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Ketan Paranjape |
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Fred Sanfilippo |
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Jason Vassy |
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Additional Discussant: |
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Sandy Aronson |
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Director of Information Technology |
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Partners Healthcare Personalized Medicine |
Session IV: Integrating Genomic Information into the EHR
| Objectives: | To examine ongoing efforts to develop a framework and guidance for how genomic information may effectively be integrated and used within the health care system workflow. |
| Moderator: |
Sam Shekar, Northrop Grumman Health IT |
| 3:50–4:10 p.m. | Call to Action |
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Sandy Aronson |
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Director of Information Technology |
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Partners Healthcare Personalized Medicine |
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John David Nolen |
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Managing Director, Laboratory Business Unit |
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Cerner Corporation |
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| 4:10–4:35 p.m. | Discussion with Speakers and Attendees |
Session V: Considerations for the Future
| What are the next steps for achieving effective integration of genomic data into the health care system for the short term and long term? What are the challenges associated with this incorporation, and how can they be overcome to ensure that the information is fully utilized for improving patient care and research? Are there economic or other incentives for health care systems to invest in the knowledge-generating model? | |
| Moderator: | Geoffrey Ginsburg, Duke University |
| 4:35–5:30 p.m. | Discussants |
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Lynn Etheredge |
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Tom Fowler |
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Chuck Friedman |
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Colin Hill |
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Stephen Leffler |
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John David Nolen |
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Sharon F. Terry |
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| 5:30–5:35 p.m. | Summary and Concluding Remarks |
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Sam Shekar, Workshop Co-Chair |
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Chief Medical Officer |
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Northrop Grumman Health IT |
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Geoffrey Ginsburg, Workshop Co-Chair |
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Director, Center for Applied Genomics & Precision Medicine; Professor of Medicine and of Pathology and Biomedical Engineering |
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Duke University |
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| 5:35 p.m. | Adjourn |
