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Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
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A

Workshop Agenda

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.
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
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Agenda

8:30–8:35 a.m.

Welcoming Remarks

   
 

Sharon F. Terry, Roundtable Co-Chair President and Chief Executive Officer Genetic Alliance

   
 

Geoffrey Ginsburg, Roundtable Co-Chair

 

Director, Center for Applied Genomics & Precision Medicine; Professor of Medicine and of Pathology and Biomedical Engineering

 

Duke University

   
8:35–8:45 a.m.

Charge to Workshop Speakers and Participants

   
 

Sam Shekar, Workshop Co-Chair

 

Chief Medical Officer

 

Northrop Grumman Health IT

   
 

Geoffrey Ginsburg, Workshop Co-Chair

 

Director, Center for Applied Genomics & Precision Medicine; Professor of Medicine and of Pathology and Biomedical Engineering

 

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
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

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

 

Professor, Division of Biostatistics; Director, Institute for Human Genetics

 

University of California, San Francisco;

 

Adjunct Investigator

 

Kaiser Permanente Division of Research

   
 

Josh Peterson

 

Assistant Professor of Biomedical Informatics, Assistant Professor of Medicine; Director of Health Information, Technology Evaluation

 

Vanderbilt University Medical Center

   
9:35–10:05 a.m. Advancing Research
   
 

Chris Chute

 

Section Head of Medical Informatics, Professor of Medical Informatics

 

Mayo Clinic

   
 

Tom Fowler

 

Director of Public Health

 

Genomics England

   
10:05–10:20 a.m. Break
   
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
10:20–10:50 a.m. Advancing Patient Care
   
 

Gail Jarvik

 

Head and Professor, Division of Medical Genetics

 

University of Washington School of Medicine

   
 

Stephen Leffler

 

Chief Medical Officer

 

University of Vermont Medical Center

   
10:50–11:45 a.m. Discussion with Speakers and Attendees
   
 

Chris Chute

 

Tom Fowler

 

Gail Jarvik

 

Stephen Leffler

 

Josh Peterson

 

Neil Risch

   
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
   
 

Chuck Friedman

 

Josiah Macy Jr. Professor of Medical Education

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
 

Chair, Department of Learning Health Sciences, Medical School

 

Professor of Information and Public Health

 

University of Michigan

   
  Health System Data Research Perspective
   
 

Colin Hill

 

Chief Executive Officer, President, Chairman, and Co-Founder

 

GNS Healthcare

   
  Health System Perspective
   
 

Alexander Ommaya

 

Senior Director, Clinical Effectiveness and Implementation Research

 

Association of American Medical Colleges

   
 

Fred Sanfilippo

 

Director, Healthcare Innovation Program

 

Emory University–Georgia Tech

   
1:35–2:35 p.m. Clinical End User
   
 

Jason Vassy

 

Section of General Internal Medicine, VA Boston Healthcare System Division of General Medicine

 

Brigham and Women’s Hospital;

 

Instructor

 

Harvard Medical School

   
  Patient Perspective
   
 

Dixie Baker

 

Senior Partner

 

Martin, Blanck & Associates

   
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
  Commercial Developer Perspective
   
 

Scott Moss

 

Research Informatics Software Developer

 

Epic

   
  Beyond the EHR
   
 

Ketan Paranjape

 

Director, Personalized Medicine

 

Intel

   
2:35–2:50 p.m. Break
   
2:50–3:50 p.m. Discussion with Speakers and Attendees
   
 

Dixie Baker

 

Chuck Friedman

 

Scott Moss

 

Alexander Ommaya

 

Ketan Paranjape

 

Fred Sanfilippo

 

Jason Vassy

   
 

Additional Discussant:

 

Sandy Aronson

 

Director of Information Technology

 

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

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
3:50–4:10 p.m. Call to Action
   
 

Sandy Aronson

 

Director of Information Technology

 

Partners Healthcare Personalized Medicine

   
 

John David Nolen

 

Managing Director, Laboratory Business Unit

 

Cerner Corporation

   
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
   
 

Lynn Etheredge

 

Tom Fowler

 

Chuck Friedman

 

Colin Hill

 

Stephen Leffler

 

John David Nolen

 

Sharon F. Terry

   
5:30–5:35 p.m. Summary and Concluding Remarks
   
 

Sam Shekar, Workshop Co-Chair

 

Chief Medical Officer

 

Northrop Grumman Health IT

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
 

Geoffrey Ginsburg, Workshop Co-Chair

 

Director, Center for Applied Genomics & Precision Medicine; Professor of Medicine and of Pathology and Biomedical Engineering

 

Duke University

   
5:35 p.m. Adjourn
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 65
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 66
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 67
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 68
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 69
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 70
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 71
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 72
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The inclusion of genomic data in a knowledge-generating health care system infrastructure is one promising way to harness the full potential of that information to provide better patient care. In such a system, clinical practice and research influence each other with the goal of improving the efficiency and effectiveness of disease prevention, diagnosis, and treatment. To examine pragmatic approaches to incorporating genomics in learning health care systems, the Institute of Medicine Roundtable on Translating Genomic-Based Research for Health hosted a workshop which convened a variety of stakeholder groups, including commercial developers, health information technology professionals, clinical providers, academic researchers, patient groups, and government and health system representatives, to present their perspectives and participate in discussions on maximizing the value that can be obtained from genomic information. The workshop examined how a variety of systems are capturing and making use of genomic data to generate knowledge for advancing health care in the 21st century. It also sought to evaluate the challenges, opportunities, and best practices for capturing or using genomic information in knowledge-generating health care systems. Genomics-Enabled Learning Health Care Systems summarizes the presentations and discussion of the workshop.

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