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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
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Appendix A

Workshop Agenda

Implementing and Evaluating Genomic Screening Programs in Health Care Systems:
A Workshop
November 1, 2017

The Keck Center of the National Academies, Room 100
500 Fifth Street, NW
Washington, DC 20001

BACKGROUND

Genomic applications can be embedded into a broad range of clinical and research activities. Increasing amounts of genomic data are currently being generated and incorporated into a variety of health care systems1 in the United States and abroad, and each instance presents a natural “experiment” offering the opportunity for learning about the integration of genomics into health care ecosystems. Of particular interest is genomic screening or genomics-based screening programs, referred to in the context of this workshop as clinical screening programs with the goal of examining genes or variants in unselected populations in order to identify individuals at risk for future disease or adverse drug outcomes for which there are clinical actions to mitigate risk. Many current genomics-based screening programs examine germline variability in specific genes that have been evaluated and recommended by groups such as the American College of Medical Genetics and Genomics, U.S. Preventive Services Task Force, or Evaluation of Genomics Applications in Practice and Prevention. There is potential strength in evaluating common outcomes of implementing these screening programs across multiple large health care systems and organizations that incorporate data from diverse population groups in order to

___________________

1 For the purposes of this workshop, health systems are referred to as entities providing medical care to a select population. Examples may include a for-profit or nonprofit health care delivery system or a public health system.

Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×

understand how genomics may or may not ultimately benefit all population groups. Tracking data from early implementers on the potential health benefits and harms of genomic screening programs may provide important evidence needed to assess the effectiveness and safety of genomic screening in unselected populations.2

AGENDA

8:30 a.m. Opening Remarks
GEOFFREY GINSBURG, Roundtable Co-Chair
Director, Duke Center for Applied Genomics & Precision Medicine
Professor, Medicine, Pathology, and Biomedical Engineering
Duke University Medical Center
8:35 a.m. Charge to Workshop Speakers and Participants
W. GREGORY FEERO, Workshop Co-Chair
Associate Editor, Journal of the American Medical Association
Faculty
Maine Dartmouth Family Medicine Residency Program
DAVID VEENSTRA, Workshop Co-Chair
Professor and Associate Director
Pharmaceutical Outcomes Research and Policy Program
University of Washington, Seattle
8:50 a.m. Keynote Lecture
MICHAEL MURRAY
Director of Clinical Genomics
Geisinger Health System
9:10 a.m. Clarifying Questions from Workshop Participants

___________________

2 The term population in the context of this workshop refers to individuals in the context of a health system that has implemented or is planning to implement a genomics-based screening program.

Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×

SESSION I: EVIDENCE CONSIDERATIONS FOR INTEGRATING GENOMICS-BASED PROGRAMS INTO HEALTH SYSTEMS

Session Objective:

  • To examine the types of clinical data and other evidence that are currently being collected by genomics-based programs at health systems and to consider opportunities for advancing knowledge of clinical utility.

Key Questions:

  • What evidence will your program generate, and how will it be useful in the future in terms of evaluating the value and utility of these activities?
  • Are you currently sharing information from your genomics-based program or data across systems or organizations? How and with whom?
  • What outcomes are important for genomics-based programs to measure? What potential impacts are there on care when deciding to invest in genomics-based programs?
  • If you run into challenges such as a lack of evidence of utility or any harms (e.g., privacy, discrimination) to participants from implementing a genetic test in your program, how do you plan to track these outcomes and address them?

Session Moderator: George Isham, Senior Advisor, HealthPartners

9:20 a.m. KATRINA GODDARD
Senior Investigator
Kaiser Permanente Center for Health Research
9:35 a.m. BRUCE KORF
Wayne H. and Sara Crews Finley Chair in Medical Genetics
Professor and Chair, Department of Genetics
Director, Heflin Center for Genomic Sciences
University of Alabama at Birmingham School of Medicine
9:50 a.m. DEBRA LEONARD
Chair of Pathology and Laboratory Medicine
University of Vermont Medical Center
Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
10:05 a.m. Panel Discussion with Speakers and Workshop Participants
KATRINA GODDARD, BRUCE KORF, DEBRA LEONARD, MICHAEL MURRAY
10:35 a.m. Break

SESSION II: FINANCIAL CONSIDERATIONS FOR IMPLEMENTING GENOMICS-BASED SCREENING PROGRAMS

Session Objectives:

  • To discuss the financial considerations associated with genomics-based programs, including
    • Available models that can effectively evaluate genomics-based programs and the value they represent to their institution;
    • Approaches to measuring return on investment from implementation of genomics-based screening programs; and
    • Best practices for data sharing related to economic evaluations of genomics-based programs.

Key Questions:

  • What business models are available to fund genomics-based screening programs? Would this program remain a priority for your organization if the current source of funding was no longer available? Is the program built to be sustainable? How?
  • Are genomics-based programs affordable? Do they provide clinical utility or other value that can justify implementing the program? Beyond the cost of the genetic test itself, what are the downstream costs of care that need to be taken into account?
  • How can institutions evaluate the opportunity costs associated with genomics implementation into a health system?
  • Are there models that support data sharing between individual health care systems that are implementing genomics-based programs?
  • What challenges do these programs create for clinical workflow?

Session Moderator: David Veenstra, Professor and Associate Director of Pharmaceutical Outcomes Research and Policy Program, Department of Pharmacy, University of Washington, Seattle

Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
10:50 a.m. BRADFORD POWELL
Clinical Assistant Professor
Department of Genetics
University of North Carolina at Chapel Hill
11:05 a.m. JOSH PETERSON
Associate Professor of Biomedical Informatics and Medicine
Vanderbilt University Medical Center
11:20 a.m. DEAN REGIER
Assistant Professor, School of Population and Public Health
University of British Columbia
11:35 a.m. Panel Discussion with Speakers and Audience Members
12:05 p.m. Working Lunch

SESSION III: CONSIDERING APPROACHES TO OPTIMIZE DATA SHARING AMONG EARLY IMPLEMENTERS OF GENOMICS-BASED PROGRAMS

Session Objective:

  • To explore new ideas and opportunities for collaborative networks as a way for sharing economic and clinical outcome data about genomics-based programs between and within large-scale health care organizations.

Key Questions:

  • How could data sharing across systems and organizations affect the measurement of value and clinical utility of genomics-based programs?
  • Are there incentives for overcoming cultural and technological barriers to sharing data across systems and organizations? What are the incentives? If they do not exist, what is needed?
  • What common outcomes or endpoints would be useful to collect from early implementers of genomics-based programs? What are the ideal data elements that should be collected from genomics-based programs?
Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×

Session Moderator: Marc Grodman, Assistant Professor of Clinical Medicine, Columbia University

1:05 p.m. REX CHISHOLM
Vice Dean, Scientific Affairs and Graduate Education
Adam and Richard T. Lind Professor of Medical Genetics
Northwestern University
1:20 p.m. ERIC BOERWINKLE
Dean and M. David Low Chair in Public Health
Kozmetsky Family Chair in Human Genetics
University of Texas Health Science Center at Houston
1:35 p.m. RICHARD TURNER
Clinical Research Fellow in Clinical Pharmacology and Therapeutics
Royal Liverpool University Hospital and University of Liverpool
1:50 p.m. LORI ORLANDO
Associate Professor of Medicine
Duke University School of Medicine
2:05 p.m. Panel Discussion with Speakers and Workshop Participants
2:35 p.m. Break

SESSION IV: WORKING TOWARD THE NEEDS OF PARTICIPANTS AND IMPROVING DIVERSITY AND EQUITY

Session Objective:

  • To consider policy issues associated with implementation of genomics-based programs in health systems and potentially in public health, including
    • Approaches to ensuring data security and participant privacy and
    • Methods for ensuring that genomics-based programs are accessible to a diverse group of participants.
Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×

Key Questions:

  • Is this the right time to be studying use of genomic data and population health management in health systems? Why?
  • How can genomics-based programs be designed in such a way to reach a diverse group of participants?
  • How can genomics-based programs be equitably distributed regardless of educational status, income level, ethnicity, or other variables?
  • If the early evidence indicates that genomics-based programs do not provide value and utility (and potentially demonstrate harms to participants), are the programs discontinued? How are they deimplemented and/or assessed again at a later date?

Session Moderator: Vence Bonham, Senior Advisor to the National Human Genome Research Institute Director on Genomics and Health Disparities, National Human Genome Research Institute, National Institutes of Health

2:50 p.m. SARA KNIGHT
Professor, Division of Preventive Medicine, School of Medicine
University of Alabama at Birmingham
3:05 p.m. CAROL HOROWITZ
Professor, Population Health Science and Policy
Mount Sinai Hospital
3:20 p.m. ABEL KHO
Director, Center for Health Information Partnerships
Northwestern University
3:35 p.m. Panel Discussion with Speakers and Workshop Participants

SESSION V: NEXT STEPS TOWARD IMPROVING HEALTH THROUGH THE INTEGRATION OF GENOMICS-BASED PROGRAMS

Session Objectives:

  • To discuss ideas for actionable next steps that could support the implementation of genomics-based programs in health systems.
Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
  • To consider infrastructure and resources that are needed to share data collected in clinical care across health systems for health outcomes and economics research.

Key Questions:

  • Thinking about the workshop discussions today, what would be a game changer in terms of facilitating data sharing among early implementers of genomics-based programs?
  • What next steps are critical for building an active learning model for outcome data on benefits, harms, and costs collected in genomics-based programs?

Session Moderator: W. Gregory Feero, Workshop Co-Chair, Faculty, Maine Dartmouth Family Medicine Residency Program

4:05 p.m. A Model for Accelerating Evidence Generation for Genomic Technologies in the Context of a Learning Health Care System
CHRISTINE LU
Associate Professor
Department of Population Medicine
Harvard Medical School
4:20 p.m. Clarifying Questions
4:30 p.m. Final Panel Discussion: What policies and infrastructure need to be in place to enable data sharing across institutions?
KATRINA GODDARD
GEORGE ISHAM
ABEL KHO
DEBRA LEONARD
MICHAEL MURRAY
JOSH PETERSON
Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
5:05 p.m. Final Remarks from Workshop Co-Chairs
W. GREGORY FEERO, Workshop Co-Chair
Associate Editor, Journal of the American Medical Association
Faculty
Maine Dartmouth Family Medicine Residency Program
DAVID VEENSTRA, Workshop Co-Chair
Professor and Associate Director
Pharmaceutical Outcomes Research and Policy Program
University of Washington, Seattle
5:15 p.m. Adjourn
Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×

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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
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Genomic applications are being integrated into a broad range of clinical and research activities at health care systems across the United States. This trend can be attributed to a variety of factors, including the declining cost of genome sequencing and the potential for improving health outcomes and cutting the costs of care. The goals of these genomics-based programs may be to identify individuals with clinically actionable variants as a way of preventing disease, providing diagnoses for patients with rare diseases, and advancing research on genetic contributions to health and disease. Of particular interest are genomics- based screening programs, which will, in this publication, be clinical screening programs that examine genes or variants in unselected populations in order to identify individuals who are at an increased risk for a particular health concern (e.g., diseases, adverse drug outcomes) and who might benefit from clinical interventions.

On November 1, 2017, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to explore the challenges and opportunities associated with integrating genomics-based screening programs into health care systems. This workshop was developed as a way to explore the challenges and opportunities associated with integrating genomics-based programs in health care systems in the areas of evidence collection, sustainability, data sharing, infrastructure, and equity of access. This publication summarizes the presentations and discussions from the workshop.

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