Health Data Sharing to Support Better Outcomes: Building a Foundation of Stakeholder Trust (2020)
Chapter: Appendix C: August 23, 2019 - NAM Meeting Agenda and Participant List
Appendix C
AUGUST 23, 2019—NAM MEETING AGENDA AND PARTICIPANT LIST
Generating Support and Demand for Health Data Sharing, Linkage, and Use
National Academy of Sciences Building
Lecture Room
2101 Constitution Avenue, NW
Washington, DC 20418
Meeting Focus: Building partnerships and implementing principles and priorities to achieve the vision of a health system that shares data for continuous learning and improvement
Motivating Questions:
- Vision: Does the vision statement for a health system that shares data for continuous improvement clearly articulate the benefits of widespread data sharing and make a convincing case for addressing the outstanding cultural, regulatory, financial, and ethical barriers?
- Barriers and priorities: Do the stakeholder statements identify the most pressing cultural, regulatory, financial, and ethical barriers preventing widespread data sharing in the United States as well as feasible priorities for beginning to address those barriers in the near term?
- Resources: What resources are required to support the implementation of the key priorities and which organizations should be engaged in implementing those priorities?
- Affecting change: How can participants work to actualize the priorities identified following the meeting discussion?
Outcomes Anticipated: Commitments from key stakeholders to implement the principles and priorities for addressing cultural, regulatory, financial, and ethical barriers to widespread data sharing to support continuous learning and improvement in the U.S. health care system.
| 8:30 a.m. | Coffee and Light Breakfast Available |
| 9:00 a.m. | Welcome, Introductions, and Meeting Overview |
Welcome from the National Academy of Medicine and the Patient-Centered Outcomes Research Institute
J. Michael McGinnis, National Academy of Medicine
Joe Selby, Patient-Centered Outcomes Research Institute
| 9:30 a.m. | A Vision for a Health System That Shares Data for Continuous Improvement |
During this session, the steering committee co-chairs will provide an overview of the initiative and the vision statement for a health system that shares data for continuous improvement.
Erin Mackay, National Partnership for Women & Families
Peter Margolis, Cincinnati Children’s Hospital Medical Center
Q&A and Open Discussion
| 10:00 a.m. | Break |
| 10:15 a.m. | Data Sharing for Continuous Learning: Barriers, Opportunities, and Priorities |
Participants will hear from representatives of three stakeholder communities regarding the barriers to widespread data sharing to support continuous learning and improvement, as well as opportunities and key priorities for addressing those barriers.
Patient and Family Engagement
Susan Woods, Society for Participatory Medicine
Christine Bechtel, X4 Health
Research Oversight
Sarah Greene, Health Care Systems Research Network
Russell Rothman, Vanderbilt University
Health Care Executives
Rainu Kaushal, Weill Cornell Medical College and NewYork-Presbyterian Hospital
Gregg Meyer, Partners Healthcare International
Q&A and Open Discussion
| 11:15 a.m. | Building Support: Stakeholder Reactions |
Stakeholders representing key organizations for affecting change will comment on the feasibility of implementing the key priorities and the resources needed to support those efforts.
Patrick Gee, PFA Network, and Libby Hoy, Patient & Family-Centered Care Partners (Remote)
Michael Hodgkins, American Medical Association
Michael Lauer, National Institutes of Health
Steve Gravely, Gravely Group
Q&A and Open Discussion
| 12:15 p.m. | Lunch Keynote |
Participants will pick up lunch outside of the meeting room and return for a lunch keynote.
Jeremy Wertheimer, Biological Engineering Ventures and the Broad Institute
| 1:15 p.m. | Identifying Resources for Implementing Key Priorities |
Representatives from organizations with access to resources needed to implement the key priorities identified will comment on the feasibility of committing those resources to support change efforts over the next couple of years.
Teresa Zayas-Cabán, The Office of the National Coordinator for Health Information Technology
Kate Goodrich, Centers for Medicare & Medicaid Services
Hilary Heishman, Robert Wood Johnson Foundation
Margo Edmunds, AcademyHealth
Q&A and Open Discussion
| 2:15 p.m. | Break |
| 2:30 p.m. | Achieving the Vision: Building Support and Actualizing Change |
Participants will engage in a moderated discussion around next steps for actualizing change. The goal of the session is to reach consensus about critical next steps and achieve buy-in from key organizations and stakeholder representatives.
Moderators:
Erin Mackay, National Partnership for Women & Families
Peter Margolis, Cincinnati Children’s Hospital Medical Center
| 3:30 p.m. | Closing Remarks |
Final Thoughts and Thanks from the Patient-Centered Outcomes Research Institute and the National Academy of Medicine
Joe Selby, Patient-Centered Outcomes Research Institute
J. Michael McGinnis, National Academy of Medicine
MEETING PARTICIPANTS
(affiliations were accurate as of August 23, 2019)
Patient-Centered Outcomes Research Institute Partners
Kristin L. Carman, M.A., Ph.D.
Director of Public and Patient Engagement
Patient-Centered Outcomes Research Institute
Joe V. Selby, M.D., M.P.H.
Executive Director
Patient-Centered Outcomes Research Institute
Steering Committee Co-Chairs/Presenters
Erin Mackay, M.P.H.
Associate Director, Health Information Technology Policy and Programs
National Partnership for Women & Families
Peter A. Margolis, M.D., Ph.D.
Co-Director, James M. Anderson Center for Health Systems Excellence
Cincinnati Children’s Hospital Medical Center
Patient and Family Engagement Leaders
Co-Chairs/Presenters
Christine Bechtel
President and Chief Strategist
X4 Health
Susan Woods, M.D., M.P.H.
Past President
Society for Participatory Medicine
Health Care Executives Workgroup
Co-Chairs/Presenters
Rainu Kaushal, M.D., M.P.H.
Chief of Healthcare Policy and Research
Weill Cornell Medical College and NewYork-Presbyterian Hospital/Weill Cornell Medical Center
Gregg S. Meyer, M.D., M.Sc.
Chief Clinical Officer
Partners Healthcare International
Research Community Oversight Leaders
Co-Chairs/Presenters
Sarah Greene, M.P.H.
Executive Director
Health Care Systems Research Network
Russell Rothman, M.D., M.P.P.
Vice President for Population Health Research
Vanderbilt University
Speakers
Margo Edmunds, Ph.D.
Vice President for Evidence Generation and Translation
AcademyHealth
Kate Goodrich, M.D., M.H.S.
Director and Chief Medical Officer
Centers for Medicare & Medicaid Services
Steve Gravely, J.D.
Founder and Chief Executive Officer
Gravely Group
Hilary Heishman, M.P.H.
Senior Program Officer
Robert Wood Johnson Foundation
Michael Hodgkins, M.D., M.P.H.
Chief Medical Information Officer
American Medical Association
Michael Lauer, M.D.
Deputy Director for Extramural Research
National Institutes of Health
Jeremy Wertheimer
Chief Executive Officer
Biological Engineering Ventures and the Broad Institute
Teresa Zayas-Cabán, Ph.D.
Chief Scientist
The Office of the National Coordinator for Health Information Technology
Participants
Laura Adams, M.S.
Catalyst
X4 Health
Kevin Ban, M.D.
Chief Medical Officer
athenahealth, Inc.
Meryl Bloomrosen, M.B.A., M.B.I.
Senior Director, Federal Affairs
Premier
Christopher P. Boone, Ph.D.
Vice President, Global Medical Epidemiology & Big Data Analysis
Pfizer Inc.
Helen Burstin, M.D., M.P.H., MACP
Executive Vice President and Chief Executive Officer
Council of Medical Specialty Societies
Milton Corn, M.D., FACP, FACMI
Deputy Director for Research and Education
National Library of Medicine
Donna R. Cryer, J.D.
Interim Executive Director
People-Centered Research Foundation
Robert Emerson, Ph.D.
Vice President and Head of Strategic Data Management
BlueCross BlueShield of North Carolina
Patrick O. Gee, Sr., Ph.D., JLC
Healthcare Consultant/Consumer Advocate
PFA Network
Rachel Goldberg, Ph.D.
Director, Health and Long-Term Services and Support Issues, Office of Policy Development and Integration
American Association of Retired Persons
Ben Green, M.D.
Strategic Initiatives
Amazon
William Gregg, M.D., M.S., M.P.H.
Chief Clinical Transformation Officer, Vice President, Clinical Informatics
HCA Healthcare
Claudia Grossmann, Ph.D.
Program Officer
Patient-Centered Outcomes Research Institute
Kevin Haynes, Pharm.D., MSCE
Principal Scientist
HealthCore Inc.
Mary C. Hennessey, J.D.
General Counsel
Patient-Centered Outcomes Research Institute
Adrian Hernandez, M.D., M.H.S.
Vice Dean for Clinical Research
Duke Clinical Research Institute
Kristen Honey, Ph.D., PMP
Innovator in Residence
Department of Health and Human Services
Barbara J. Howard, M.D.
Assistant Professor of Pediatrics, Johns Hopkins University School of Medicine
Total Child Health, Inc.
Matthew Hurford, M.D.
Chief Medical Officer
University of Pittsburgh Medical Center
Javier Jimenez, M.D., M.P.H.
Vice President, Real-World Evidence
Sanofi
Burcu Kilic, Ph.D.
Director, Digital Rights Program and Research Director, Access to Medicines
Public Citizen
Susan R. Kirsh, M.D., M.P.H.
Acting Assistant Deputy Under Secretary for Health for Access to Care
Department of Veterans Affairs
Gloria Kupferman, M.B.A.
Chief Data Strategy Officer
American Hospital Association
John Lantos, M.D.
Director, Center for Bioethics
Children’s Mercy Kansas City
Emily Largent, J.D., Ph.D., RN
Assistant Professor, Medical Ethics and Health Policy
University of Pennsylvania Perelman School of Medicine
Tracie Lattimore, B.S.N., M.S.N., Dr.P.H.
Senior Policy Advisor, Executive Office of the President
Office of Science and Technology Policy
Jenny Luray, M.P.A.
Senior Advisor
Research!America
Bradley Malin, Ph.D.
Director, Heath Information Privacy Laboratory; Professor of Biomedical Informatics
Vanderbilt University
David Maron, M.A., M.H.S.
Statistician
Veterans Health Administration
Kameron Matthews, M.D., J.D., FAAFP
Deputy Undersecretary of Health for Community Care
Veterans Health Administration
John Mattison, M.D.
Chief Medical Information Officer
Kaiser Permanente
Ross McKinney, Jr., M.D.
Chief Scientific Officer
Association of American Medical Colleges
Jerry Menikoff, M.D., J.D.
Director
Office for Human Research Protections
Michelle Meyer, Ph.D., J.D.
Assistant Professor and Associate Director, Center for Translational Bioethics and Health Care Policy
Geisinger
C. Daniel Mullins, Ph.D.
Professor and Chair, Pharmaceutical Health Services Research Department
University of Maryland School of Pharmacy
Adnan Munkarah, M.D.
Executive Vice President and Chief Clinical Officer
Henry Ford Health System
Sally Okun, RN, M.M.H.S.
Vice President of Advocacy, Policy & Patient Care
PatientsLikeMe
Stacy Palmer, CPXP
Senior Vice President and Chief Operating Officer
The Beryl Institute
Elizabeth Pike, J.D., LLM
Associate General Counsel
Patient-Centered Outcomes Research Institute
Casey Quinlan
Chief Messaging Officer
Mighty Casey Media
Michael Radtke, M.D.
Clinical Informatics Physician
Epic
Brooke Rockwern, M.P.H.
Associate, Health IT Policy
American College of Physicians
Sally Rodriguez, M.P.H.
Chief of Staff
Health Care Cost Institute
Carla Rodriguez-Watson, Ph.D., M.P.H.
Scientific Director, Innovation in Medical Evidence Development and Surveillance
Reagan–Udall Foundation for the Food and Drug Administration
Susannah L. Rose, Ph.D.
Associate Chief Experience Officer
Cleveland Clinic
Lewis Sandy, M.D.
Executive Vice President, Clinical Advancement
UnitedHealth Group
Sophie Shen, Dr.P.H., PCMH, CCE
Director of Value-Based Care, Oncology
Johnson & Johnson
Mona Siddiqui, M.D., M.P.H., M.S.E.
Chief Data Officer, Office of the Chief Technology Officer
Department of Health and Human Services
Walter G. Suarez, M.D., M.P.H.
Executive Director, Health Information Technology Strategy and Policy
Kaiser Permanente
Chair-Elect, Health Level Seven International Board of Directors
Bharat Sutariya, M.D., FACEP
Vice President and Chief Medical Officer, Population Health
Cerner Corporation
Sharon Terry, M.A.
President and Chief Executive Officer
Genetic Alliance
Danny van Leeuwen, M.P.H., RN, CPHQ
Principal
Health Hats
Ryan Vega, M.D.
Diffusion of Excellence Lead
Veterans Health Administration
James Weinstein, D.O., M.S.
Senior Vice President, Microsoft Healthcare, Head of Innovation and Health Equity
Microsoft
John Wilbanks
Chief Commons Officer
Sage Bionetworks
Mariann Yeager, M.B.A.
Chief Executive Officer
The Sequoia Project
Maryan Zirkle, M.D., M.S., M.A.
Senior Program Officer
Patient-Centered Outcomes Research Institute
Web Participants
Richard Conroy, Ph.D., M.B.A.
Program Leader
National Institutes of Health
John Halamka, M.D., M.S.
Chief Information Officer
Beth Israel Deaconess Medical Center
Libby Hoy
Patient Family Advisor
Patient & Family-Centered Care Partners
Paul Wallace, M.D.
Senior Scholar
AcademyHealth
National Academies Staff
Mahnoor Ahmed, M.Eng.
Research Associate
Ayodola Anise, M.H.S.
Director, Value & Culture
Jessica Brown
Executive Assistant to the Executive Officer
Anna Cupito, M.P.H.
Research Associate
Fasika Gebru
Senior Program Assistant
Angana Roy, M.P.H.
Program Strategy Officer
Danielle Whicher, Ph.D., M.H.S.
Director, Science & Technology
J. Michael McGinnis, M.D., M.A., M.P.P.
Executive Director, Leadership Consortium for a Value & Science-Driven Health System
Leonard D. Schaeffer Executive Officer
