Appendix B

FEBRUARY 7, 2019—NAM MEETING AGENDA AND PARTICIPANT LIST

Generating Support and Demand for Health Data Sharing, Linkage, and Use

National Academy of Sciences Building
Lecture Hall
2101 Constitution Avenue, NW
Washington, DC 20418

Meeting Focus: Stakeholder convening for the National Academy of Medicine (NAM) Generating Support and Demand for Health Data Sharing, Linkage, and Use initiative to review the progress and develop principles, approaches, and strategies for addressing barriers to data sharing, linkage, and use

Motivating Questions: Each stakeholder workgroup in developing their stakeholder statement will consider the following:

1. Key issues: Does the stakeholder statement adequately capture the ethical, regulatory, cultural, and financial barriers to data sharing from the perspective of their constituent group?
2. Strategies: What are the opportunities and key policy and cultural levers for facilitating progress?
3. Practices: What are concrete next steps for advancing electronic health data sharing, linkage, and use, and who should steward implementation of these action steps?

Outcomes Anticipated: Development of three stakeholder statements that, in addition to articulating the importance of data sharing from their constituent’s perspective, describe the cultural, regulatory, financial, and ethical barriers, and identify long- and short-term solutions for accelerating progress.

Welcome from the National Academy of Medicine

Opening Remarks and Meeting Overview by Collaborative and Steering Committee Chairs

During this session, participants will hear from each set of co-chairs on the status of their stakeholder statement and highlight the barriers to data sharing their groups have identified and any outstanding issues for group consideration.

Patient and Family Engagement Leaders (10 minutes)

Research Community Oversight Leaders (10 minutes)

Health Care Executives Workgroup (10 minutes)

Q&A and Open Discussion

Participants will divide into their workgroups to address the outstanding issues and to develop strategies for overcoming barriers and specific action steps that can be accomplished in the near future to make progress.

Pick up lunch and continue with breakout activities.

Participants will reconvene to be briefed by the workgroup chairs on the breakout session discussions.

Patient and Family Engagement Leaders (10 minutes)

Research Community Oversight Leaders (10 minutes)

Health Care Executives Workgroup (10 minutes)

Q&A and Open Discussion

Participants will discuss ways in which recommendations of one group can bolster or impede recommendations of another group.

Moderators:

Comments and Thanks from the Collaborative Chair and the NAM

MEETING PARTICIPANTS

(all affiliations were accurate as of February 7, 2019)

Innovation Collaborative Chair

Richard Platt, M.D., M.S.

Professor, Harvard Medical School

Harvard Pilgrim Health Care Institute

Patient and Family Engagement Leaders

Co-Chairs

Stacey Lihn, B.A.

Parent Lead

National Pediatric Cardiology Quality Improvement Collaborative

Susan Woods, M.D., M.P.H.

President

Society for Participatory Medicine

Health Care Executives Workgroup Chair

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

Research Community Oversight Leaders Co-Chairs

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

Participants

Kevin Ban, M.D.

Chief Medical Officer

athenahealth, Inc.

Shayna Barbash

Senior Program Associate

Patient-Centered Outcomes Research Institute

Ricky Bloomfield, M.D.

Clinical and Health Informatics Lead

Apple Inc.

Helen Burstin, M.D., M.P.H., MACP

Executive Vice President and Chief Executive Officer

Council of Medical Specialty Societies

Tanisha Carino, Ph.D.

Executive Director

FasterCures

Kristin Carman, M.A., Ph.D.

Director of Public and Patient Engagement

Patient-Centered Outcomes Research Institute

Jodi Daniel, J.D., M.P.H.

Partner

Crowell & Moring LLC

Janet Freeman-Daily, M.S.

Stage IV Lung Cancer Survivor

Patient Advocate

Gray Connections

Patrick Getzen, FSA, MAAA

Senior Vice President, Chief Data and Analytics Officer

BlueCross BlueShield of North Carolina

Claudia Grossmann, Ph.D.

Program Officer

Patient-Centered Outcomes Research Institute

John Halamka, M.D.

Chief Information Officer

Beth Israel Deaconess Medical Center

John Keats, M.D.

National Medical Director

Cigna

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

Erin Mackay, M.P.H.

Associate Director, Health Information Technology Policy and Programs

National Partnership for Women & Families

Bradley Malin, Ph.D.

Director, Heath Information Privacy Laboratory; Professor of Biomedical Informatics

Vanderbilt University

Peter Margolis, M.D., Ph.D.

Co-Director, James M. Anderson Center for Health Systems Excellence

Cincinnati Children’s Hospital Medical Center

Kameron Matthews, M.D., J.D., FAAFP

Deputy Undersecretary of Health for Community Care

Veterans Health Administration

Michelle Meyer, Ph.D., J.D.

Assistant Professor and Associate Director, Center for Translational Bioethics and Health Care Policy

Geisinger

Sally Okun, RN, MMHS

Vice President of Advocacy, Policy & Patient Care

PatientsLikeMe

Pearl O’Rourke, M.D.

Director of Human Research Affairs

Partners HealthCare International

Casey Quinlan

Chief Messaging Officer

Mighty Casey Media

Lewis Sandy, M.D., FACP

Executive Vice President, Clinical Advancement

UnitedHealth Group

John Santa, M.D., M.P.H.

Director of Dissemination

OpenNotes

Michelle Schreiber, M.D.

Director, Quality Measurement and Value-Based Incentives Group

Centers for Medicare & Medicaid Services

Mark Schreiner, M.D.

Vice Chair, Committee for the Protection of Human Subjects

Children’s Hospital of Philadelphia

Joe Selby, M.D., M.P.H.

Executive Director

Patient-Centered Outcomes Research Institute

Andrew Sperling, M.A., J.D.

Director, Legislative and Policy Advocacy

National Alliance on Mental Illness

Jeremy Sugarman, M.D., M.P.H., M.A.

Harvey M. Meyerhoff Professor of Bioethics and Medicine

Johns Hopkins Berman Institute of Bioethics

Veronica (Ronnie) Todaro, M.P.H.

Senior Vice President, Chief Operating Officer

Parkinson’s Foundation

Danny van Leeuwen, M.P.H., RN, CPHQ

Principal

Health Hats

Paul Wallace, M.D.

Senior Scholar

AcademyHealth

Maryan Zirkle, M.D., M.S., M.A.

Senior Program Officer

Patient-Centered Outcomes Research Institute

Web Participants

Christine Bechtel, M.A.

President and Chief Strategist

X4 Health

Adrienne Boissy, M.D., M.A.

Chief Experience Officer

Cleveland Clinic

Hugo Campos

Chair of the Community Advisory Board

California Precision Medicine Consortium

C. Daniel Mullins, Ph.D.

Professor and Chair, Pharmaceutical Health Services Research Department

University of Maryland School of Pharmacy

Harold Paz, M.D., M.S.

Executive Vice President and Chief Medical Officer

Aetna Inc.

National Academies Staff

Inez Adams, Ph.D., M.A.

Senior Program Officer (Temporary)

Mahnoor Ahmed, M.Eng.

Research Associate

Jessica Brown

Executive Assistant to the Executive Officer

Anna Cupito, M.P.H.

Research Associate

Jeff Fishman

Senior Program Assistant (Temporary)

Fasika Gebru

Senior Program Assistant

Steve Olson

Science Writer

Sameer Siddiqi, Ph.D. Candidate

Technical Consultant

Danielle Whicher, Ph.D., M.H.S.

Senior Program Officer

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