Appendix A

JUNE 11, 2018—NAM MEETING AGENDA AND PARTICIPANT LIST

Generating Stakeholder Support and Demand for
Leveraging and Sharing Data for Continuous Learning

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

Meeting Focus: A shared vision for generating stakeholder support and demand for data sharing, linkage, and use for a continuously learning health system

Motivating Questions:

1. Vision: What is our shared vision for a health system that leverages and shares data to learn from patients, clinicians, and payers and feeds the results back to end users to continuously improve care and outcomes? What are the essential elements needed to achieve this vision? What is the role of stakeholder support and demand in achieving this vision?
2. Stakeholders: What are the concerns of relevant stakeholder groups, specifically, health system and health plan executives, patient and family leaders, and the research oversight community, in advancing data sharing, linkage, and use? What are the barriers and challenges facing each group and what opportunities and strategies can each group leverage to achieve progress?
3. Case examples: For each stakeholder community, what case examples demonstrate the barriers or potential strategies to leveraging and linking health data to support continuous learning?

Outcomes Intended: Develop a shared vision, common to all stakeholder groups, for leveraging and linking health data to support continuous learning; and identify case studies that demonstrate practical opportunities for progress.

Welcome from the National Academy of Medicine and the Patient-Centered Outcomes Research Institute

Opening Remarks and Meeting Overview by the Clinical Effectiveness Research Innovation Collaborative Co-Chairs

Review of the aims of the steering committee followed by a discussion of the initiative logic model, the inputs and outputs of a continuously learning health system, with specific examples, and the strategic and operational elements that facilitate data sharing to support continuous learning.

Open Discussion

Identification of key considerations and elements necessary, from the patient and family perspective, to build support and demand for leveraging and linking data and information to support continuous learning.

Moderators:

Open Discussion

Identification of key considerations and elements necessary, from the perspective of the research oversight community, to build support and demand for leveraging and linking data to support continuous learning.

Moderators:

Open Discussion

Identification of key considerations and elements necessary, from the health plan and health system perspective, to build support and demand for leveraging and linking data to support continuous learning.

Moderators:

Open Discussion

Building on earlier discussions, the steering committee will develop a vision for a continuously learning health system that leverages data to support continuous learning, discuss the significance and strategy for building demand, and identify common challenges and opportunities spanning stakeholder groups.

Moderator:

Open Discussion

The steering committee will discuss writing assignments and the timeline for the development of the vision statement.

Moderator:

Open Discussion

Comments from the Co-Chairs

Thanks from the National Academy of Medicine and the Patient-Centered Outcomes Research Institute

MEETING PARTICIPANTS

(all affiliations were accurate as of June 11, 2018)

Andrew E. Baskin, M.D.

Vice President, National Medical Director for Quality and Provider Performance Measurement

Aetna Inc.

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

Executive Vice President and Chief Executive Officer

Council of Medical Specialty Societies

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

Director of Public and Patient Engagement

Patient-Centered Outcomes Research Institute

Jeff Hurd, M.S., Ph.D., M.S.

Regional Clinical Account Director

AstraZeneca

Richard E. Kuntz, M.D., M.S.

Senior Vice President, Chief Medical and Scientific Officer

Medtronic

Kiely Law, M.D., M.P.H.

Research Director, Interactive Autism Network

Kennedy Krieger Institute

Erin Mackay, M.P.H.

Associate Director, Health Information Technology Programs

National Partnership for Women & Families

Bradley Malin, Ph.D.

Director, Heath Information Privacy Laboratory

Vanderbilt University

C. Daniel Mullins, Ph.D.

Professor, Pharmaceutical Health Services Research Department

University of Maryland School of Pharmacy

Richard Platt, M.D., M.Sc.

Professor and Chair of the Department of Population Medicine and Executive Director of the Harvard Pilgrim Health Care Institute

Harvard Medical School

Laura Rodriguez, Ph.D.

Director, Division of Policy, Communications, and Education

National Human Genome Research Institute

Michelle B. Schreiber, M.D.

Senior Vice President and Chief Quality Officer

Henry Ford Health System

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

Executive Director

Patient-Centered Outcomes Research Institute

Rachel Sherman, M.D., M.P.H.

Principal Deputy Commissioner

Food and Drug Administration

Mona Siddiqui, M.D., M.P.H.

Chief Data Officer, Office of the Chief Technology Officer

Department of Health and Human Services

Paul Wallace, M.D.

Senior Scholar

AcademyHealth

National Academies Staff

Mahnoor Ahmed, M.Eng.

Research Associate

Hannah Hirasuna

Intern

Gwen Hughes

Research Coordinator

Erin Jones

Intern

Henrietta Osei-Anto, M.A., M.P.P.

Senior Program Officer

Ioana Petricel

Senior Program Assistant

Sameer Siddiqi, Ph.D. Candidate

Technical Consultant

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

Senior Program Officer

J. Michael McGinnis, M.D., M.P.P.

Executive Director, Leadership Consortium for a Value & Science-Driven Health System

Leonard D. Schaeffer Executive Officer

Patient-Centered Outcomes Research Institute Staff

Shayna Barbash

Program Associate

Claudia Grossmann, Ph.D.

Senior Program Officer

Kimberly Marschhauser, Ph.D.

Program Officer

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

Senior Program Officer

Web Participants

Adrian Hernandez, M.D., M.H.S.

Director, Health Services and Outcomes Research

Duke University Medical Center and Duke Clinical Research Institute

Michelle Johnston-Fleece, M.P.H.

Senior Program Officer

Patient-Centered Outcomes Research Institute