The effective use of data is foundational to the concept of a learning health system—one that leverages and shares data to learn from every patient experience, and feeds the results back to clinicians, patients and families, and health care executives to transform health, health care, and health equity. More than ever, the American health care system is in a position to harness new technologies and new data sources to improve individual and population health.

Learning health systems are driven by multiple stakeholders—patients, clinicians and clinical teams, health care organizations, academic institutions, government, industry, and payers. Each stakeholder group has its own sources of data, its own priorities, and its own goals and needs with respect to sharing that data. However, in America's current health system, these stakeholders operate in silos without a clear understanding of the motivations and priorities of other groups. The three stakeholder working groups that served as the authors of this Special Publication identified many cultural, ethical, regulatory, and financial barriers to greater data sharing, linkage, and use. What emerged was the foundational role of trust in achieving the full vision of a learning health system.

This Special Publication outlines a number of potentially valuable policy changes and actions that will help drive toward effective, efficient, and ethical data sharing, including more compelling and widespread communication efforts to improve awareness, understanding, and participation in data sharing. Achieving the vision of a learning health system will require eliminating the artificial boundaries that exist today among patient care, health system improvement, and research. Breaking down these barriers will require an unrelenting commitment across multiple stakeholders toward a shared goal of better, more equitable health.

We can improve together by sharing and using data in ways that produce trust and respect. Patients and families deserve nothing less.

Contents

• LEADERSHIP INNOVATION IMPACT: for a healthier future
• ABOUT THE NATIONAL ACADEMY OF MEDICINE
• STEERING COMMITTEE AND WORKING GROUP PARTICIPANTS
• REVIEWERS
• FOREWORD
• PREFACE
• ACRONYMS AND ABBREVIATIONS
• EXECUTIVE SUMMARY
• 1. INTRODUCTION
  • OVERVIEW
  • STEERING COMMITTEE AND VISION STATEMENT
  • STAKEHOLDER WORKING GROUP STATEMENTS
  • OVERLAPPING THEMES
• 2. VISION AND STRATEGY BACKGROUND
  • A VISION FOR A LEARNING HEALTH SYSTEM SHARING DATA FOR CONTINUOUS IMPROVEMENT
  • STRATEGIC APPROACH
  • CONCLUSION
• 3. STATEMENT OF THE PATIENT AND FAMILY LEADERS
  • CONCERNS AND BARRIERS
  • PRIORITIES AND ACTION STEPS
  • SOLUTIONS IMPACTING MULTIPLE PRIORITY BARRIERS
  • RESPONSIBLE ORGANIZATIONS
• 4. STATEMENT OF THE RESEARCH AND RESEARCH OVERSIGHT LEADERS
  • CONCERNS AND BARRIERS
  • PRIORITIES AND ACTION STEPS
  • RESPONSIBLE ORGANIZATIONS
• 5. STATEMENT OF THE HEALTH CARE EXECUTIVES
  • CONCERNS AND BARRIERS
  • PRIORITIES AND ACTION STEPS
  • COMMON ISSUES
  • RESPONSIBLE ORGANIZATIONS
• 6. CONCLUSION
  • OVERLAPPING BARRIERS AND SOLUTIONS
  • PRIORITIES FOR THE FIELD
• REFERENCES
• Appendix A. JUNE 11, 2018—NAM MEETING AGENDA AND PARTICIPANT LIST
• Appendix B. FEBRUARY 7, 2019—NAM MEETING AGENDA AND PARTICIPANT LIST
• Appendix C. AUGUST 23, 2019—NAM MEETING AGENDA AND PARTICIPANT LIST

Suggested citation:

Whicher, D., M. Ahmed, S. Siddiqi, I. Adams, M. Zirkle, C. Grossmann, and K. L. Carman, Editors. 2021. Health Data Sharing to Support Better Outcomes: Building a Foundation of Stakeholder Trust. NAM Special Publication. Washington, DC: National Academy of Medicine.

This publication has undergone peer review according to procedures established by the National Academy of Medicine (NAM). Publication by the NAM signifies that it is the product of a carefully considered process and is a contribution worthy of public attention, but does not constitute endorsement of conclusions and recommendations by the NAM. The views presented in this publication are those of individual contributors and do not represent formal consensus positions of the authors' organizations; the NAM; or the National Academies of Sciences, Engineering, and Medicine.

Library of Congress Control Number: 2020948195

Printed in the United States of America