Health Data Sharing Special Publication to Support Better Outcomes: Building a Foundation of Stakeholder Trust

Key Messages

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.

Steering Committee

• Erin Mackay (Co-Chair) – National Partnership for Women & Families
• Peter Margolis (Co-Chair) – Cincinnati Children’s Hospital Medical Center
• Helen Burstin – Council of Medical Specialty Societies
• Hugo Campos – California Precision Medicine Consortium
• Kristin Carman – Patient-Centered Outcomes Research Institute
• Christine Grady – National Institutes of Health
• Adrian Hernandez – Duke University Medical Center and Duke Clinical Research Institute
• Kathy Hudson, Hudson Works LLC
• Rainu Kaushal – New York-Presbyterian Hospital/Weill Cornell Medical Center
• Bradley Malin – Vanderbilt University
• Deven McGraw – Ciitizen Corporation
• C. Daniel Mullins – University of Maryland School of Pharmacy
• Adnan Munkarah – Henry Ford Health System
• Harold Paz – Aetna Inc.
• Richard Platt – Harvard University and Harvard Pilgrim Health Care Institute
• Michelle Schreiber – Centers for Medicare & Medicaid Services
• Joe Selby – Patient-Centered Outcomes Research Institute (until December 2019)
• Rachel Sherman – Food and Drug Administration
• Mona Siddiqui – Department of Health and Human Services (until February 2020)
• Frangiscos Sifakis – AstraZeneca
• Paul Wallace – AcademyHealth