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

A Special Publication from the National Academy of Medicine

 

The effective use of data is foundational to the concept of a learning health system鈥攐ne 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鈥攑atients, 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鈥檚 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鈥檚 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

Patient and Family Leaders Working Group

  • Stacey Lihn (Co-Chair) – National Pediatric Cardiology Quality Improvement Collaborative
  • Susan Woods (Co-Chair) – Society for Participatory Medicine
  • Christine Bechtel – X4 Health
  • Janet Freeman-Daily – Patient Advocate and Gray Connections
  • Kameron Matthews – Veterans Health Administration
  • Sally Okun – PatientsLikeMe (until December 2019)

 

 

  • Casey Quinlan – Mighty Casey Media
  • John Santa – OpenNotes
  • Andrew Sperling – National Alliance on Mental Illness
  • Sharon Terry – Genetic Alliance
  • Veronica Todaro – Parkinson鈥檚 Foundation
  • Danny van Leeuwen – Health Hats

Research and Research Oversight Leaders Working Group

 

  • Sarah Greene (Co-Chair) – Health Care Systems Research Network (until May 2020)
  • Russel Rothman (Co-Chair) – Vanderbilt University
  • Tanisha Carino – FasterCures
  • Jodi Daniel – Crowell & Moring LLP
  • Bob Harrington – Stanford University

 

 

  • John Lantos – Children鈥檚 Mercy Kansas City
  • Emily Largent – University of Pennsylvania Perelman School of Medicine
  • Michelle Meyer – Geisinger鈥檚 Center for Translational Bioethics and Health Care Policy
  • Pearl O’Rourke – Partners HealthCare International
  • Mark Schreiner – Children鈥檚 Hospital of Philadelphia
  • Jeremy Sugarman – Berman Institute of Bioethics, Johns Hopkins University

Health Care Executives Working Group

 

  • Rainu Kaushal (Co-Chair)聽– New York-Presbyterian Hospital/Weill Cornell Medical Center
  • Gregg S. Meyer (Co-Chair) – Partners HealthCare International
  • Kevin Ban – athenahealth, Inc.
  • Ricky Bloomfield – Apple Inc.
  • Adrienne Boissy – Cleveland Clinic
  • John Bulger – Geisinger

 

 

  • Raj Davda – Cigna
  • Robet Emerson – BlueCross BlueShield of North Carolina
  • Julie Gerberding – Merck & Co., Inc.
  • John Halamka – Mayo Clinic
  • Lewis Sandy – UnitedHealth Group
  • Darshak Sanghavi – OptumLabs
  • Mariann Yeager – The Sequoia Project

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