The effective use and sharing of health data is foundational to the concept of a learning health system—one that leverages and shares data to learn from every patient experience and move toward transforming health, health care, and health equity. However, achieving this vision 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.

A new Special Publication from the National Academy of Medicine provides a broad overview of the barriers (economic, technologic, and cultural) that stand between our current data sharing paradigm and this ideal state. The Special Publication underlines that trust must be the foundation for moving forward, cultivated intentionally and longitudinally among all stakeholders, and includes vision statements from patient and family leaders; research and research oversight leaders; and health care executives.

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

The National Academy of Medicine, established in 1970 as the Institute of Medicine, is an independent organization of eminent professionals from diverse fields including health and medicine; the natural, social, and behavioral sciences; and beyond. It serves alongside the National Academy of Sciences and the National Academy of Engineering as an adviser to the nation and the international community. Through its domestic and global initiatives, the NAM works to address critical issues in health, medicine, and related policy and inspire positive action across sectors. The NAM collaborates closely with its peer academies and other divisions within the National Academies of Sciences, Engineering, and Medicine.

The views presented in this special publication – “Health Data Sharing to Support Better Outcomes: Building a Foundation of Stakeholder Trust” – are those of the authors and do not represent formal consensus positions of the NAM; the National Academies of Sciences, Engineering, and Medicine; or the authors’ organizations.

Download the special publication and associated resources:

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