Sharing health data and information across stakeholder groups is the bedrock of a learning health system. As data and information are increasingly combined across various sources, their generative value to transform health, health care, and health equity increases significantly. Health data has proven its centrality in guiding action to change the course of individual and population health if properly stewarded and used.
In the context of the COVID-19 pandemic, both data and a lack of data illuminated profound shortcomings that affected health care and health equity. Yet, a silver lining of the pandemic was a surge in collaboration among data holders in public health, health care, and technology firms, suggesting that evolution in health data sharing is visible and tangible.
A new Special Publication from the National Academy of Medicine, Sharing Health Data: The Why, the Will, and the Way Forward, features some of these novel data-sharing collaborations born out of the pandemic. The publication was developed to provide practical context and implementation guidance that is critical to advancing the lessons learned identified in its parent NAM Special Publication, Health Data Sharing: Building a Foundation of Stakeholder Trust, developed with support from the Patient-Centered Outcomes Research Institute. The focus of this publication is to identify and describe exemplar groups to dispel the myth that sharing health data more broadly is impossible and illuminate the innovative approaches that are being taken to make progress in the current environment. It also serves as a resource for those waiting in the wings, showing how barriers were addressed and harvesting lessons and insights from those on the front lines.
In the meantime, knowledge is already available to foster better health care and health outcomes. The examples described in this volume suggest how intentional attention to health data sharing can enable unparalleled advances, securing a healthier and more equitable future for all.
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 – “Sharing Health Data: The Why, the Will, and the Way Forward” – are those of the authors and editors and do not represent formal consensus positions of the NAM; the National Academies of Sciences, Engineering, and Medicine; or the authors’ and editors’ organizations.
Download the special publication and associated resources: nam.edu/SharingHealthData.