Sharing Health Data

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 have proven their 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 an evolution in health data sharing is visible and tangible.


This Special Publication features some of these novel data-sharing collaborations, and has been 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. 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.

Table of Contents


Front Matter
1 Introduction and Initiative Background
2 Case Study: OpenNotes
3 Case Study: The University of Michigan (U-M)
4 Case Study: Luna
5 Case Study: COVID-19 Evidence Accelerator (EA)
6 Case Study: The National COVID Cohort Collaborative (N3C)
7 Case Study: The Yale Open Data Access (YODA) Project
8 Case Study: Vivli
9 Case Study: The Louisiana Public Health Institute (LPHI) and the Greater New Orleans Health Information Exchange
10 Case Study: The Sanford Health System and Sanford Data
11 Case Study: Blue Cross Blue Shield of North Carolina
12 Case Study: Mayo-Google Partnership
13 Conclusion
References
Appendix A: Key Informant Interview Questions