Our Impact

Health Data Sharing: A Roundtable Series with HHS

CODE co-hosted a year-long program with the Office of the Chief Technology Officer (CTO) at the U.S. Department of Health and Human Services (HHS) to find ways to improve how health data is shared and utilized for the public good. Through three Roundtables involving nearly 200 expert participants, the HHS Office of the CTO and CODE explored data-sharing challenges and opportunities for the emerging areas of Artificial Intelligence (AI) and the Social Determinants of Health (SDOH), and new ways of addressing data privacy concerns across all areas of health research. Participants discussed salient issues like challenges and applications of AI use in healthcare, those most at stake in health data sharing, and the various impacts of social determinants of health on individuals health and life outcomes.

The Open Data Roundtable series, Sharing and Utilizing Data to Enhance and Protect Health and Well-Being, funded by an engagement award from the Patient-Centered Outcomes Research Institute (PCORI),The series identified a number of principles and opportunities to advance the sharing of health data.

AI Applications: The Roundtable focused on ensuring privacy and consent, investing in technical infrastructure to unlock AI’s potential, heightening a focus on data quality and sharing, and leveraging AI to improve efficiency and reduce administrative burden. 

Balancing Privacy with Health Data Access: The Roundtable addressed ways to improve individual access to health data, create industry-wide ethical guidelines for consumer-generated health data, increase access to data on the SDOH, and using technology to improve patient consent for data sharing.

Leveraging Data on SDOH: The Roundtable participants recommended that HHS develop an SDOH data strategy with three critical goals: to define and standardize SDOH data, create sustainable SDOH data infrastructure, and support local and state-based decision-makers.

In addition to its regular reports, CODE created a new website, HealthDataSharing.org, as an ongoing resource with information from this Roundtable series and other sources. The website was developed as part of the Open Data Roundtable Series. The informational and instructional materials developed as part of each roundtable are presented on HealthDataSharing.org and include briefing papers, summary reports, and other valuable resources.