HealthDataSharing.org was developed as part of the Patient Centered Outcomes Research Institute (PCORI) funded Open Data Roundtable Series: Sharing and Utilizing Data to Enhance and Protect Health and Well-Being. Health and medical progress depends on the ability to share and use data on a wide range of issues, from food safety and drug effectiveness to patient treatment outcomes and public health indicators. While the U.S. Department of Health and Human Services (HHS) manages a huge amount of data, there are many obstacles to sharing and using this data so that its full value is realized.
The Office of the Chief Technology Officer (CTO) at HHS and the Center for Open Data Enterprise (CODE) co-hosted a series of three roundtables for experts inside and outside of government to find ways to improve how health data is shared and utilized for the public good. This project was approved for expansion in July 2020 to host an additional Roundtable on Using SDOH Data to Combat COVID-19 and Support Economic Recovery. HealthDataSharing.org presents findings from those roundtables, further research by CODE, and additional input from key stakeholders. CODE would particularly like to thank Mona Siddiqui, former Chief Data Officer in the HHS Office of the CTO, and Sanjay Koyani, Executive Director for Innovation in the HHS Office of the CTO, for their support of this project.
The roundtable series convened a broad range of stakeholders across multiple levels of government, the private sector, and the research community to improve health data sharing for the public good. Each roundtable was designed to help build a community that can advance health data sharing in different ways. Participation in the Roundtables is by invitation only to ensure the most productive mix of perspectives and expertise. The roundtables feature keynotes, lightning talks, and breakout sessions to identify challenges and opportunities and make specific recommendations. The project focused on three main objectives:
- Find more effective ways to share health data within the federal government, with state and local governments, and with the public
- Recommend priorities for sharing high-value government data for health research and applications
- Provide key stakeholders and networks with information and guidance on health data sharing
The informational and instructional materials developed as part of each roundtable, including briefing papers and summary reports, are presented on HealthDataSharing.org and will be used for broader outreach and stakeholder engagement through PCORI’s networks.