On January 18, Sepsis Alliance hosted the inaugural roundtable convening of the National Sepsis Data Trust Initiative (NSDTI). This was the first in a series of meetings to be held in 2022, during which expert stakeholders will discuss the long-term strategy of NSDTI and the eventual creation of a data trust. January’s convening brought together over 50 experts in the fields of scientific research, clinical practice, government, patient advocacy, industry, public health policy, and data architecture for energetic discussions about the compilation, connection, and curation of already-existing data into user-ready longitudinal information. The group made recommendations about the development of specific use cases, the prioritization of data security and patients’ rights, and about leveraging the data housed in existing repositories.
In the end, it all came back to the patient. When Sepsis Alliance founder Carl Flatley, DDS, MSD, shared the heartbreaking story of his daughter Erin, lost unnecessarily to sepsis at the age of 23, every expert in the room was reminded of why they had gathered that day. A national sepsis data trust will give us a better understanding of sepsis and could lead to momentous changes in sepsis care. Better sepsis data will be a public good.
Future work is already underway and will highlight current efforts, or use cases, to look at sepsis data collection within hospital systems, states, and regions that can serve as a model for the NSDTI to learn from and leverage. NSDTI activities are generously supported by the Gordon and Betty Moore Foundation