In January 2022, Sepsis Alliance hosted the inaugural roundtable convening of the National Sepsis Data Trust Initiative. Over 50 experts in the fields of scientific research, clinical practice, government, patient advocacy, industry, public health policy, and data architecture met to discuss the long-term strategy of NSDTI and the eventual creation of a data trust.
A summary of their findings and recommendations has now been published. Their suggested strategies for NSDTI’s future include:
- Tailor data collection to specific needs: The experts recommend that NSDTI tailors its data collection efforts to address the needs of those working in the field. “NSDTI should focus on identifying the specific ways in which better sepsis data can spur innovation, quality, equity, and public health,” the summary reads. “We must collectively answer the question, ‘Who are the end users, and what data is necessary for their work?’ and collect data with these use cases in mind.”
- Harmonize vocabularies and definitions: According to the roundtable experts, there are currently “a variety of disease definitions, care protocols, reimbursement codes, and quality measures” within sepsis care, which results in non-standardized data and confusion. “For NSDTI to be effective, stakeholders will need to harmonize these definitions,” they write.
- Make use of existing data repositories: According to the roundtable experts, “there are numerous projects and initiatives underway and pre-existing sepsis-related data registries.” Rather than start from scratch, they recommend that NSDTI “inventory and potentially leverage” those datasets.
- Prioritize privacy: “The governance model for the NSDT should prioritize stewardship of data security and patient privacy,” the experts recommend. “Data in the trust must be protected and secure.”
- Assure broad access: “Data housed in the NSDT should be available to all qualified users,” the experts recommend. “Qualified users” may include “patient groups, academic researchers, innovators, industry, public health professionals, and others deemed to have a role in sepsis care.”
To read the full summary of their recommendations, click here.