What is sepsis?
Who gets sepsis?
Where can I find more information about sepsis?
The Sepsis Alliance website includes information on sepsis for providers, patients, and families. You can find resources for sepsis survivors and caregivers, free clinical resources for improving sepsis care in your medical facility, and tools to get involved raising sepsis awareness.
Data Trust Basics
What is a patient data trust? How is it different than a disease registry?
A data trust is an anonymized, readily available collection of data about a group of patients with a shared condition or experience. It is similar to a disease registry — which is a collection of clinical data about a shared condition — with some key differences.
Registries are one-directional: data go into them, but only come out for a select few. There is little emphasis on the collaborative and contributory role of patients and other members of the public. Data trusts emphasize data as a public good, and so they are bi-directional: privacy-protected data go in and, for anyone invested in better understanding a condition like sepsis, can be accessed.
Data trusts are also explicit about governance and how data are managed. Trusts, unlike registries, often have structured frameworks for oversight of data’s use and privacy, which creates transparency that is in the public interest.
How soon will we have a National Sepsis Data Trust?
Creating an integrated National Sepsis Data Trust will depend on a collaborative approach between health care providers, insurers, researchers, patients, and government. NSDTI is engaging each of these critical stakeholders as we define the design and implementation plan for a National Sepsis Data Trust. We are currently in the exploratory phase.
Who would run a sepsis data trust?
It’s too soon to say how a National Sepsis Data Trust would operate, and who would run it. NSDTI is drafting a pathway to a National Sepsis Data Trust that will help answer this and other questions. Data governance is key to how a data trust would operate.
Will trusts require more paperwork by doctors and nurses?
No. The intention of a National Sepsis Data Trust is to leverage data that are already collected and reported to various organizations and governmental entities.
Don’t we already track the quality of care delivered to sepsis patients?
Medicare and a number of states require reporting of some sepsis-related information, usually in summary form. These data are useful in the aggregate but are not helpful to understand which patients are more likely to get sepsis and which treatments work best. A National Sepsis Data Trust would leverage and integrate these and other existing sepsis tracking tools.
What organizations would report data to the sepsis data trust?
It’s too soon to know the best approach to combine and integrate sepsis data from different organizations, in different parts of the country, into a National Sepsis Data Trust. There are a number of different models, and NSDTI is drafting a pathway to a National Sepsis Data Trust that will help answer this and other questions.
What’s the role of NSDTI?
Our role is to champion the creation of a National Sepsis Data Trust. To accomplish this, NSDTI is engaging stakeholders on the design and implementation plan for a National Sepsis Data Trust, pursuing pilots and initiatives, and promoting necessary legislation and regulation.
Is NSDTI the same as National Sepsis Registry Initiative?
NSDTI was formerly known as National Sepsis Registry Initiative (NSRI). In 2020, NSRI was founded with the mission to create a connected National Sepsis Registry. Eventually, the team behind the initiative determined that a registry was less desirable than a data trust. Data trusts are more available to the general public and, therefore, more of a public good. The end goal is the same: to connect sepsis-relevant data in order to better understand, and combat, sepsis.
In 2022, National Sepsis Registry Initiative officially became National Sepsis Data Trust Initiative.
How does NSDTI relate to Sepsis Alliance?
Sepsis Alliance founded NSDTI as an independent, consensus-driven, multi-stakeholder initiative with a mission to create a National Sepsis Data Trust.
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