FAQ

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.

Individuals with expertise and/or an interest in SIC’s mission are encouraged to apply for membership as an individual contributor. Please note that individual contributors are considered non-voting members.

While voting rights are reserved exclusively for organizational representatives and are not extended to unaffiliated individual contributors, these rights are currently only applicable to 1) approving the creation of new SIC communities and 2) approving changes to the SIC Charter. All SIC members, voting and non-voting, are eligible to recommend the creation of new SIC communities and changes to the Charter.

SIC members are encouraged to invite colleagues with expertise and/or an interest in SIC activities. If you would like to invite a guest or guests, please provide at least 48 hours advance notice to the SIC Project Supervisor, Shion Chang, at schang@sepsis.org.

Current membership rates for organizations are outlined here. If your organization faces significant financial constraints that preclude participation without a variation from the annual dues, a request and brief justification for a dues variance can be sent to the SIC Project Supervisor. Federal, state, local, or international government agencies are not charged for membership to SIC. Unaffiliated individual contributors are also not charged for membership to SIC.

SIC is organized into several community groups, each focused on a specific priority issue area. In the medical device ecosystem, collaborative communities bring together stakeholders to achieve common outcomes, solve shared challenges, and leverage collective opportunities. The Infection Management/Sepsis Collaborative Community (IMSCC) provides a venue to enhance the understanding of SIC members’ perspectives by fostering communication and knowledge sharing, to better align on regulatory requirements and science in the medical device ecosystem. The development of the IMSCC was guided by the U.S. Food and Drug Administration (FDA) Center for Devices and Radiological Health (CDRH) Collaborative Communities Toolkit.

Thank you for your interest in SIC. You can begin the process of becoming a member by completing the membership application form here.

SIC is organized into several community groups, each focused on a specific priority issue area. The Sepsis Data Community (SDC) is an SIC member initiative to create a national sepsis data trust.

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.

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.

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.

It’s too soon to say how a national data trust would operate, and who would run it. SDC 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.

Creating an integrated national sepsis data trust will depend on a collaborative approach between all stakeholders, including but not limited to health care providers, insurers, researchers, patients, and government. SDC 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.

Please contact the SIC Program Director, Shion Chang, at schang@sepsis.org with any additional questions.