Why It Matters

Why do we need a National Sepsis Data Trust?

Because we can’t manage what we don’t measure. Sepsis is an epidemic hiding in plain sight — and to fight an epidemic, scientists, researchers, and caregivers need to understand it.

Reliable and privacy-protected data about sepsis, collected at the national level and made available to all, would enable us to:

  • Improve time to diagnosis;
  • Understand which treatments lead to the best health outcomes;
  • Inform who is most at risk of sepsis and why;
  • Target our use of antibiotics and other antimicrobials, for more effective stewardship;
  • Identify disparities in access to care/services and focus equity initiatives;
  • Better understand SARS-CoV-2 and other new, existing, and novel infections and how they contribute to the onset of sepsis;
  • Innovate and deliver tools for better sepsis outcomes.

Why now?

1.7 million Americans are diagnosed with sepsis every year, and 270,000 of those Americans die – more than from prostate cancer, breast cancer, and opioid overdoses combined. Patients with sepsis are often readmitted to hospital within 90 days, have an increased risk of mortality for up to two years after a sepsis diagnosis, and many survivors live with lasting after-effects like amputations and PTSD.

COVID-19 causes many cases of viral sepsis; many COVID survivors are sepsis survivors. And both COVID and sepsis have a disproportionate impact on medically underserved communities. For all these reasons, it’s critical to create the essential foundation for a data-driven approach to sepsis prevention, diagnosis, treatment, and care.

Importantly, a number of organizations and agencies already collect, analyze, and/or report sepsis-related information. However, the data reside in many different places: in the servers of hospitals, insurers, labs, electronic medical record systems, and nursing homes. Because they are scattered, often inconsistent, and unconnected, we are limited in our ability to understand sepsis and improve sepsis care.

We need better sepsis data; data that is better organized, better integrated, and more useful to patients, providers, and researchers.

To accomplish this will take time. The National Sepsis Data Trust Initiative looks forward to working with all sepsis stakeholders to chart a path forward to create a National Sepsis Data Trust.

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