“We Can’t Manage What We Don’t Measure”: Sepsis Alliance Continues to Push for Better Sepsis Data Collection

The National Sepsis Data Trust Initiative (NSDTI) is a new initiative that will continue Sepsis Alliance’s ongoing advocacy efforts to improve sepsis data collection and availability. Its goal is the creation of a National Sepsis Data Trust—a hub of centralized information critical to improving sepsis care.

SAN DIEGO, CALIFORNIA—Sepsis Alliance, the nation’s first and leading sepsis organization, is excited to announce the National Sepsis Data Trust Initiative (NSDTI), a continuation of its ongoing advocacy efforts to improve sepsis data collection and availability. This independent, consensus-driven, multi-stakeholder initiative aims to create a National Sepsis Data Trust, a hub of sepsis-relevant clinical and claims information available to all at the national level. Such a collection of data will help researchers, patients, innovators, and caregivers to better understand sepsis, and therefore to improve its diagnosis and treatment.

Sepsis, the body’s overwhelming and life-threatening response to an infection, constitutes a hidden epidemic in the U.S.: 1.7 million Americans are diagnosed with sepsis every year, and more than 270,000 of those Americans die – more than from prostate cancer, breast cancer, and opioid overdoses combined. Sepsis is the leading cause of death in U.S. hospitals and is responsible for approximately $62 billion in hospitalization and skilled nursing costs annually. Many sepsis survivors live with lasting after-effects, which can include amputations (14,000 per year) and Post-Traumatic Stress Disorder (PTSD). And these burdens are not felt equally: older adults, young children, immunocompromised people, and Americans in medically underserved communities (including Americans of color and individuals experiencing poverty) experience heightened risk of developing sepsis and, on average, worse patient outcomes.

What’s more, healthcare providers face enormous challenges in diagnosing and treating sepsis, which remains critically under-examined. In a 2020 STAT op-ed, Sepsis Alliance clinical contributor Rommie Duckworth, Senior Medical Advisor Steven Simpson, and Board of Directors Chair Karin Molander argue that to manage a hidden epidemic, “the first step is to gather and analyze reliable and consistent data on who gets sepsis, what treatments work, and how best to support survivors and their families.” In their estimation, it is impossible to manage such a large-scale problem without measuring it.

In 1992, the Centers for Disease Control and Prevention’s National Program of Cancer Registries (NPCR) began collecting cancer-relevant data from across the country. Along with other factors, the connected data on cancer contained in the NPCR have contributed to impressive progress in cancer patient outcomes. Still today, no such infrastructure exists for reporting, tracking, or sharing sepsis-related information at the national level. It is this missing piece that Sepsis Alliance’s initiative seeks to address.

NSDTI’s end goal is a readily available nationwide trust comprised of anonymized, patient-specific, longitudinal, all-site-of-care data. Such a data trust has the potential to:

• Improve time to sepsis diagnosis;
• Illuminate which treatments lead to the best health outcomes;
• Inform who is most at risk of sepsis and why;
• Identify inequitable disparities in care and outcomes;
• Help us better understand novel infections like COVID-19 and how they contribute to the onset of sepsis;
• Allow innovators to deliver tools for better sepsis outcomes.

A trust can also promote antimicrobial stewardship by equipping innovators with the data essential to developing better drugs and providing physicians with most comprehensive guidance on what works best for a given sepsis patient. This kind of information is essential for enabling better diagnosis, outcomes, equity, innovation, and quality of care for patients with sepsis, saving lives and limbs.

Sepsis Alliance has been prioritizing the pursuit of improved sepsis data collection and availability for several years. In 2020, the organization created the National Sepsis Registry Initiative (NSRI), which sought to create a national registry of sepsis data modeled on the NPCR. However, after careful consideration, Sepsis Alliance determined a data trust model, rather than a registry model, to be the optimal path forward for its purposes. Although the format and governance will look slightly different, the end goal remains the same: making anonymized, patient-specific, longitudinal, all-site-of-care sepsis data available at the national level. Today, the National Sepsis Registry Initiative is officially replaced by the National Sepsis Data Trust Initiative, a continuation of Sepsis Alliance’s ongoing advocacy efforts in the data collection space.

NSDTI will pursue pilot programs, promote legislation, and engage stakeholders in the creation, implementation, and use of a sepsis data trust. For further information about this work, please visit www.SepsisDataTrust.org

About Sepsis Alliance

Sepsis Alliance, the first and leading sepsis organization in the U.S., seeks to save lives and reduce suffering by improving sepsis awareness and care. More than 1.7 million people are diagnosed with sepsis each year in the U.S. with more than 270,000 dying and over 50% of survivors experiencing post-sepsis syndrome and other lingering effects, including amputations. At Sepsis Alliance’s founding in 2003, only 19% of U.S. adults were aware of the term “sepsis.” After over ten years of educational efforts for the general public and healthcare providers through Sepsis.org, Sepsis Alliance Clinical Community, Sepsis Alliance Institute, and Sepsis Alliance Voices, awareness is at 65% with over 30,000 healthcare providers across the country having attended sepsis webinars and courses to elevate their practice and over 28 Sepsis Awareness Month state proclamations. Sepsis Alliance is a 501(c)3 nonprofit and a GuideStar Platinum Rated charity. For more information, please visit www.sepsis.org and connect with Sepsis Alliance on Facebook, Twitter, Instagram, and LinkedIn at @SepsisAlliance.