Every year in the United States, more than 1 million people are diagnosed with sepsis, and more than 250,000 people die of it. Sepsis can affect anyone of any age, socioeconomic status, or ethnic origin. Yet fewer than half of Americans have heard the word "sepsis," and it continues to be underdiagnosed in hospitals. Personal experiences with sepsis, both as clinicians and patients, motivated our group to apply to PCORI in the hope of funding the Sepsis Survivors Engagement Project—the first step in further understanding and improving the life experiences and health outcomes for the millions of survivors. At Tier I, we will develop capacity by convening monthly meetings for a small group of sepsis survivors, stakeholders, and researchers. We shall collectively develop communication tools to gather survivors' experiences during their hospital stays, and their quality of life after leaving the hospital.
As part of our group, Sepsis Alliance (www.sepsisalliance.org) will help develop and host an internet-based survey that will later query approximately 200 survivors and families. We will also create a web-based communication exchange forum to connect survivors, stakeholders, and researchers in exchanging ideas about the care of sepsis survivors. The survey and exchange forum will provide us with capacity to gather data, gain visibility for recruitment of more survivors and stakeholders to develop infrastructure (Tier II), and create a comparative effectiveness research proposal (Tier III), with the goal of defining interventions to improve the survivorship for patients living with the consequences of this life-threatening condition.