Sepsis Alliance Partners with Loma Linda University and Sepsis Survivors to Develop Survivors Engagement Research Project

Joint project between Loma Linda University, Sepsis Alliance, and sepsis survivors represents important first step in building a community interested in promoting sepsis research

SAN DIEGO, CA (March 13, 2014) – Loma Linda University, sepsis survivor Kim Pickinpaugh, and Sepsis Alliance have partnered to create the Sepsis Survivors Engagement Project (SSEP), which has been approved for a “Pipeline to Proposal” funding award by the Patient-Centered Outcomes Research Institute (PCORI).

The SSEP, which will be headed by H. Bryant Nguyen, MD, MS, Director of Loma Linda University Center for Comparative Effectiveness and Outcomes Research (LLU-CCOR), will focus on building a community interested in promoting research on sepsis, including post-sepsis syndrome, the physical and long-term effects of sepsis and intensive care unit (ICU) hospitalization.

Through SSEP, researchers at Loma Linda University, sepsis survivors, and Sepsis Alliance will engage other sepsis survivors and family members in developing a survey on key survivor concerns that span from the time of diagnosis to their day-to-day activities after surviving sepsis. This patient-engaged survey will then be hosted online and accessed through the Sepsis Alliance website.

“This is an important step in the future of patient-driven sepsis care,” noted James O’Brien, MD, MSc, Chair of Sepsis Alliance’s Board of Directors. “Thanks to the commitment of sepsis survivors and Loma Linda University, as well as the generosity of PCORI to seed this project, we will be able to have a significant impact in the way doctors and patients interface and promote sepsis research.”

“This project is a great start for our partnership with sepsis survivors,” added Azmina Ghelani, MPH, Center Administrator for LLU-CCOR. “SSEP will change the way we do research by directly involving the patient and having investigators, stakeholders, and patients work together to develop and tackle research questions.”  Already, the SSEP team has recruited additional sepsis survivors, Jackie Edgett and Angie Lembo.

The SSEP will help build relationships with other individuals and groups interested in sepsis and post-sepsis syndrome. SSEP will also develop governance and guidance structures, such as an advisory council and strategic plan, for the budding sepsis and post-sepsis syndrome community.

Funding for SSEP is provided by PCORI an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI has awarded a total of $464.4 million since it began funding patient-centered comparative effectiveness research in 2012, and hopes these foundational steps will eventually lead to topics and proposals for comparative effectiveness research studies.

SSEP is one of 30 proposals approved for these seed funds intended to build communities interested in advancing patient- and stakeholder-driven health research. The award is among the first to be made through PCORI’s new Eugene Washington PCORI Engagement Awards program. These Tier I Pipeline to Proposal awards provide seed funds to encourage the development of partnerships and research project ideas among individuals and groups who want to take an active role in health research but may not have opportunities to do so. SSEP and the other projects were selected by review panels made up of patients, stakeholders, and researchers.

About Sepsis Alliance

Sepsis Alliance is a nonprofit patient advocacy organization in the U.S. promoting awareness of sepsis. Sepsis Alliance operates by providing information and education to raise awareness of sepsis and its devastating effects. Sepsis Alliance also provides support by giving people affected by sepsis a forum to share information. Sepsis Alliance was founded by Dr. Carl Flatley after the loss of his 23 year-old daughter, Erin, to sepsis. Her death in 2002 spurred Dr. Flatley to start an organization that would promote awareness of sepsis to both medical professionals and patients. Sepsis Alliance is registered as a 501(c)(3) charitable organization, and is a founding member of the Global Sepsis Alliance. For more information on Sepsis Alliance, please visit www.sepsisalliance.org.