WASHINGTON – U.S. Senators Bill Cassidy, M.D. (R-LA) and Bob Casey (D-PA), members of the Senate Health, Education, Labor and Pensions Committee, today introduced the Sepsis Data Trust, Outcomes, and Innovation Act. This bipartisan bill would create a voluntary, privacy-protected sepsis data trust to collect information related to sepsis—the body’s overwhelming and life-threatening response to infection—and track the spread of infection-causing strains. This information will then be used to improve treatment and clinical coordination of patient care.
“Information sharing is central to the success of recent cancer research. That same approach is needed for sepsis,” said Dr. Cassidy. “Our bill bridges gaps in sepsis treatment in hopes to save more lives.”
“The more we know about sepsis infections, the more we can prevent future tragedy. This bill would provide much-needed data, improve patient care and save lives,” said Senator Casey.
“The establishment of a national sepsis data trust and the authorization of state-based sepsis pilot programs will give researchers, innovators, clinicians, and public health officials critical insight into a condition that is responsible for 350,000 deaths in the U.S. each year,” said Thomas Heymann, President and CEO of Sepsis Alliance. “We know from existing data repositories, such as the National Program of Cancer Registries, that better information about how a condition progresses, who is most affected, and what treatments are working strengthens our ability to protect our communities. We are eager to see this bill made law in order to help us save lives and limbs from sepsis.”
Currently, Louisiana reports the highest death rate for sepsis in the U.S.
The bill would allow the U.S. Secretary of Health and Human Services to establish a national sepsis data trust and fund state-based pilots and programs. The sepsis data trust would be a voluntary system to aggregate data on different strains of bacteria that contribute to the pathology of sepsis and the analysis of the genetic factors that contribute to the risk of having sepsis.
All patient data in the trust will be anonymous, deidentified, and privacy-protected.
This bill is the first proposal to establish an interoperable sepsis data trust to allow hospitals and medical research centers to work together and improve disease outcomes.