Have questions about Sepsis Alliance advocacy? Get started here.
Have questions about Sepsis Alliance advocacy? Get started here.
“Advocacy” refers to a range of activities that can impact policies, laws, or regulations at local, state, or national levels. These activities may include meeting with community leaders, asking elected officials to take action on pieces of legislation, or educating the public on important issues.
Sepsis advocates help improve care and quality of life for millions of people affected by sepsis. They support legislation, policies, and regulations that can make a difference for patients with sepsis, survivors, and their loved ones. Examples may include laws that create better support systems for sepsis survivors, proclamations that officially recognize sepsis awareness observances to help raise general sepsis awareness, and regulations that enable the collection of better sepsis-relevant data.
Anyone can be an advocate! If you are willing to use your voice, you can be a part of sparking change.
Advocacy can take many forms. Signing petitions, calling or emailing community leaders or decision-making agencies, and meeting with legislators are all examples of ways to advocate for issues of importance to those impacted by sepsis. Advocacy can also include community work like public education campaigns, events to engage your neighbors, and relationship-building with other advocates working on related issues.
Another important part of advocacy is personal storytelling. If you have a personal experience with sepsis, sharing that experience with your community or with decision-makers can help to put a real face to this important issue, which can motivate change.
Hoping to share your sepsis experience? Email info@sepsis.org or submit your story to Faces of Sepsis™, a space for those affected by sepsis to share their experiences of illness, treatment, recovery, and loss.
A data trust is an anonymized, readily available collection of data about a group of patients with a shared condition or experience. It’s a hub of information that can help experts better understand a condition like sepsis. The better sepsis is understood, the more we can improve its diagnosis and treatment.
There is currently no central hub for sepsis-related information, like there is for cancer. Sepsis Alliance supports the creation of a national sepsis data trust because it would likely give us answers to fundamental questions about sepsis, like:
We can’t manage what we don’t measure. For more information about Sepsis Alliance’s data work, please visit SepsisInnovation.org.
“Lulu’s Law” is the shorthand name for the National Sepsis Data Trust, Research, Outcomes, and Innovation Act. It is a bipartisan, bicameral piece of proposed legislation that has recently been introduced in Congress.
Lulu’s Law would authorize the establishment of a national sepsis data trust to be housed within the Department of Health and Human Services. It would also allow states to launch sepsis data pilot programs to eventually feed into the trust.
Lulu’s Law is a major step towards Sepsis Alliance’s goal of collecting robust sepsis information in a central and anonymous database. You can get involved by contacting your Congressional representatives here.
For more information on Lulu’s Law, contact Kristin DeVries, Sepsis Alliance’s Director of Policy and Advocacy: kdevries@sepsis.org.
