Leading Preeclampsia Advocates Partner to Launch New Educational Resources
MELBOURNE, Fla., Jan. 9, 2024 /PRNewswire/ — Today, the Preeclampsia Foundation (PF) and the Society for Maternal-Fetal Medicine (SMFM) unveiled a new “Make Preeclampsia History” patient experience visualization tool.
Preeclampsia, a life-threatening hypertensive disorder of pregnancy that is a leading cause of maternal illness and death, was the focus of the 2021 SMFM President’s Workshop, which was led by Dr. Judette Louis in partnership with the Preeclampsia Foundation. In addition to talking about the state of preeclampsia research and clinical care practices, the workshop integrated lived patient experiences through a series of four videos featuring the voices of real patients.
From that workshop, three joint SMFM and PF task forces were convened to explore various ways to move preeclampsia research and healthcare practices forward – with the involvement of patients at the center. One of these work groups, led by Jacqueline Parchem, MD, of UTHealth Houston, focused on understanding research priorities.
“We did a ton of brainstorming about how to really transform research and improve the way that preeclampsia is diagnosed, treated, and managed,” said Dr. Parchem. “Our team proposed that we launch a social media campaign to curate feedback from the patients, researchers, and clinicians who have a stake in changing preeclampsia outcomes.”
In March 2022 for Women’s History Month, the work group launched a social media campaign called #MakePreeclampsiaHistory. The campaign asked providers and patients provocative questions about the state of preeclampsia research and care practices to generate discussion.
One of the questions posted via social media during the campaign asked patients: “What do you wish your doctor or OB told you about preeclampsia?” The patient community’s answers were powerful – so powerful that Dr. Parchem and the work group knew the output had to be something innovative.
“As a patient advocacy organization, the Foundation’s team often reflects that patients are the only ones always in the room where care is experienced,” said Preeclampsia Foundation Director of Communications Laney Poye. “The community responses that our teams received to this specific social media question reflected the fears and uncertainties, but also triumphs, that patients felt during their preeclampsia experience.”
The work group contracted with artist Ashanti Gardner, a visual practitioner and design thinker, who is known for her ability to capture and sketch complex ideas and narratives through visual storytelling. She created a vision of these patient statements that reflected the complexity of what preeclampsia patients wish they had known. Ashanti also visualized answers from patients about what they experience in terms of signs and symptoms of preeclampsia.
The goal of the workgroup was to create resources that captured the voices of patients in a visual way that could be shared with patients, clinicians, and researchers alike. The public is encouraged to share the graphics on their own social media channels as a tool to educate others about preeclampsia and the patient experience.
About the Preeclampsia Foundation
The Preeclampsia Foundation is a U.S.-based 501(c)(3) non-profit organization established in 2000 to improve the outcomes of hypertensive disorders of pregnancy by educating, supporting, and engaging the community, improving healthcare practices, and finding a cure. We envision a world where preeclampsia and related hypertensive disorders of pregnancy no longer threaten the lives of mothers and babies. For more information, visit www.preeclampsia.org.
The Society for Maternal-Fetal Medicine (SMFM), founded in 1977, is the medical professional society for maternal-fetal medicine subspecialists, who are obstetricians with additional training in high-risk pregnancies. SMFM represents more than 6,000 members who care for high-risk pregnant people and provides education, promotes research, and engages in advocacy to advance optimal and equitable perinatal outcomes for all people who desire and experience pregnancy. For more information, visit SMFM.org.
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SOURCE Preeclampsia Foundation