Inspire Report Details "SCAD Ladies" Patient Empowerment Story
(firmenpresse) - PRINCETON, NJ -- (Marketwire) -- 10/13/11 -- Several dozen women with a rare heart condition self-organized through a social network and shared stories about their medical conditions, trying desperately to find clinical answers. Those stories by patients compelled Mayo Clinic researchers to build upon the patient-initiated research and launch a study two months ago into the condition, known as spontaneous coronary artery dissection (SCAD).
Inspire has compiled first-person narratives in a new free 35-page report, .
"Looking back, I wasn't consciously saying to myself, 'Hey, we're using social media to organize a pool of study applicants,'" explained Laura Haywood-Cory of Durham, NC, one of the leaders of the patient-directed research. "I think I was more focused on the day-to-day, getting the word out, supporting the women who came forward and self-identified as SCAD survivors."
Haywood-Cory and Katherine Leon of Alexandria, VA, who spearheaded the effort on the , wrote detailed narratives for the report. They describe the process of how they united with other "SCAD ladies" to study the disease on their own, an effort that eventually led them to Mayo researchers.
The SCAD Ladies Stand Up features a foreword by Sharonne Hayes, MD, the Mayo Clinic cardiologist who is leading the project. "It is evident," Hayes wrote, "that social networking tools can catalyze community action and that the energy and commitment of affected patients can overcome inertia and ignite excitement and commitment to new research."
Brian Loew, CEO of Inspire, said the report "speaks to the power of patients sharing stories," and demonstrates the depth of engagement that takes place in online patient support communities.
Leon and Haywood-Cory are featured speakers in a keynote panel Tuesday, Oct. 18, at Mayo Clinic's Social Media Summit in Rochester, MN.
Princeton, NJ based creates safe, moderated online communities, organized by medical condition, for patients to share information and to support one another. Inspire builds and manages communities in exclusive partnership with more than 75 national patient advocacy and support organizations. Among the organizations are WomenHeart: The National Coalition for Women with Heart Disease, the National Osteoporosis Foundation, the National Psoriasis Foundation, the National Organization for Rare Disorders, and the Ovarian Cancer National Alliance.
CONTACT:
John Novack
Director of Communications
Inspire
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Datum: 13.10.2011 - 13:00 Uhr
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