Non-profit medical research organization Mayo Clinic took a new approach recently when recruiting participants for a study on spontaneous coronary artery dissection (SCAD) by utilizing social networks and social media.
A team of the Clinic's cardiologists, led by Dr. Sharonne Hayes, pinpointed patient-run websites dedicated to heart conditions in order to recruit survivors of SCAD, a heart condition which affects fewer than 200,000 Americans each year. By implementing a novel network of recruitment, researchers were able to assemble “large and demographically diverse patient groups more quickly and inexpensively than they can using traditional outreach methods,” according to the study, which will be published in the September issue of Mayo Clinic Proceedings.
The pilot study was originally sparked by a SCAD survivor named Katherine Leon, who is also a member of the online support community WomenHeart: The National Coalition for Women with Heart Disease. Leon, who was treated for SCAD in 2003, reached out to Dr. Hayes directly to find out what sort of research options were possible to investigate SCAD further, given that patients were so in the dark about the rare affliction. Dr. Hayes and her research team subsequently asked Leon to help them recruit SCAD participants through her heart disease network, and the study landed 18 participants in less than one week, six more patients than were eligible to participate in the 12-person pilot, according to a release.
“This is a completely different research model than Mayo Clinic is used to,” commented Dr. Hayes on the patient recruitment method. “Investigators here typically rely on the stores of patient information from the clinic. This was truly patient-initiated research.”
The Clinic's aim now is to build up a database of SCAD survivors and their relatives through both typical research and social media channels to allow physicians to perform detailed analyses of treatment strategies. Based upon the success of the initial study, Dr. Hayes and her team will open participation to a larger group of SCAD patient volunteers.
“Patient leadership in this is huge,” says Lee Aase, co-author of the study and director of Mayo Clinic's Center for Social Media. “Designing research protocols to study rare diseases and then recruiting enough patients to participate is extremely difficult for busy physicians, but patients with rare diseases are highly motivated to see research happen.”