Social media is a powerful medium for reaching patients engaged in their health. It’s a vast new territory where brands and marketers can interact directly with patients to find out what they really want. Social media offers unprecedented access to patients actively participating in healthcare discussions online. However, social media can be complex and challenging to implement, especially in support of clinical trials, but it also holds tremendous, untapped promise.
This is backed up by a new study published by the Mayo Clinic. The study shows that social media can help researchers find patients with rare diseases who are candidates for clinical trials more quickly than conventional methods of recruitment.
Through patient-run websites dedicated to heart conditions and women’s heart health, a team of cardiologists led by Sharonne Hayes, M.D., is reaching out to survivors of spontaneous coronary artery dissection, also known as SCAD, a poorly understood heart condition that affects just a few thousand Americans every year.
Study recruitment through social media and online networks could help researchers assemble large and demographically diverse patient groups more quickly and inexpensively than they can using traditional outreach methods, according to the study, set for publication in the September issue of Mayo Clinic Proceedings.
“Patients with rare diseases tend to find one another and connect because they are searching for information and support,” says co-author Marysia Tweet, M.D. “Studies of rare diseases often are underfunded, and people with these conditions are quite motivated.”
A SCAD survivor inspired the pilot study. The woman approached Dr. Hayes asking how she could spur more research into the unusual condition. Dr. Hayes’ research team then asked the survivor to help recruit participants through an online support community on the website for WomenHeart: The National Coalition for Women with Heart Disease, the SCAD survivor and Dr. Hayes already were affiliated with the site. “This is a completely different research model than Mayo Clinic is used to,” Dr. Hayes says. “Investigators here typically rely on the stores of patient information from the clinic. This was truly patient-initiated research.”
The study landed 18 participants in less than a week, six more than could participate in this pilot of 12 patients. The remaining volunteers are eligible to participate in a new, larger study based on the initial study’s success.
The new research seeks patients through conventional and social media outlets and aims to build a virtual registry and DNA biobank of up to 400 SCAD survivors and their relatives. The database will help physicians conduct more detailed analyses of treatment strategies and factors that affect prognosis and better understand the possible genetic basis of some SCAD cases.
“Patient leadership in this is huge,” says study co-author Lee Aase, 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.”
The study clearly demonstrates the effectiveness of social media campaigns but it is important to remember that the starting point should begin with an understanding of the e-patient target, where to find them and how to best engage them. It is also important to track all efforts to ensure efficiency, and develop an action plan to address questions and concerns that may arise. Become part of their community, show support and offer insights when appropriate and provide a valuable service and offer a clinical trial opportunity they may not have discovered otherwise. Online health communities offer up a glimpse into the e-Patient’s world. Show sensitivity and respect, and in return the information and opportunities provided to e-Patients will be welcomed.