On Friday, March 21, the NIH Collaboratory and PCORnet Grand Rounds featured a presentation on “The Use of Social Media in Clinical Research” by Stephanie Startz, Associate Director of Digital Strategy for the Michael J. Fox Foundation. The Fox Foundation is a patient-focused nonprofit organization dedicated to finding a cure for Parkinson disease.
In December 2013, the Fox Foundation hosted a Twitter chat (#FoxChat) about challenges in clinical trial recruitment. The foundation’s blog notes that the discussion involved more than 90 participants and more than 600 tweets, making it one of Twitter’s hottest topics during that time. The Twitter chat, a full transcript of which is available online, engaged a diverse audience that included researchers, nonprofit organizations, patients, and patient advocacy groups, demonstrating that the Twitter chat format has the potential to elicit dialogue among these groups.
Ms Startz described the Fox Foundation’s other social media efforts on Facebook, Instagram, YouTube, etc, which have been successful in engaging the patient community and encouraging participation in clinical research. For example, a 3-day campaign on Facebook led to more than 1800 visitors to the Fox Trial Finder website. Advice for engaging patients via social media included being social by sharing stories and videos (not just requests for action), avoiding jargon, and responding to users. The Fox Foundation shares firsthand patient experiences, gives updates on trials, and thanks participants using social media. The Grand Rounds discussion covered issues of privacy and the extent to which social media could potentially play a role in involving patients in research design, not just research participation.