Case Study: Using Social Media to Support Rare Disease Research

  posted by admin 20 August 2011

There is an enormous struggle to leverage the strengths of social media in the health care space. This challenge is widely discussed in the media as pharma companies seek clear guidelines from regulatory agencies. Regardless, the massive potential to use social media and community efforts to support pharmaceutical and disease research is real and patients and the medical community are slowly edging towards programs that work without violating regulation. Driving the success is a real demand, on one side, are the patients and communities of those suffering from diseases who desperately, and actively, seek information and discussion. On the other side are the foundations and pharma companies who are actively trying to locate people suffering from these diseases in order to get them to participate in the clinical research critical to advancing cures.

The Michael J. Fox Foundation for Parkinson’s Research recently launched the Fox Trial Finder project to help Parkinson’s patients find clinical trials in their area. Only 1 in 10 Parkinson’s patients currently participates in the trial which are so vital to finding a cure. ICON developed the social media platforms which provided a foundation for spreading the word.

The effort provides one example of a model which can have success, and demonstrates the huge potential of social media in this field when executed with a clear strategy and objective. Within one month of launch over 500 new clinical trial participants were signed up. The story was spread and followed by over 45,000 FaceBook Fans and 4,500 Twitter followers:
Fox Foundation Case