PatientsLikeMe and the tale of three brothers

People power and social networking tools for patients

In 2004, Ben and Jamie Heywood launched a social networking site called PatientsLikeMe (PLM) (http://www.patientslikeme.com). They were motivated by their younger brother Stephen’s tragic journey with amyotrophic lateral sclerosis (ALS) and the desire to connect and share information with other ALS sufferers. Members of the PLM community create a profile to record and track their health over time, including quality of life, symptom control, and treatments and their efficacy and side effects. Members can also connect through online discussion, and the site has over 110 000 members with a counter on the homepage rising every few minutes. From April 2011, the site has opened up to all health conditions, after initially focusing on a few neurological disorders, such as ALS, multiple sclerosis and Parkinson disease. The savvy developers have produced an appealing Web 2.0 interface and the site links to other online platforms such as Facebook, Twitter, YouTube, blogs and free podcasts on iTunes. PLM’s stated aim is to help patients answer the question, “Given my status, what is the best outcome I can hope to achieve and how do I get there?”.1