PatientsLikeMe is about using community tools to force new and productive collaborations between patients, healthcare providers, advocacy groups and intervention developers, to serve a patient-driven agenda of living beyond the boundaries traditionally associated with chronic illness and disease. By combining data with social functionality, the site provides patients and researchers with tools to rapidly carry out inquiries. Patients learn about the factors that impact on their health status over time, locate others like themselves, consult a trusted community within which to exchange advice, sympathy and insight, and have tools to research and compare new treatment strategies. Two years after launch, PatientsLikeMe has over 10,000 verified members, including patients, caregivers, researchers and healthcare professionals.

In PatientsLikeMe, each community is built for a particular disease based on a nuanced and personal understanding of the condition. The first PatientsLikeMe community was built for patients with amyotrophic lateral sclerosis (ALS / MND), which is an incurable and fatal neurological disease. PatientsLikeMe online community members create knowledge about effective treatment of serious illnesses by sharing intimate details of their biological, physical and emotional experience of disease. Patients contribute structured data about their symptoms, treatments, tests and health status. This information is reflected back to community members in coherent graphic displays as individual-level health profiles and community-level reports on symptoms, treatments and outcomes. These data displays are the focal points for discussion in a public forum, within a specific patient’s profile or in private messaging between patients. Referencing data content, patients discuss treatment effectiveness and how to moderate side effects, or they can look at one another’s profiles and offer words of encouragement, support and advice. Health profiles, community-level reports and user discussions are dynamically linked (www.patientslikeme.com/treatments/show/777) to introduce data into the conversation and signal the health status, history and credibility of the author.

In 1999, at the age of 29, Stephen Heywood was diagnosed with the terminal muscle-wasting disease ALS. Inspired by Stephen's experiences with the disease, his brothers Ben and Jamie Heywood, along with family friend Jeff Cole, designed an online community for patients, doctors and organizations that inspires, informs and empowers individuals. PatientsLikeMe is now a team effort built through the collaboration of its 15-plus members.