PatientsLikeMe was born out of frustration. When Stephen Heywood was diagnosed with ALS in 1998 at the age of 29, his brothers Jamie and Ben tried to treat his symptoms and slow his disease as it progressed. But finding information to guide their decisions was time-consuming and difficult.
The Heywood brothers: Jamie, Ben and Stephen, who was diagnosed with ALS at the age of 29
Jamie and Ben, along with family friend Jeff Cole, initially launched PatientsLikeMe in 2006 to connect ALS patients, but it quickly expanded, and in 2011, they opened the website to all patients and all conditions. Today, 500,000 people use PatientsLikeMe to report on their experience with 2,700 conditions. It's a place where members can find answers to the same questions Stephen had: "Is what I'm experiencing normal?" "Is there is anyone out there like me?" They can share about their condition in their own voice. And they can learn, connect with others, and track their progress, symptoms and treatments.
Partnering with empowered patients to drive patient centered care
PatientsLikeMe members are helping to fundamentally transform the world's understanding of disease by sharing their real-world experiences. They've generated 38 million data points about disease — creating one of the largest repositories of patient-reported, cross-condition data available today, and helping the healthcare industry better understand the patient experience.
Inspired by Stephen and founded on a philosophy of openness, PatientsLikeMe's mission is to work with with biopharma companies, providers, payers and other healthcare stakeholders to improve the lives of patients through new knowledge derived from shared real-world experiences and outcomes.