15 Facts About PatientsLikeMe

PatientsLikeMe is the world's largest integrated community, health management, and real-world data platform.

PatientsLikeMe was inspired by the life experiences of Stephen Heywood, diagnosed in 1998 at the age of 29 with amyotrophic lateral sclerosis, or Lou Gehrig's disease.

PatientsLikeMe was founded in 2004 by his brothers Jamie and Ben Heywood and long-time family friend Jeff Cole.

PatientsLikeMe was created to help patients connect with others who know firsthand what they are going through to share advice and resources.

In 2017, PatientsLikeMe entered into a partnership with iCarbonX to apply next generation biological measures and machine learning to understand more about the basis of human health and disease.

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In 2020, PatientsLikeMe began to operate as an independent company backed by Optum Ventures, a UnitedHealth Group affiliate.

PatientsLikeMe launched its first online community for ALS patients in 2006.

PatientsLikeMe's approach was to read the scientific literature and listen to patients to identify outcome measures, symptoms, and treatments that were important to patients and could be accurately reported.

PatientsLikeMe allows members to input real-world data on their conditions, treatment history, side effects, hospitalizations, symptoms, disease-specific functional scores, weight, mood, quality of life and more on an ongoing basis.

In 2015 PatientsLikeMe worked with researchers at Genentech on a study inviting potential clinical trial participants to review study protocols in order to provide input and feedback to make the study more appealing.

PatientsLikeMe has invited researchers to become embedded with the company such as an in-depth study explaining the organization of the platform and highlighting some of the challenges that social media and patient-centred research models are facing.

Wherever possible, PatientsLikeMe has a policy of publishing its research output in open access form, so that patients, clinicians, and researchers can easily access their scientific output.

PatientsLikeMe provides patients that take part in its studies with "givebacks" which concisely and rapidly give them feedback in lay language as to the results of research in which they have participated so they can understand how donating their data has been useful for research.

In 2008 PatientsLikeMe received the Prix Ars Electronica Award of Distinction and in March featured in a New York Times Magazine article entitled "Practicing Patients", by Thomas Goetz, who later went on to feature the site in his book "The Decision Tree".

In 2017, PatientsLikeMe was named by Fast Company as one of the Top 10 Most Innovative Companies in Biotech.