PatientsLikeMe

Webplatform to connect with other patients

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US United States
Web http://www.patientslikeme.com/
Maturity

Mature

About the project Edit

PatientsLikeMe is a social networking health site that enables its members to share treatment and symptom information in order to track and to learn from real-world outcomes. All data are anonymized to be shared throughout the web community, medical researchers and drug developers. The site was initially launched in 2005 when brothers James Heywood and Benjamin Heywood recognized the need for community-based information sharing around specific diseases when their brother Stephen Heywood was diagnosed with ALS in 1998. At October 2009, there were 45,000 registered patients on the site.

PatientsLikeMe currently has communities for amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), Parkinson's disease, fibromyalgia, HIV, chronic fatigue syndrome, and mood disorders, as well as the rare conditions progressive supranuclear palsy, multiple system atrophy, and Devic's disease (neuromyelitis optica). In June 2009 PatientsLikeMe announced their first major partnership with the drug company UCB to develop a community for patients suffering from epilepsy, due for launch in early 2010. Users of the site access the site for free. However the site is a commercial site as it aims to sell its users' data to drug and medical companies.

In what ways is this project unique and creative? Edit

PatientsLikeMe is the first open source healthcare system. It uses the MySpace mindset to boost medical science. The company was named as one of the "15 Companies that Will Change the World" by Business 2.0 and CNN Money.

What is the social value of this project? Edit

PatientsLikeMe enables patients who suffer from these life-changing diseases to converse with one another, allowing them to share data on improving their outcomes, empathize with each other and to learn any techniques or medication other sufferers are trying in order to improve their health. Individual records can be sorted and pooled into data sets that can be crunched for insights on a wide range of conditions, treatments and outcomes. Patients can then use the collective wisdom to research other ailments, investigate different treatments, and work with their doctors to improve their health. Indeed, with a scarcity of data, there is no clear way for physicians to know what treatments are working for other practitioners.

Despite its success, PatientsLikeMe have found various detractors. Hospitals and physicians are still opposed to the concept. Faced with criticism based on allegation of risks of employers' discrimination towards workers with disease, advocates of this imaginative solution argue that tens of thousands of lives could be saved should health data circulate freely, versus a minority of job discrimination cases.

What is the potential of this project to expand and develop? Edit

What was the triggering factor of this project? Edit

What is the business model of this project? Edit

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