PatientsLikeMe isn’t like any other social media site

 

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If you don’t know them, you should,PatientsLikeMe. Unlike most social media sites, this one isn’t so much about “chatting” with patients like you as much as learning the real-life health experiences of others by seeing shared treatment plans, meds and symptoms. 

Last week PatientsLikeMe expanded its platform and, while diabetes wasn’t previously represented, now anyone with any condition can join. The site is free and 5 years in the social media space, has almost 100,000 members and represents 500 conditions.

What’s the benefit to joining? In addition to feeling less alone, it’s seeing how others are treating your same condition, how they’re doing and learning what does and does not work for others.

PatientsLikeMe was founded by three MIT engineers, brothers Benjamin and James Heywood and friend Jeff Cole after Stephen Heywood, brother and friend, was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. As the founders describe it, we believe we have a health data-sharing platform that can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.

Surprisingly, or maybe not so, its members, who are very open in what they post on the site, revealed in apoll conducted by PatientsLikeMe  that 29% have withheld certain health information from their doctor for fear of being lectured or made to feel bad. 47% have chosen not to share certain health information with their employer for fear of losing their job or being passed over for promotion, and 14% have withheld information from insurance companies for fear of not having a procedure covered.

It is the hope of its founders that PatientsLikeMe will help patients help themselves by sharing their real-world health experiences in a world where patients are obviously afraid to share certain things with their health care providers.

 

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