Data from Patient Social Network Refutes Lithium for ALS – MIT Technology Review (blog)

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Published: April 26, 2011

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It provides users with tools to track their health status and communicate with other patients, and then removes the personal details and sells the data to pharmaceutical companies and others. PatientsLikeMe put its database to the test in 2008, after a small Italian study published in Proceedings of the National Academy of Sciences suggested that lithium could delay the progression of ALS. Inspired by a member in Brazil who wanted to know if lithium was truly helping, the company rolled out a number of tools to allow patients to track their progress. Unlike a typical clinical trial, this allowed scientists to search for unique characteristics in the people who decided to take the drug. To address the concern, PatientsLikeMe developed an algorithm that matched 149 patients taking lithium with at least one other ALS patient on the site who didn’t take the drug. Merit Cudkowicz, an ALS researcher at Harvard Medical School who was an investigator on a standard lithium clinical trial, said social network-generated data can offer valuable insights, but she cautioned that the PatientsLikeMe study was not a substitute for more rigorous studies. click here to read more

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