Communications of the ACM
Social Network Could Revolutionize Disease Treatment
PatientsLikeMe's 200,000 members share information related to the chronic diseases from which they suffer, with each other and with medical researchers.
Credit: TED/Flickr
The social network PatientsLikeMe plans to build an open science platform that would aid users in measuring the progression of their diseases and sharing the data with medical researchers. Designed for people suffering from chronic diseases, PatientsLikeMe has about 200,000 members, and they use the service to create and share their medical records, often using standardized questionnaires or tests they conducted themselves.
PatientsLikeMe research director Paul Wicks and colleagues are interested in tools for developing standardized measurements for additional diseases, tools to evaluate and refine those measurements, and mechanisms for licensing the data and for open-sourcing the measurements used to collect the data under a Creative Commons license.
Only a few hundred diseases out of thousands have measurement systems developed for patient use, Wicks notes. "We're going to be able to understand these diseases and learn about them--not for curiosity, not for publication, or for profit, but to take them apart one by one, and consign them to the history books," he says.
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