What self-respecting health on the internet fan doesn't know PatientsLikeMe the site that enables English-speaking patients to create their online profile, generate dynamic graphic representations of their data and-- most important of all, meet up with people "like them"? For many, myself included, PatientsLikeMe is the icon of the Health 2.0 movement. Two new changes to PatientsLikeMe rules inspired this blogpost 1) the PatientsLikeMe site will henceforth apply the principle of cooptation. A member can invite another patient, whatever his or her condition 2) a patient can create a new condition, if one is lacking. People with multiple conditions will be able to follow all of them on PLM.
A final but important question at this time: Why does PatientsLikeMe (with its 80k patient database) represent such a small fraction of the English-speaking internet health-concerned population? If it's the narrow selection of diseases, that may change with the new rules. But, what if the reason comes from the fact that not everyone wants to create and follow their profile and meet with others? To create and manage a detailed online file is work and revealing of one's vulnerabilities whether as an avatar or visibly. As everyone in the field of EHR's knows, not enough individuals are committed to creating one...
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