{"id":15825,"date":"2014-01-13T15:38:16","date_gmt":"2014-01-13T20:38:16","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=15825"},"modified":"2014-01-14T08:01:42","modified_gmt":"2014-01-14T13:01:42","slug":"husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html","title":{"rendered":"Husband-wife pieces in NY Times and The Guardian break ethics and lack a clue (re @AdamsLisa)"},"content":{"rendered":"
Update 9:20 pm ET: see important additions at the subhead below. When I wrote this today I didn’t have time to dig for excellent links like those. Thanks to Susannah Fox’s Twitter feed.<\/em><\/p>\n One of the best social media patient figures I met, long ago, was @AdamsLisa<\/a> – Lisa Bonchek Adams of LisaBAdams.com<\/a>.\u00a0There’s a firestorm today in the SPM member listserv and on social media over a pair of pieces that are in my view incredibly offensive and clueless, utterly missing the point of the value of social media. I find this patently offensive, and apparently there’s more to it than that – writer Emma Keller didn’t tell Lisa she was working on a story, published private emails and DM’s from Lisa without asking, and\u00a0didn’t even tell her the piece had been published.<\/em> What the heck??<\/p>\n And yet the headline of her piece questioned\u00a0Lisa’s\u00a0<\/em>ethics in tweeting her own illness!<\/p>\n Here are some initial readings:<\/p>\n I’ve gotta run – please discuss. Help the clueless understand – what were they missing?<\/p>\n As usual, Susannah Fox’s contribution amid the heat is to shed light where she can, with some facts. First,\u00a0go read these articles. They’ll deepen your understanding of the story and clarify why it feels so wrong.<\/p>\n Other tweets from Susannah’s timeline shed light on reality:<\/p>\n\n
<\/a>Today, apparently after this blew up, The Guardian took the unusual step of withdrawing Emma Keller’s post (right). Others are saying it was removed due to issues with the Guardian’s code of conduct … an ethics bust, on a post that questioned the patient’s ethics.<\/p>\n
Additions 9:20 pm<\/em><\/h3>\n
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Added 7 a.m. next day<\/em><\/h2>\n