{"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":"<p><em>Update 9:20 pm ET: see important additions at the subhead below. When I wrote this today I didn&#8217;t have time to dig for excellent links like those. Thanks to Susannah Fox&#8217;s Twitter feed.<\/em><\/p>\n<p>One of the best social media patient figures I met, long ago, was <a href=\"http:\/\/twitter.com\/AdamsLisa\" target=\"_blank\">@AdamsLisa<\/a> &#8211; Lisa Bonchek Adams of <a href=\"http:\/\/LisaBAdams.com\" target=\"_blank\">LisaBAdams.com<\/a>.\u00a0There&#8217;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&#8217;s more to it than that &#8211; writer Emma Keller didn&#8217;t tell Lisa she was working on a story, published private emails and DM&#8217;s from Lisa without asking, and\u00a0<em>didn&#8217;t even tell her the piece had been published.<\/em> What the heck??<\/p>\n<p>And yet the headline of her piece questioned\u00a0<em>Lisa&#8217;s\u00a0<\/em>ethics in tweeting her own illness!<\/p>\n<p><!--more-->Here are some initial readings:<\/p>\n<ul>\n<li>@EmmaGKeller&#8217;s initial post has been deleted. It&#8217;s archived <a href=\"http:\/\/t.co\/k5Za2NItdN\" target=\"_blank\">here<\/a>.<\/li>\n<li><a href=\"http:\/\/www.nytimes.com\/2014\/01\/13\/opinion\/keller-heroic-measures.html?_r=0\" target=\"_blank\">NY Times op-ed today<\/a> by @NYTKeller, her husband Bill Keller, former Executive Editor of the Times.<\/li>\n<li><a href=\"http:\/\/www.huffingtonpost.com\/2014\/01\/13\/bill-keller-cancer-victim-op-ed_n_4588454.html\" target=\"_blank\">The Huffington Post&#8217;s great recap<\/a>\u00a0today of the situation, including screen grabs of many of Lisa&#8217;s tweets<\/li>\n<\/ul>\n<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2014\/01\/Guardian-on-Lisa-Adams.png\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-15826 alignright\" alt=\"Guardian post on Lisa Adams - takedown\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2014\/01\/Guardian-on-Lisa-Adams-300x191.png\" width=\"300\" height=\"191\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2014\/01\/Guardian-on-Lisa-Adams-300x191.png 300w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2014\/01\/Guardian-on-Lisa-Adams.png 572w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a>Today, apparently after this blew up, The Guardian took the unusual step of withdrawing Emma Keller&#8217;s post (right). Others are saying it was removed due to issues with the Guardian&#8217;s code of conduct &#8230; an ethics bust, on a post that questioned the patient&#8217;s ethics.<\/p>\n<p>I&#8217;ve gotta run &#8211; please discuss. Help the clueless understand &#8211; what were they missing?<\/p>\n<h3><em>Additions 9:20 pm<\/em><\/h3>\n<p>As usual, Susannah Fox&#8217;s contribution amid the heat is to shed light where she can, with some facts. First,\u00a0go read these articles. They&#8217;ll deepen your understanding of the story and clarify why it feels so wrong.<\/p>\n<ul>\n<li>@megangarber&#8217;s piece in<em>\u00a0The Atlantic<\/em>,\u00a0<a href=\"http:\/\/t.co\/XjtL0e22gz\" target=\"_blank\">On Live-Tweeting One&#8217;s Suffering<\/a><\/li>\n<\/ul>\n<ul>\n<li><a href=\"https:\/\/medium.com\/technology-and-society\/4d811b45840d\" target=\"_blank\">Social Media is a conversation, not a press release: How @nytkeller and @emmagkeller flunk understanding @adamslisa<\/a> by UNC assistant professor @Zeynep.\n<ul>\n<li>The headline nails one of the ways that neither Keller knows what they&#8217;re talking about: they simply don&#8217;t understand how social media works.<\/li>\n<li>This article relates that Emma Keller published parts of private communications without permission, having not even\u00a0<em>said\u00a0<\/em>she was working on a story, and then didn&#8217;t even tell Lisa the story had been published.<\/li>\n<li>&#8220;It was an oddly callous piece\u2014but that was not its only fault. Emma Keller admitted that she had conversed with the subject via email and DM on Twitter without telling her that she was doing a story about her, and quoted Lisa Adams\u2019 private direct messages without as much of a notification, let alone a permission. Emma Keller\u2019s piece also greatly misrepresented what was happening with Lisa Adams. \/\/\u00a0I knew the misrepresentation because I\u2019d been following Lisa Adams and a few other metastatic cancer patients for the last year &#8230;&#8221;<\/li>\n<li>&#8220;Good journalists know that\u2014to understand a community, you have to spend time\u00a0<em>in<\/em>\u00a0it and embedded\u00a0<em>within<\/em>\u00a0it, not just read transcripts of snippets from a town-hall meeting. Social media is not a snapshot that can be understood in one moment, or through back-scrolling. It\u2019s a lively conversation, a community, an interaction with implicit and explicit conversations and channels of signaling, communication and impression&#8230;&#8221;<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>On the SPM member listserv, Whitney Zatzkin pointed to Maryn McKenna @MarynMcK&#8217;s piece in <em>Wired<\/em>:\u00a0<a href=\"http:\/\/www.wired.com\/wiredscience\/2014\/01\/lisabadams-keller-ugh\/\" target=\"_blank\">Former New York Times Editor, Wife Publicly Tag-Team Criticism of Cancer Patient. Ugh.<\/a>, which tellingly starts with her own personal knowledge of Lisa, dating back two years.<\/li>\n<\/ul>\n<p>Other tweets from Susannah&#8217;s timeline shed light on reality:<\/p>\n<ul>\n<li><span style=\"line-height: 13px;\">I&#8217;m hoping to contribute data to the public conversation about how people share and learn from others&#8217; health experiences. Background first.<\/span><\/li>\n<li>45% of U.S. adults live with chronic health conditions &#8211; <a dir=\"ltr\" href=\"https:\/\/twitter.com\/pewresearch\">@pewresearch<\/a> <a dir=\"ltr\" title=\"http:\/\/pewrsr.ch\/1fryV3c\" href=\"http:\/\/t.co\/WSrzzgNPVS\" target=\"_blank\" rel=\"nofollow\" data-expanded-url=\"http:\/\/pewrsr.ch\/1fryV3c\">http:\/\/pewrsr.ch\/1fryV3c\u00a0<\/a><\/li>\n<li>Once online, people living with chronic conditions are more social about health, gathering and sharing information. <a dir=\"ltr\" title=\"http:\/\/pewrsr.ch\/1b2qtib\" href=\"http:\/\/t.co\/y914geAQtK\" target=\"_blank\" rel=\"nofollow\" data-expanded-url=\"http:\/\/pewrsr.ch\/1b2qtib\">http:\/\/pewrsr.ch\/1b2qtib\u00a0<\/a><\/li>\n<li>Once people begin learning from others online about how to cope with their illnesses, they are likely to also share what they know.<\/li>\n<li>This is not yet a mainstream activity, but it is real. <a dir=\"ltr\" href=\"https:\/\/twitter.com\/pewresearch\">@pewresearch<\/a> has gathered the data. I&#8217;ve gathered examples. <a dir=\"ltr\" title=\"http:\/\/pewrsr.ch\/1cVRWGP\" href=\"http:\/\/t.co\/1zDmP2puQH\" target=\"_blank\" rel=\"nofollow\" data-expanded-url=\"http:\/\/pewrsr.ch\/1cVRWGP\">http:\/\/pewrsr.ch\/1cVRWGP\u00a0<\/a><\/li>\n<li>19% of internet users living w a chronic condition went online in the past year to find others w same condition <a dir=\"ltr\" title=\"http:\/\/pewrsr.ch\/1eA4umv\" href=\"http:\/\/t.co\/djilOlIGCP\" target=\"_blank\" rel=\"nofollow\" data-expanded-url=\"http:\/\/pewrsr.ch\/1eA4umv\">http:\/\/pewrsr.ch\/1eA4umv\u00a0<\/a><\/li>\n<li>Unless you are living with chronic health conditions \u2014 or love someone who is \u2014 you don\u2019t see that side of the internet.<\/li>\n<li><a dir=\"ltr\" href=\"https:\/\/twitter.com\/pimunchers\">@pimunchers<\/a> 72% of adults with chronic conditions have internet access, compared with 89% of U.S. adults who report no conditions.<\/li>\n<li><a dir=\"ltr\" href=\"https:\/\/twitter.com\/pimunchers\">@pimunchers<\/a> So even that 19% is lower than you might expect. To those who use online health resources daily, it does seem low.<\/li>\n<li>&#8220;Breast cancer survivor group is a social movement&#8221; by <a dir=\"ltr\" href=\"https:\/\/twitter.com\/LizSzabo\">@LizSzabo<\/a> <a dir=\"ltr\" title=\"http:\/\/usat.ly\/RT2B8z\" href=\"http:\/\/t.co\/u8fAEJqUaC\" target=\"_blank\" rel=\"nofollow\" data-expanded-url=\"http:\/\/usat.ly\/RT2B8z\">http:\/\/usat.ly\/RT2B8z\u00a0<\/a>\u00a0[from October &#8211; part four of USA Today&#8217;s series on breast cancer covers the #BCSM twitter chat]<\/li>\n<li>Note: Vast majority of patients and caregivers who go online to help each other ALSO consult clinicians like everyone else.<\/li>\n<li>But for some the path to health is also found in the advice shared by someone like them. <a dir=\"ltr\" title=\"http:\/\/pewrsr.ch\/1cVRWGP\" href=\"http:\/\/t.co\/1zDmP2puQH\" target=\"_blank\" rel=\"nofollow\" data-expanded-url=\"http:\/\/pewrsr.ch\/1cVRWGP\">http:\/\/pewrsr.ch\/1cVRWGP<\/a><\/li>\n<\/ul>\n<h2><em>Added 7 a.m. next day<\/em><\/h2>\n<ul>\n<li>Yesterday afternoon the Times &#8220;Public Editor&#8221; Margaret Sullivan @Sulliview posted <a title=\"Permanent Link to Readers Lash Out About Bill Keller\u2019s Column on a Woman With Cancer\" href=\"http:\/\/publiceditor.blogs.nytimes.com\/2014\/01\/13\/readers-lash-out-about-bill-kellers-column-on-a-woman-with-cancer\/\" target=\"_blank\" rel=\"bookmark\">Readers Lash Out About Bill Keller\u2019s Column on a Woman With Cancer<\/a>. This is a \u00a0long, thoughtful piece about the journalistic aspects, for instance:\n<ul>\n<li>&#8220;I don\u2019t make a practice of commenting on whether or not I agree with columnists, or whether or not I like their columns in general or on a particular day. That may have to do with David Brooks on pot-smoking or Maureen Dowd on Chris Christie. That\u2019s pretty clearly not my job as public editor.&#8221;In this case, I\u2019ll go so far as to say that there are issues here of tone and sensitivity. For example, when Ms. Adams has made it so abundantly clear in her own work that she objects to the use of fighting metaphors in describing experiences with cancer, it was regrettable to use them throughout a column about her, starting with the first sentence. It suggests that Mr. Keller didn\u2019t make a full effort to understand the point of view of the person he\u2019s writing about on the very big and public stage that is The Times&#8230;.&#8221;<\/li>\n<li>Sullivan also notes that reaction to the column has not been universally negative.<\/li>\n<\/ul>\n<\/li>\n<li>reaction<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Update 9:20 pm ET: see important additions at the subhead below. When I wrote this today I didn&#8217;t have time to dig for excellent links like those. Thanks to Susannah [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false},"version":2}},"categories":[281,208],"tags":[],"coauthors":[],"class_list":["post-15825","post","type-post","status-publish","format-standard","hentry","category-ethics","category-social-media"],"jetpack_publicize_connections":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.6 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Husband-wife pieces in NY Times and The Guardian break ethics and lack a clue (re @AdamsLisa) - SPM Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Husband-wife pieces in NY Times and The Guardian break ethics and lack a clue (re @AdamsLisa) - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"Update 9:20 pm ET: see important additions at the subhead below. When I wrote this today I didn&#8217;t have time to dig for excellent links like those. Thanks to Susannah [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html\" \/>\n<meta property=\"og:site_name\" content=\"SPM Blog\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/participatorymedicine\" \/>\n<meta property=\"article:published_time\" content=\"2014-01-13T20:38:16+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2014-01-14T13:01:42+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2014\/01\/Guardian-on-Lisa-Adams-300x191.png\" \/>\n<meta name=\"author\" content=\"e-Patient Dave\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@s4pm\" \/>\n<meta name=\"twitter:site\" content=\"@s4pm\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"e-Patient Dave\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html#article\",\"isPartOf\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html\"},\"author\":{\"name\":\"e-Patient Dave\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/964cf120da8ac17067b46802eb561e5d\"},\"headline\":\"Husband-wife pieces in NY Times and The Guardian break ethics and lack a clue (re @AdamsLisa)\",\"datePublished\":\"2014-01-13T20:38:16+00:00\",\"dateModified\":\"2014-01-14T13:01:42+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html\"},\"wordCount\":1116,\"commentCount\":24,\"publisher\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#organization\"},\"image\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html#primaryimage\"},\"thumbnailUrl\":\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2014\/01\/Guardian-on-Lisa-Adams-300x191.png\",\"articleSection\":[\"Ethics\",\"Social Media\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html\",\"url\":\"https:\/\/participatorymedicine.org\/epatients\/2014\/01\/husband-wife-pieces-in-ny-times-and-the-guardian-break-ethics-and-lack-a-clue-re-adamslisa.html\",\"name\":\"Husband-wife pieces in NY Times and The Guardian break ethics and lack a clue (re @AdamsLisa) - 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