{"id":5845,"date":"2010-05-21T07:01:56","date_gmt":"2010-05-21T12:01:56","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=5845"},"modified":"2010-05-21T08:12:37","modified_gmt":"2010-05-21T13:12:37","slug":"a-new-conversation-about-health-privacy-whos-in","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/a-new-conversation-about-health-privacy-whos-in.html","title":{"rendered":"A New Conversation About Health Privacy: Who&#8217;s In?"},"content":{"rendered":"<p>Facebook has sparked a new debate about privacy and I think it&#8217;s time to bring it to health care.<!--more--><\/p>\n<p>What does it mean when millions of people flock to share\/<a href=\"http:\/\/www.time.com\/time\/printout\/0,8816,1990586,00.html\" target=\"_blank\">overshare<\/a> information, even as  Facebook&#8217;s<a href=\"http:\/\/mattmckeon.com\/facebook-privacy\/\" target=\"_blank\"> default privacy settings<\/a> have slowly become openness settings (but the company <a href=\"http:\/\/www.zephoria.org\/thoughts\/archives\/2010\/05\/14\/facebook-and-radical-transparency-a-rant.html\" target=\"_blank\">maintains radio silence<\/a>)? Pew Internet research shows that a sizeable portion of the population (<a href=\"http:\/\/www.pewinternet.org\/Media-Mentions\/2010\/Tell-All-Generation-Learns-to-Keep-Things-Offline.aspx\" target=\"_blank\">young people, in particular<\/a>) carefully manage their online reputations, but where does that leave the rest? Consumer groups in the U.S. have <a href=\"http:\/\/epic.org\/privacy\/facebook\/\">requested an investigation<\/a> and the Canadian and German governments are <a href=\"http:\/\/www.economist.com\/business-finance\/displaystory.cfm?story_id=16167766\" target=\"_blank\">sharpening their knives<\/a>, too.<\/p>\n<p>Now, to add the health angle,  PatientsLikeMe&#8217;s Ben Heywood posted yesterday about <a href=\"http:\/\/blog.patientslikeme.com\/2010\/05\/20\/bentransparencymessage\/\" target=\"_blank\">transparency, openness, and privacy<\/a>:<\/p>\n<blockquote><p>We do not want anyone to be surprised by the impact of sharing data on  PatientsLikeMe.\u00a0 We believe in openness, but we also want people to <strong><em>knowingly<\/em> <\/strong>make the choice to be open with their health information.<\/p>\n<p>&#8230;Recently, we suspended a user who registered as a patient in the Mood  community.\u00a0 This user was not a patient, but rather a computer program  that scrapes (i.e. reads and stores) forum information.\u00a0 Our system,  which alerts us when an account has looked at too many posts or too many  patient profiles within a specified time interval, detected the user.\u00a0  We have verified the account was linked to a major media monitoring  company, and we have since sent a cease and desist letter to its  executives.<\/p><\/blockquote>\n<p>I love that word <em>knowingly<\/em>. Are  consumers competent to make the decision to openly share their  <a href=\"http:\/\/www.projecthealthdesign.org\/about\" target=\"_blank\">observations of daily living<\/a>? Is it OK that a private company can  leverage that data for profit (as long as they&#8217;re open about it)? What would be different about the <a href=\"http:\/\/www.zephoria.org\/thoughts\/archives\/2010\/05\/14\/facebook-and-radical-transparency-a-rant.html\" target=\"_blank\">Facebook controversy<\/a> if Mark Zuckerberg had come  out with a statement like that when the first stories broke?<\/p>\n<p>I&#8217;m reminded of what Paul Ohm wrote about the <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2009\/09\/hipaas-broken-promise.html\" target=\"_blank\">broken promise of HIPAA<\/a>:<\/p>\n<blockquote><p>[I]t is hard to imagine another privacy problem with such  starkly  presented benefits and costs. On the one hand, when medical  researchers  can freely trade information, they can develop treatments  to ease human  suffering and save lives. On the other hand, our medical  secrets are  among the most sensitive we hold.<\/p><\/blockquote>\n<p>I&#8217;m also reminded of my own research finding that people living with chronic  disease have a secret weapon: <a href=\"http:\/\/www.pewinternet.org\/Reports\/2010\/Chronic-Disease\/Part-5.aspx?r=1\" target=\"_blank\">Each other<\/a>. Mobile, social technologies are tapping in to a human need to connect with each other, to share, to lend a helping hand, and to laugh.<\/p>\n<p>I&#8217;d like to start a conversation about health privacy that includes an open dialogue about the risks and benefits of sharing. Who&#8217;s in?<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Facebook has sparked a new debate about privacy and I think it&#8217;s time to bring it to health care. &nbsp;<\/p>\n","protected":false},"author":29,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"_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","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[4,59],"tags":[277,879,202,868,115],"coauthors":[],"class_list":["post-5845","post","type-post","status-publish","format-standard","hentry","category-patient-networks","category-policy-issues","tag-facebook","tag-hipaa","tag-patientslikeme","tag-pew-internet","tag-privacy"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>A New Conversation About Health Privacy: Who&#039;s In? 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