{"id":3870,"date":"2009-11-16T09:55:31","date_gmt":"2009-11-16T14:55:31","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=3870"},"modified":"2009-11-16T09:56:03","modified_gmt":"2009-11-16T14:56:03","slug":"participatory-medicine-and-health-data-rights-on-npr","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/11\/participatory-medicine-and-health-data-rights-on-npr.html","title":{"rendered":"Participatory medicine and health data rights on NPR"},"content":{"rendered":"<p>NPR&#8217;s Morning Edition story, &#8220;<a href=\"http:\/\/www.npr.org\/templates\/story\/story.php?storyId=120381580\" target=\"_blank\">Patients Turn to Online Buddies for Help Healing<\/a>,&#8221; combined <a href=\"http:\/\/www.pewinternet.org\/topics\/Health.aspx\" target=\"_blank\">research <\/a>and <a href=\"http:\/\/www.patientslikeme.com\/\" target=\"_blank\">real-life examples<\/a>, <a href=\"http:\/\/participatorymedicine.org\/\" target=\"_blank\">participatory medicine<\/a> and <a href=\"http:\/\/www.healthdatarights.org\/\" target=\"_blank\">health data rights<\/a>.<\/p>\n<p>Much of what I said during my interview with <a href=\"http:\/\/www.npr.org\/templates\/story\/story.php?storyId=2101159\" target=\"_blank\">Joseph Shapiro<\/a> is based on what I&#8217;ve written and read here on e-patients.net, so, first, thank you.<\/p>\n<p>I&#8217;ve already started answering questions on Twitter about some of the assertions in the story, so let&#8217;s keep the conversation going here, too.<!--more--><\/p>\n<p><strong>From @markhawker: <span><span>What does the &#8220;e&#8221; stand for in &#8220;e-patient&#8221;? If only 20% contribute online, then why do the other 80% have an &#8220;e&#8221;?<\/span><\/span><\/strong><\/p>\n<p><a href=\"http:\/\/www.doctom.com\/\" target=\"_blank\">Tom Ferguson<\/a> coined the term e-patients to describe individuals who are <strong>equipped, enabled, empowered and engaged<\/strong> in their health and health care decisions. He envisioned health care as an equal partnership between e-patients and health professionals and systems that support them.<\/p>\n<p><span><span>The 80\/20 split is pretty typical (see: <a rel=\"nofollow\" href=\"http:\/\/bit.ly\/10Z9cs\" target=\"_blank\">http:\/\/bit.ly\/10Z9cs<\/a>). And listening is a form of engagement, wouldn&#8217;t you agree?<\/span><\/span><\/p>\n<p><strong><span><span>@markhawker: <\/span><\/span><span><span>Yes, the <a href=\"http:\/\/en.wikipedia.org\/wiki\/Pareto_principle\" target=\"_blank\">Pareto Principle<\/a> occurs in most walks of life! I&#8217;m interested in how individuals make collective decisions e.g. <\/span><\/span><span><span>they may &#8220;engage&#8221; by listening and then consult a friend, relative or carer offline. Or, the e-patient may not be the actor! <\/span><\/span><span><span>Have you looked at how the different mediums (online, offline etc.) interact to inform decisions? Like, the case-mix?<\/span><\/span><\/strong><\/p>\n<p><span><span>Yes, an early finding (2000) was that half of health searches are on behalf of s.o. else and yes, offline sources still central.\u00a0 See: <a href=\"http:\/\/pewinternet.org\/Reports\/2000\/The-Online-Health-Care-Revolution.aspx\" target=\"_blank\">The Online Health Care Revolution<\/a> (2000) and <a href=\"http:\/\/pewinternet.org\/Reports\/2009\/8-The-Social-Life-of-Health-Information.aspx\" target=\"_blank\">The Social Life of Health Information<\/a> (2009).\u00a0 My colleagues at the Pew Research Center&#8217;s Internet &amp; American Life Project have looked at <a href=\"http:\/\/pewinternet.org\/topics\/Decision-Making.aspx\" target=\"_blank\">decision-making<\/a> in other sectors. John Horrigan&#8217;s 2008 report, <a href=\"http:\/\/pewinternet.org\/Reports\/2008\/The-Internet-and-Consumer-Choice.aspx\" target=\"_blank\">The Internet and Consumer Choice<\/a>, is my favorite.<br \/>\n<\/span><\/span><\/p>\n<p><span><span>Anyone have more citations to share with Mark?<\/span><\/span><\/p>\n<p><strong><span><span>Regarding my quote, &#8220;<\/span><\/span>They are posting their first-person accounts of treatments and side effects from medications&#8230;&#8221; illustrating the <span><span><a href=\"http:\/\/www.pewinternet.org\/Reports\/2009\/8-The-Social-Life-of-Health-Information\/03-Social-Media-and-Health\/1-Many-seek-a-justintime-someonelikeme-but-few-post-their-own-stories.aspx?r=1\" target=\"_blank\">20% of e-patients<\/a> who contribute to the online conversation about health:<\/span><\/span><\/strong><\/p>\n<p><span><span><a href=\"http:\/\/www.patientslikeme.com\/\" target=\"_blank\">PatientsLikeMe<\/a> is an excellent example of what our research shows, but I was also thinking about the old-school communities (<a href=\"http:\/\/www.acor.org\/\" target=\"_blank\">ACOR<\/a>, <a href=\"http:\/\/brain.hastypastry.net\/forums\/\" target=\"_blank\">Braintalk<\/a>, <a href=\"http:\/\/groups.yahoo.com\/\" target=\"_blank\">Yahoo! groups<\/a>) as well as other start-ups (<a href=\"http:\/\/www.curetogether.com\/\" target=\"_blank\">CureTogether<\/a>, <a href=\"http:\/\/www.inspire.com\/\" target=\"_blank\">Inspire<\/a>), patient blogs (<a href=\"http:\/\/www.diabetesmine.com\/\" target=\"_blank\">DiabetesMine<\/a>) and established websites (<a href=\"http:\/\/www.webmd.com\/\" target=\"_blank\">WebMD<\/a>, <a href=\"http:\/\/www.healthcentral.com\/\" target=\"_blank\">HealthCentral<\/a>). Honestly, these are just the sites that come to mind immediately and I hesitate to start a list &#8212; it could take up pages and pages. <\/span><\/span><\/p>\n<p><strong><span><span>Regarding my quote, <\/span><\/span>&#8220;The patients on the vanguard, who understand what&#8217;s at stake, are saying it&#8217;s not meaningful if I can&#8217;t use it.&#8221;<\/strong><\/p>\n<p>I blatantly stole that line from Ted Eytan whose post, <a href=\"http:\/\/www.tedeytan.com\/2009\/05\/28\/3086\" target=\"_blank\">Is it meaningful if patients can&#8217;t use it?<\/a>, chronicles our first meeting with Regina Holliday (who was featured in an NPR story by Joseph Shapiro last week: <a href=\"http:\/\/www.npr.org\/templates\/story\/story.php?storyId=120028213\" target=\"_blank\">A Widow Paints a Health Care Protest<\/a>).<\/p>\n<p><strong>Let&#8217;s keep the conversation going:\u00a0 Questions? Comments? Complaints?<\/strong><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>NPR&#8217;s Morning Edition story, &#8220;Patients Turn to Online Buddies for Help Healing,&#8221; combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my [&hellip;]<\/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":[1],"tags":[2793,1492,2790,2798,2796,854,2802,417,19,571,2800,2794,2803,2792,413,2789,2799,129,2801,2795,765,2804,852,443,857,276,2797],"coauthors":[],"class_list":["post-3870","post","type-post","status-publish","format-standard","hentry","category-general","tag-answering-questions","tag-assertions","tag-buddies","tag-case-mix","tag-collective-decisions","tag-health-care-decisions","tag-health-care-revolution","tag-health-data","tag-health-information","tag-health-professionals","tag-health-searches","tag-health-systems","tag-john-horrigan","tag-joseph-shapiro","tag-medicine","tag-medicine-and-health","tag-mediums","tag-npr","tag-offline-sources","tag-pareto-principle","tag-partnership","tag-person-accounts","tag-pew-research-center","tag-real-health","tag-tom-ferguson","tag-twitter","tag-walks-of-life"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Participatory medicine and health data rights on NPR - 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\/2009\/11\/participatory-medicine-and-health-data-rights-on-npr.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Participatory medicine and health data rights on NPR - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"NPR&#8217;s Morning Edition story, &#8220;Patients Turn to Online Buddies for Help Healing,&#8221; combined research and real-life examples, participatory medicine and health data rights. 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