{"id":95667,"date":"2010-08-30T00:00:00","date_gmt":"2010-08-30T05:00:00","guid":{"rendered":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/2010\/08\/30\/e-patients-cyberchondriacs-and-why-we-should-stop-calling-names\/"},"modified":"2024-04-14T04:17:45","modified_gmt":"2024-04-14T09:17:45","slug":"e-patients-cyberchondriacs-and-why-we-should-stop-calling-names","status":"publish","type":"post","link":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/2010\/08\/30\/e-patients-cyberchondriacs-and-why-we-should-stop-calling-names\/","title":{"rendered":"E-patients, Cyberchondriacs, and Why We Should Stop Calling Names"},"content":{"rendered":"<p class=\"wp-block-paragraph\">New concepts need gimmicks. Proven concepts do not.<\/p>\n\n<p class=\"wp-block-paragraph\">The phenomenon of using the internet to gather and share health information is now <a href=\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/Reports\/2009\/8-The-Social-Life-of-Health-Information\/02-A-Shifting-Landscape\/2-61-of-adults-in-the-US-gather-health-information-online.aspx\" target=\"_blank\" rel=\"noopener noreferrer\">mainstream<\/a>. It&#8217;s time to change how we talk about it, revising and maybe even retiring certain terms. Carlos Rizo and I invite you (everyone!) to join our discussion on Wed. Sept. 1 at 12noon Eastern: <a href=\"http:\/\/www.blogtalkradio.com\/innovationcell\/2010\/09\/01\/e-patients-cyberchondriacs-and-why-we-should-stop-calling-names\" target=\"_blank\" rel=\"noopener noreferrer\">E-patients, Cyberchondriacs, and Why We Should Stop Calling Names<\/a>.<\/p>\n\n<p class=\"wp-block-paragraph\">Some history to build our case:<\/p>\n\n<p class=\"wp-block-paragraph\">In 1998, only about one-third of American adults had access to the internet. Harris Interactive published pioneering research about how internet users gather health information online, dubbing these 54 million people &#8220;<a href=\"http:\/\/www.harrisinteractive.com\/NewsRoom\/HarrisPolls\/tabid\/447\/mid\/1508\/articleId\/448\/ctl\/ReadCustom%20Default\/Default.aspx\" target=\"_blank\" rel=\"noopener noreferrer\">cyberchondriacs<\/a>.&#8221;<\/p>\n\n<p class=\"wp-block-paragraph\">In 1999, <a href=\"http:\/\/www.doctom.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">Tom Ferguson, MD<\/a>, came up with the term &#8220;<a href=\"http:\/\/e-patients.net\/about-e-patientsnet\" target=\"_blank\" rel=\"noopener noreferrer\">e-patients<\/a>&#8221; to describe individuals who are <b>equipped, enabled, empowered and engaged<\/b> in their health and health care decisions. He began work on a <a href=\"http:\/\/www.acor.org\/epatientswiki\/index.php\/Main_Page\" target=\"_blank\" rel=\"noopener noreferrer\">white paper<\/a>, commissioned by the Robert Wood Johnson Foundation, to describe this new development.<\/p>\n\n<p class=\"wp-block-paragraph\">In 2000, Lee Rainie and I wrote the Pew Internet Project&#8217;s first health report, <a href=\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/Reports\/2000\/The-Online-Health-Care-Revolution.aspx\" target=\"_blank\" rel=\"noopener noreferrer\">The Online Health Care Revolution<\/a>, using the phrase &#8220;health seeker&#8221; to describe someone who used the internet for health information.<\/p>\n\n<p class=\"wp-block-paragraph\">Just to remind you of the sea change we&#8217;ve been through, in the year 2000:<\/p>\n\n<ul class=\"wp-block-list\">\n<li>46% of American adults had access to the internet (now: <a href=\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/Static-Pages\/Trend-Data\/Whos-Online.aspx\" target=\"_blank\" rel=\"noopener noreferrer\">74%<\/a>) <\/li>\n<li>5% of U.S. households had broadband connections (now: <a href=\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/Trend-Data\/Home-Broadband-Adoption.aspx\" target=\"_blank\" rel=\"noopener noreferrer\">66%<\/a>) <\/li>\n<li>25% of American adults looked online for health information (now: <a href=\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/Reports\/2009\/8-The-Social-Life-of-Health-Information\/02-A-Shifting-Landscape\/2-61-of-adults-in-the-US-gather-health-information-online.aspx\" target=\"_blank\" rel=\"noopener noreferrer\">61%<\/a>)<\/li>\n<\/ul>\n\n<p class=\"wp-block-paragraph\">Over the last 10 years, using the internet to get health information has become an assumption, not an exception. The repetition of this finding from every sector &#8212; for-profit, non-profit, academic, government &#8212; has made it boring.<\/p>\n\n<p class=\"wp-block-paragraph\">But I draw inspiration from <a href=\"http:\/\/www.ted.com\/talks\/clay_shirky_how_cellphones_twitter_facebook_can_make_history.html\" target=\"_blank\" rel=\"noopener noreferrer\">Clay Shirky, who has said<\/a>, <b>&#8220;Tools don&#8217;t get socially interesting until they get technologically boring.&#8221;<\/b><\/p>\n\n<figure><img decoding=\"async\" alt=\"\" title=\"More...\" src=\"http:\/\/e-patients.net\/wp-includes\/js\/tinymce\/plugins\/wordpress\/img\/trans.gif\"><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">Talking about people Googling for health info is boring. Talking about how health is becoming social online is interesting &#8212; even exciting. People are sharing and critiquing what they find. If they don&#8217;t find what they need, they are creating it.<\/p>\n\n<p class=\"wp-block-paragraph\">In short,\u00a0the data \u2013 Pew Internet\u2019s and others\u2019 &#8212; are quite clear that <b>the online health revolution is over and that use of digital tools in tackling health problems is the natural state of affairs<\/b>. Many of those who are involved in the effort to understand this shift believe that now is the time to build the new civilization.\u00a0 Those who have studied the data and watched the struggle to call this phenomenon by an appropriate name think that means calling people who are part of this widespread phenomenon what they are: People.\u00a0 They believe that the older labels like our \u201chealth seekers,\u201d Harris Interactive\u2019s \u201ccyberchondriacs\u201d and even Tom Ferguson\u2019s \u201ce-patients\u201d now are less than helpful and accurate. They believe the right word is simply \u201cpeople.\u201d<\/p>\n\n<p class=\"wp-block-paragraph\">Let&#8217;s talk about what this means &#8212; in the <a href=\"http:\/\/e-patients.net\/archives\/2010\/08\/e-patients-cyberchondriacs-and-why-we-should-stop-calling-names.html#comments\">comments <\/a>on e-patients.net or on <a href=\"http:\/\/www.blogtalkradio.com\/innovationcell\/2010\/09\/01\/e-patients-cyberchondriacs-and-why-we-should-stop-calling-names\" target=\"_blank\" rel=\"noopener noreferrer\">Wednesday<\/a>.<\/p>\n\n<p class=\"wp-block-paragraph\">For more background on this discussion, please see:<\/p>\n\n<p class=\"wp-block-paragraph\">Brian Reid&#8217;s post: <a href=\"http:\/\/blog.wcgworld.com\/2010\/08\/its-time-to-retire-cyberchondriacs\" target=\"_blank\" rel=\"noopener noreferrer\">It\u2019s Time to Retire \u2018Cyberchondriacs\u2019<\/a><\/p>\n\n<p class=\"wp-block-paragraph\">Jen McCabe&#8217;s post: <a href=\"http:\/\/hmrx.posterous.com\/the-redefining-patienthood-project-launches-a\" target=\"_blank\" rel=\"noopener noreferrer\">The Redefining Patienthood Project Launches<\/a> &#8211; Aims, Goals, and Many, Many Questions Ahead<\/p>\n\n<p class=\"wp-block-paragraph\">Kevin Kruse&#8217;s post: <a href=\"http:\/\/blog.kruresearch.com\/2009\/05\/what-do-you-mean-e-patient\/\" target=\"_blank\" rel=\"noopener noreferrer\">What do you mean, \u201ce-patient\u201d?<\/a><\/p>\n\n<p class=\"wp-block-paragraph\">Amy Tenderich&#8217;s post: <a href=\"http:\/\/www.diabetesmine.com\/2009\/02\/%E2%80%9Cpatients%E2%80%9D-versus-%E2%80%9Chealth-care-consumers%E2%80%9D-both-if-you-ask-me.html\" target=\"_blank\" rel=\"noopener noreferrer\">&#8220;Patients&#8221; versus &#8220;Health Care Consumers&#8221;? Both, If You Ask Me<\/a><\/p>\n\n<p class=\"wp-block-paragraph\">Dave deBronkart&#8217;s post: <a href=\"http:\/\/e-patients.net\/archives\/2008\/03\/when-the-patient-is-a-yahoo.html\" target=\"_blank\" rel=\"noopener noreferrer\">When the Patient is a Yahoo<\/a><\/p>\n\n<p class=\"wp-block-paragraph\">My posts: <a href=\"http:\/\/e-patients.net\/archives\/2007\/11\/googlers-vs-e-patients-vs-cyberchondriacs.html\" target=\"_blank\" rel=\"noopener noreferrer\">Googlers vs. e-patients vs. cyberchondriacs<\/a> and <a href=\"http:\/\/e-patients.net\/archives\/2008\/12\/cyberchondria-old-wine-in-new-bottles.html\" target=\"_blank\" rel=\"noopener noreferrer\">Cyberchondria: Old Wine in New Bottles<\/a><\/p>\n\n<p class=\"wp-block-paragraph\">And from a different sector, also struggling with terms as they re-invent themselves:<\/p>\n\n<p class=\"wp-block-paragraph\">Alex Howard: <a href=\"http:\/\/gov20.govfresh.com\/on-language-putting-government-2-0-in-context\/\" target=\"_blank\" rel=\"noopener noreferrer\">On Language: Putting Government 2.0 in Context<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>The phenomenon of using the internet to gather and share health information is now mainstream. 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