{"id":12841,"date":"2012-07-25T09:09:53","date_gmt":"2012-07-25T13:09:53","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=12841"},"modified":"2012-07-25T09:09:53","modified_gmt":"2012-07-25T13:09:53","slug":"its-not-about-being-online-its-about-being-empowered-and-engaged-thinking-and-speaking-up","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/07\/its-not-about-being-online-its-about-being-empowered-and-engaged-thinking-and-speaking-up.html","title":{"rendered":"It&#8217;s not about being online. It&#8217;s about being empowered and engaged &#8211; thinking and speaking up."},"content":{"rendered":"<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2012\/07\/what-do-%e2%80%98engaged%e2%80%99-patients-do.html\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-medium wp-image-12842\" title=\"Eve Harris's post\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2012\/07\/Screen-Shot-2012-07-25-at-6.07.18-AM-300x298.png\" alt=\"Screen shot of Eve Harris's post\" width=\"300\" height=\"298\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2012\/07\/Screen-Shot-2012-07-25-at-6.07.18-AM-300x298.png 300w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2012\/07\/Screen-Shot-2012-07-25-at-6.07.18-AM-150x150.png 150w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2012\/07\/Screen-Shot-2012-07-25-at-6.07.18-AM-600x596.png 600w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2012\/07\/Screen-Shot-2012-07-25-at-6.07.18-AM.png 662w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a>On Monday Ileana Balcu <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2012\/07\/what-do-%e2%80%98engaged%e2%80%99-patients-do.html\" target=\"_blank\">posted<\/a> about a great new article by SPM member Eve Harris, whom <a href=\"http:\/\/www.e-patients.net\/?s=%22eve+harris%22\" target=\"_blank\">we&#8217;ve covered before<\/a>. Eve&#8217;s post is a superb depiction of how an\u00a0<em>empowered<\/em>\u00a0patient &#8211; someone who knows how to think for themselves and speak up &#8211; will\u00a0<em>engage<\/em>\u00a0in their case.<\/p>\n<p>These are the real &#8220;e&#8221;s in e-patient. This is a teachable moment, because as the e-patient meme has spread, it&#8217;s sometimes repeated incorrectly. It&#8217;s <em>not <\/em>about being online, it&#8217;s about being empowered and engaged.<\/p>\n<p>From the opening of Eve&#8217;s post:<\/p>\n<blockquote><p>Desiree Basila was 52 when her stage zero breast cancer \u00a0&#8230; was diagnosed. While her cancer was found very early, she was ultimately diagnosed with the disease in both breasts. &#8230; Doctors said her only realistic treatment option was double mastectomy \u2014 which Basila opposed. \u201cIf I die at 75 instead of 95 I think I can live with that,\u201d she told me recently. \u201cI did not really want to have a double mastectomy.\u201d<\/p><\/blockquote>\n<p><em>That&#8217;s<\/em> empowered and engaged:<!--more--><\/p>\n<ul>\n<li><strong>Empowered<\/strong> people think for themselves, know what they want, and speak up about it.<\/li>\n<ul>\n<li>A disempowered person is recognized by how they shrug and say &#8220;Well, there&#8217;s nothin&#8217; <em>I<\/em>\u00a0can do about it&#8230;&#8221;<\/li>\n<\/ul>\n<li>A person who&#8217;s <strong>engaged<\/strong> in their care is thinking, listening, wondering. &#8220;Are there any other options?&#8221; &#8220;Is this what&#8217;s best?&#8221;<\/li>\n<ul>\n<li>In contrast, a <em>dis<\/em>engaged patient more or less goes through the process with their eyes closed, like a car in a car wash.<\/li>\n<\/ul>\n<\/ul>\n<p>Not everyone wants to be an e-patient, and that&#8217;s fine: some people just want to be taken care of. SPM doesn&#8217;t oppose that. We do advocate for recognition and acceptance of empowered, engaged patients as active players, in fixing healthcare and\u00a0in each individual case.<\/p>\n<p>Like Desiree Basila.<\/p>\n<h2><strong>Language matters.<\/strong><\/h2>\n<p>If people think e-patients are only saying &#8220;Let us google!&#8221; our movement will fail.<\/p>\n<p>This is important.\u00a0Being online is a tool we use, but it&#8217;s not our purpose.<\/p>\n<p>Our work in the Society is <em>to change culture<\/em>, and that involves changing what people think about and how they think. And that all happens in language.<\/p>\n<p>We must teach:<\/p>\n<ul>\n<li><strong>patients<\/strong> to be empowered and engaged<\/li>\n<li><strong>providers<\/strong> to welcome patients who speak up and who want to engage in care (and to stop discouraging that, as sometimes happens)<\/li>\n<li><strong>policy people everywhere<\/strong> (not just the US government) to encourage engagement and write policies that help. (For instance, Denmark famously has a great national EMR, but patients aren&#8217;t allowed to put data in it, or even get mistakes fixed!)<\/li>\n<li><strong>researchers<\/strong>\u00a0to continue studying how patient engagement leads to better outcomes and satisfaction &#8211; and the role being online plays<\/li>\n<li><strong>industry<\/strong> to develop tools (gadgets, software, devices) that help us be engaged in our care, and to speak to us (market) in a way that recognizes our capacity as engaged partners.<\/li>\n<\/ul>\n<h2><strong>Why the confusion? <\/strong><\/h2>\n<p>When our founder &#8220;Doc Tom&#8221; Ferguson coined the term &#8220;e-patient&#8221; in the 1990s, the Web was only a few years old. <em>In those days, any online patient was by definition empowered, activated, engaged<\/em>. Back then online patients were outliers.<\/p>\n<p>Not true today: almost everyone&#8217;s online. Our mission in SPM is not to get acceptance of googling, it&#8217;s to change the culture of medicine so that <strong>every provider, every insurance company, every vendor in the industry<\/strong> thinks in terms of putting <strong>power in the hands of the ultimate stakeholder:<\/strong> the patient, who&#8217;ll live, die &#8211; or lose body parts &#8211; in the process.<\/p>\n<p>Thank you, Eve, for a great article. Thank you, Desiree, for who you are. And thank you, Ileana, for spotting this story on what was a busy news day for us here.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>On Monday Ileana Balcu posted about a great new article by SPM member Eve Harris, whom we&#8217;ve covered before. 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