{"id":8638,"date":"2011-03-04T02:45:52","date_gmt":"2011-03-04T07:45:52","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=8638"},"modified":"2011-03-04T02:45:52","modified_gmt":"2011-03-04T07:45:52","slug":"nprs-talk-of-the-nation-patients-seek-moral-and-medical-support-online","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2011\/03\/nprs-talk-of-the-nation-patients-seek-moral-and-medical-support-online.html","title":{"rendered":"NPR&#8217;s Talk of the Nation: Patients Seek Moral and Medical Support Online"},"content":{"rendered":"<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2011\/03\/nprlogo_138x46.gif\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-8639\" style=\"margin-top: 3px;\" title=\"\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2011\/03\/nprlogo_138x46.gif\" alt=\"NPR logo\" width=\"138\" height=\"46\" \/><\/a>Yesterday (March 3), NPR&#8217;s popular program &#8220;Talk of the Nation&#8221; covered something we discuss often: how e-patients find information and find each other, online. Featured guests were Pat Furlong, mother of two boys with a rare disease, who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here.<\/p>\n<p>The audio is\u00a0<a href=\"http:\/\/www.npr.org\/player\/v2\/mediaPlayer.html?action=1&amp;t=1&amp;islist=false&amp;id=134235469&amp;m=134235459\" target=\"_blank\">here<\/a>.<\/p>\n<p>It&#8217;s a good combination: Pat speaks from the heart about her own experience and her passion for community, and Susannah as usual speaks as an &#8220;internet geologist&#8221; &#8211; as she once put it, &#8220;A geologist doesn&#8217;t have opinions about the rocks, she just observes and describes them.&#8221; Susannah spoke about her newly released report <a href=\"http:\/\/www.pewinternet.org\/Reports\/2011\/P2PHealthcare.aspx\" target=\"_blank\">Peer-to-peer Healthcare<\/a>, about which she recently wrote <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2011\/02\/health-care-out-loud.html\">here<\/a>.<\/p>\n<p><!--more-->Listener comments begin around 13:00. Examples:<\/p>\n<ul>\n<li>A woman describes how she started a Facebook group for her painful chronic condition (ankylosing spondylitis), and it&#8217;s grown into a website, \u00a0<a href=\"www.HurtingButHelpful.org\" target=\"_blank\">HurtingButHelpful.org<\/a>. (<a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2010\/12\/the-spoon-theory-brilliant-description-of-chronic-illness.html\" target=\"_blank\">Spoonies<\/a>, take note!) What drove her to create a patient community? &#8220;There&#8217;s no one else who can understand what I&#8217;m talking about.&#8221;<\/li>\n<li>The mother of a newborn with a heart defect found similar parents online. Hearing their stories &#8211; and even seeing an upsetting photo &#8211; helped her prepare for the surgery.<\/li>\n<li>On the downside, the daughter of an ovarian cancer patient said her now-cured mom keeps going online to patient communities and getting scared by what she reads. (Host Neal Conan&#8217;s observation: &#8220;There other parts of the computer that can be addictive, and I guess this one can too.&#8221;)<\/li>\n<\/ul>\n<p>It&#8217;s heartening to hear coverage of online patient communities, including the risks and challenges,\u00a0in a respected outlet like NPR. (<em>Time<\/em> <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2010\/02\/participatory-medicine-in-time-magazine.html\" target=\"_blank\">covered it<\/a>, too, a year ago.) And there&#8217;s no equal for the reality check of Pew&#8217;s data. Some patient activists suggest (and some people fear) that the internet &#8220;frees&#8221; patients from doctors, but Pew says that&#8217;s not what people are doing:<\/p>\n<ul>\n<li>70% of adults in the U.S. say they received information, care, or support from <span style=\"text-decoration: underline;\">a health professional<\/span>.<\/li>\n<li>54% of adults say they turned to <span style=\"text-decoration: underline;\">friends and family<\/span>.<\/li>\n<li>20% say they turned to <span style=\"text-decoration: underline;\">peers with\u00a0the same condition<\/span>.<\/li>\n<\/ul>\n<p style=\"padding-left: 30px;\">&#8220;The oft-expressed fear that patients are using the internet to self-diagnose and self-medicate without reference to medical professionals does not emerge in national phone surveys or in this special rare-disease community survey.&#8221;<\/p>\n<p>NPR&#8217;s <a href=\"http:\/\/www.npr.org\/2011\/03\/03\/134235469\/More-Patients-Seeking-Medical-Support-Online\" target=\"_blank\">accompanying online post<\/a> ends with a line that echos what we&#8217;ve said here about the <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2010\/06\/great-news-from-mama-lion-engelman-and-daughter.html\">Mama Lion<\/a> type of e-patient:<\/p>\n<p style=\"padding-left: 30px;\">&#8220;You will not find a more passionate detective,&#8221; Fox adds, &#8220;than a mom who is trying to find out what she can do for a child.&#8221;<\/p>\n<p>The complete transcript is <a href=\"http:\/\/www.npr.org\/templates\/transcript\/transcript.php?storyId=134235469\" target=\"_blank\">here<\/a>, including a few listener comments. One in particular, by a Ben Munoz,\u00a0caught my attention:<\/p>\n<p style=\"padding-left: 30px;\">&#8220;To anyone with a rare disease, the first thing you should do is locate an online support community for your condition.&#8221;<\/p>\n<p>I wish we had a list of such communities &#8211; perhaps the members of SPM should start one?<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Yesterday (March 3), NPR&#8217;s popular program &#8220;Talk of the Nation&#8221; covered something we discuss often: how e-patients find information and find each other, online. 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