{"id":10227,"date":"2011-09-08T15:35:39","date_gmt":"2011-09-08T19:35:39","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=10227"},"modified":"2011-09-08T15:36:19","modified_gmt":"2011-09-08T19:36:19","slug":"when-patients-band-together-far-from-a-disgrace","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2011\/09\/when-patients-band-together-far-from-a-disgrace.html","title":{"rendered":"When Patients Band Together: Far From a Disgrace"},"content":{"rendered":"<p>When it comes to news sites, I love scanning readers&#8217; comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me).<\/p>\n<p>One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how clinicians are tapping in to existing networks of patients. See: &#8220;<a href=\"http:\/\/online.wsj.com\/article\/SB10001424053111903352704576538754057145360.html\">When Patients Band Together<\/a>: Using Social Networks to Spur Research for Rare Diseases; Mayo Clinic Signs On.&#8221; Reader comments filled in blanks left by the article, which was a lovely introduction about one example of <a href=\"http:\/\/www.pewinternet.org\/Reports\/2011\/20-Mind-the-Gap.aspx\">peer-to-peer health care<\/a>, not a definitive guide. The article &#8212; and the comments &#8212; are having a significant impact, as this comment from Katherine Leon shows:<\/p>\n<blockquote><p>It has been a tremendously exciting week. We&#8217;ve heard all sorts of wonderful stories. An ER doc read the article in the morning, and that afternoon, realized he was treating a woman with SCAD &#8212; the first case he&#8217;d seen in 9 years. Women with recurrent SCAD are sharing the article with their doctors, and vice versa. Men are benefiting too; a cardiologist in Italy contacted Mayo about a man and woman being treated for SCAD in his cath lab. They are applying to the virtual registry.<\/p>\n<p>So as you say, the power of patient groups works!<\/p><\/blockquote>\n<p>Indeed, the power of patient groups is in full effect here, but so is the power of the mainstream media. <!--more-->The Wall Street Journal has a big megaphone and, in this article, used it to spread the word about this one patient network. Will it spark more coverage of other patient networks? Will it spark ideas for other clinicians and other patients who want to tap into the same zeitgeist of shared learning? Those are the questions that came to my mind as I read the comments and thought about the <a href=\"http:\/\/www.pewinternet.org\/Reports\/2011\/20-Mind-the-Gap\/Part-4\/Section-1.aspx\">roadblocks and opportunities<\/a> which face participatory medicine.<\/p>\n<p>I was also struck by the following sentence, which began a lengthy comment about the need for universal health care:<\/p>\n<blockquote><p>I find it a disgrace that in today&#8217;s world, these women who are and have been so gravely ill, have had to become their own advocates in order to improve their diagnoses.<\/p><\/blockquote>\n<p>A <strong>disgrace<\/strong>? That is not a word that I would ever use to describe people with expertise who work together on a shared problem. But let&#8217;s hear more from this commenter:<\/p>\n<blockquote><p>There should be a protocol within the doctor&#8217;s practice, to assure these women are given what they need. They should not have to resort to online articles for their information nor should they be in the position of having to &#8220;band together to spur medical research.&#8221; Their job should be to get well. Their doctors and elected officials should be doing the heavy lifting.<\/p><\/blockquote>\n<p>As I stated at the top, I welcome the chance to read people&#8217;s unvarnished comments since I always learn something. Here, I&#8217;m learning about how people outside the world of patient networks might view this story and how far we need to go to communicate the reality of the situation. I don&#8217;t disagree that in a perfect world, there would be a &#8220;protocol&#8221; to get people the care they need. But sadly that is not always the case. People often do need to study up, talk with fellow patients and caregivers, search online, and otherwise do the &#8220;heavy lifting&#8221; involved in health care decision-making. In fact, I worry about the people who do not have access to high-quality information they can understand. For starters, please see: <a href=\"http:\/\/www.pewinternet.org\/Reports\/2011\/HealthTopics\/Part-1\/Internet-access.aspx\">Internet access drives information access<\/a>.<\/p>\n<p>I&#8217;d love to hear what other people think about the WSJ article and comments. I&#8217;d also love to hear about other examples of pop-up comment threads related to peer-to-peer health care, participatory medicine, etc. What are you seeing? What are you learning?<\/p>\n<p>Please, um, leave a comment!<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>When it comes to news sites, I love scanning readers&#8217; comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me). One thread caught my eye recently. 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