{"id":18993,"date":"2016-08-08T08:52:42","date_gmt":"2016-08-08T12:52:42","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=18993"},"modified":"2016-08-08T17:05:13","modified_gmt":"2016-08-08T21:05:13","slug":"e-patients-as-journal-authors-sean-ahrens-self-experiment-published-in-a-major-journal","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2016\/08\/e-patients-as-journal-authors-sean-ahrens-self-experiment-published-in-a-major-journal.html","title":{"rendered":"e-Patients as journal authors: Sean Ahrens self-experiment published in a major journal"},"content":{"rendered":"<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/08\/Sean-article.jpg\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-18994 alignleft\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/08\/Sean-article.jpg\" alt=\"Sean Ahrens article in American Journal of Gastroenterology\" width=\"416\" height=\"586\" border=\"1\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/08\/Sean-article.jpg 481w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/08\/Sean-article-213x300.jpg 213w\" sizes=\"auto, (max-width: 416px) 100vw, 416px\" \/><\/a><\/p>\n<p><em>We&#8217;d love to start a list of other patient-authored papers and posters &#8211; let us know in the comments! We know of Dana M. Lewis &amp; Scott Leibrand&#8217;s <a href=\"https:\/\/openaps.org\/2016\/06\/11\/real-world-use-of-open-source-artificial-pancreas-systems-poster-presented-at-american-diabetes-association-scientific-sessions\/\" target=\"_blank\">poster about #OpenAPS<\/a> in June &#8211; who else??<\/em><\/p>\n<p>We&#8217;ve written before about e-patient <a href=\"https:\/\/participatorymedicine.org\/epatients\/?s=crohnology\">Sean Ahrens and the Crohnology community<\/a> he started. \u00a0In my view the most important post of the series was four years ago:\u00a0<a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2012\/09\/crossing-some-threshold-the-e-patient-movement-enters-wave-2.html\" target=\"_blank\">Crossing a threshold: the e-Patient movement enters wave 2<\/a>. That post linked to an article in\u00a0<em>Fast Company\u00a0<\/em>(a business magazine!) about Sean.<\/p>\n<p>Now, could this be wave 3? We&#8217;re starting to see e-patients as authors\u00a0in medical journals.\u00a0<em>That\u00a0<\/em>is a culture change, folks.<\/p>\n<p>In this case it&#8217;s not just an opinion piece &#8211; Sean devised and conducted an experiment on himself! Here&#8217;s his Facebook post the other day on it:<\/p>\n<hr \/>\n<p>So I think this is kind of big news: I just got published (in print) in a major medical journal, the American Journal of Gastroenterology (AJG)!<\/p>\n<p><!--more-->I submitted a 1500-word scientific report of the self-tracking experiment I did on myself taking pig whipworm (an intestinal parasite) for my Crohn\u2019s in 2010. For this experiment, I had mail-ordered the pig whipworm from the internet, shipped via Thailand in small vials. Yeah I know that sounds kinda crazy. I did this experiment fro<span class=\"text_exposed_show\">m March &#8211; August 2010, intentionally ingesting TSO (<em>Trichuris Suis Ova<\/em>), a non-FDA approved treatment, every two weeks, and recorded my changing symptoms in a digital tracker I built for myself.<\/span><\/p>\n<div class=\"text_exposed_show\">\n<p>While I\u2019ve given talks on this self-experiment at various health and medical conferences, the detailed report of my results have remained unpublished up until now. And they are published in a major medical journal by Nature! That feels pretty good <span class=\"_4mcd\">;)<\/span>!<\/p>\n<p>Unfortunately, the way medical journal publishing works is that unless you have paid access to <em>Nature<\/em>, you cannot read my publication (entitled \u201c<a href=\"http:\/\/www.nature.com\/ajg\/journal\/v111\/n7\/full\/ajg2016193a.html\" target=\"_blank\">Opening (and Swallowing) A Can of Worms to Treat My Crohn\u2019s Disease<\/a>\u201d). And legally I have given up copyright ownership of my submission to Nature (kind of a bummer, right?) so I can\u2019t share it with you here; however, after 6 months from when it appeared in print (July 2016), I have rights to re-publish it online for you to view\u2014which I will do, in December 2016.<\/p>\n<p>Since you can\u2019t read it now, I\u2019ll give you the summary:<\/p>\n<p>During 2010, my Crohn\u2019s symptoms were very active. During most all of the experiment taking pig whipworm, it appeared the whipworm was not helping: my symptoms remained very active. Because taking care of my health was priority #1 and doing the experiment was priority #2, I started a dramatically strict diet (called the Specific Carb Diet) about 2\/3 the way into my study because I needed to do anything to quell my symptoms; I continued this diet for years afterward. Three months after I stopped taking the pig whipworm (and seven months after starting the diet), my symptoms dramatically improved (and nearly disappeared); in November 2013 my physician declared after a colonoscopy that my Crohn\u2019s showed signs of \u201cremission with no visible inflammation\u201d. I believe that one of the two (the diet or the whipworm) helped bring me into remission, but I cannot say which one, or if it was the combination of the two.<\/p>\n<p>As you may know, I think it&#8217;s super important for the advancement of medical knowledge for patients who do self-experiments (or just treatment variations, diets, etc) on themselves to record and publish those so we can build up a resource of patient&#8217;s real-world (and otherwise unrecorded) collective knowledge. This will help medical information to flow from patients up.<\/p>\n<p>That\u2019s my report for now, and I plan on publishing the 1500-word full report once I have rights to do so in December 2016.<\/p>\n<hr \/>\n<p>In a comment he added: &#8220;Luckily the AJG now solicits these kind of studies via their \u201cRed Section\u201d which is dedicated to patient submissions. I\u2019m not sure a lot of patients are submitting self-tracking study reports like this, but more should. And hopefully more journals are opening up to accept from patients even if they don\u2019t have PhDs.&#8221; (Sean himself doesn&#8217;t &#8211; &#8220;just&#8221; a bachelor&#8217;s degree.)<\/p>\n<p>I hadn&#8217;t heard of a journal having a section dedicated to patient submissions &#8211; how great! Why doesn&#8217;t everyone do that??<\/p>\n<p>&nbsp;<\/p>\n<\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>We&#8217;d love to start a list of other patient-authored papers and posters &#8211; let us know in the comments! We know of Dana M. 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