{"id":2806,"date":"2009-07-08T12:44:04","date_gmt":"2009-07-08T17:44:04","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=2806"},"modified":"2009-07-08T12:45:33","modified_gmt":"2009-07-08T17:45:33","slug":"participatory-medicine-at-pdf09-can-we-get-a-do-over","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/07\/participatory-medicine-at-pdf09-can-we-get-a-do-over.html","title":{"rendered":"Participatory Medicine at PdF09: Can we get a do-over?"},"content":{"rendered":"<p>The poli-tech tribe gathered in New York last week for the <a href=\"http:\/\/personaldemocracy.com\/pdf-conference\/personal-democracy-forum-conference\">Personal Democracy Forum<\/a> and, as Craig Newmark put it, welcomed &#8220;<a href=\"http:\/\/www.cnewmark.com\/2009\/05\/nerd-i-mean-vulcan-salute-explained-by-nimoy-and-a-little-re-pon-farr.html\">our new nerd overlords<\/a>.&#8221;<\/p>\n<p><a href=\"http:\/\/www.edventure.com\/\">Esther Dyson<\/a>, <a href=\"http:\/\/www.patientslikeme.com\/members\/view\/71\">Jamie Heywood<\/a>, Rep. <a href=\"http:\/\/www.house.gov\/nadler\/\">Jerry Nadler<\/a> (D-NY), and <a href=\"http:\/\/www.pewinternet.org\/Experts\/Susannah-Fox.aspx\">I<\/a> were asked to take on a breakout panel entitled, &#8220;From Participatory Politics to Participatory Medicine: The Coming Revolution in Health Care.&#8221; Cool, right?<\/p>\n<div id=\"attachment_2809\" style=\"width: 310px\" class=\"wp-caption center\"><a href=\"http:\/\/www.flickr.com\/photos\/jerrynadler\/3674887115\/\" target=\"_blank\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-2809\" class=\"size-medium wp-image-2809\" title=\"pdf09_nadler\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2009\/07\/pdf09_nadler-300x225.jpg\" alt=\"Jerry Nadler joins Esther Dyson, Jamie Heywood and Susannah Fox to talk about &quot;From Participatory Politics to Participatory Medicine&quot; at Personal Democracy Forum 2009 \" width=\"300\" height=\"225\" \/><\/a><p id=\"caption-attachment-2809\" class=\"wp-caption-text\"><I>Esther Dyson, Jamie Heywood, Jerry Nadler, and Susannah Fox<\/I><\/p><\/div>\n<p>Via email, Esther suggested we skip the usual speeches and just tell the audience the questions we\u2019d like to be asked and have a truly participatory session:<\/p>\n<ul>\n<li> Jamie was going to talk about PatientsLikeMe, HealthDataRights.org, and the power of patients to take control of their own data.<\/li>\n<li> Esther was going to ask how openness, transparency, measurement, and sharing of data affect health care.<\/li>\n<li>I was going to talk about which tech trends might forecast higher (or lower) levels of involvement by all Americans in both participatory medicine and participatory democracy.<\/li>\n<\/ul>\n<p>Then Rep. Nadler arrived and said he\u2019d been told that this was a panel about health care reform. Well, kind of. Not really. But we had to get started.<\/p>\n<p>It didn\u2019t go well. <!--more--><\/p>\n<p>Check the tweets:<\/p>\n<blockquote><p><a href=\"http:\/\/twitter.com\/RadioBabe\">@RadioBabe<\/a> Interesting panelists, interesting ideas, but overall this health care panel at #pdf09 has been awkward and disappointing.<\/p>\n<p><a href=\"http:\/\/twitter.com\/lolamacc\">@lolamacc<\/a> health care panel = very scattered discussion with little focus, too many issues, little really that was clearly conveyed<\/p>\n<p><a href=\"http:\/\/twitter.com\/mpesce\">@mpesce<\/a> Wasn&#8217;t this panel supposed to be about participatory medicine? I don&#8217;t see a whole lot of that going on here.<\/p><\/blockquote>\n<p>Ouch! Nobody was <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2009\/01\/doing-our-best-to-blow-your-minds-emerging-trends-in-chronic-disease-care.html\">nauseated<\/a>, right?<\/p>\n<p>When I described the situation to <a href=\"http:\/\/www.thehealthcentralnetwork.com\/team.html\">Chris Schroeder<\/a>, CEO of HealthCentral, he reassured me: &#8220;Your panel didn\u2019t fail. It sounds like the audience got to see first-hand just how far technology remains removed from the heart of the health care policy debate in Washington.&#8221;<\/p>\n<p>I\u2019m even more comforted by the tao of <a href=\"http:\/\/www.tedeytan.com\/\">Ted Eytan<\/a> which teaches that &#8220;no communication is ever over&#8221; and &#8220;everything gets more accurate with more interaction.&#8221; <\/p>\n<p>Judging from the majority of tweets, we did get quite a few points across, so let&#8217;s build on that:<\/p>\n<p>Read more about Esther\u2019s <a href=\"http:\/\/www.huffingtonpost.com\/esther-dyson\/the-quantification-of-eve_b_127288.html\">quantification of everything<\/a> and the principles of <a href=\"http:\/\/www.healthdatarights.org\/\">HealthDataRights.org<\/a>. Where do you come down?<\/p>\n<p>Check out <a href=\"http:\/\/www.patientslikeme.com\/\">PatientsLikeMe<\/a>. Jamie says <a href=\"http:\/\/www.nytimes.com\/2008\/03\/23\/magazine\/23patients-t.html?_r=2\">people who use it will live longer<\/a>; people who don\u2019t won\u2019t. What do you think?<\/p>\n<p>Dr. Google is a <a href=\"http:\/\/www.bmj.com\/cgi\/content\/abstract\/bmj.39003.640567.AEv1?hrss=1\">pretty good diagnostician<\/a>, most people say online health info is <a href=\"http:\/\/www.pewinternet.org\/Reports\/2009\/8-The-Social-Life-of-Health-Information\/05-The-Impact-of-Online-Health-Resources\/2-42-of-adults-say-they-or-someone-they-know-has-been-helped-by-online-health-advice.aspx?r=1\">helpful not harmful<\/a>, but access is <a href=\"http:\/\/www.pewinternet.org\/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?r=1\">unevenly distributed<\/a>. What\u2019s up with that?<\/p>\n<p>Please leave a comment here, on <a href=\"http:\/\/twitter.com\/SusannahFox\">Twitter<\/a>, point me to another venue, or otherwise continue the conversation.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The poli-tech tribe gathered in New York last week for the Personal Democracy Forum and, as Craig Newmark put it, welcomed &#8220;our new nerd overlords.&#8221; Esther Dyson, Jamie Heywood, Rep. 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