{"id":2718,"date":"2009-06-23T19:31:30","date_gmt":"2009-06-24T00:31:30","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=2718"},"modified":"2009-06-23T19:36:09","modified_gmt":"2009-06-24T00:36:09","slug":"no-political-power-center-for-regular-people","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/06\/no-political-power-center-for-regular-people.html","title":{"rendered":"&#8220;No political power center for regular people&#8221;<br>in health reform"},"content":{"rendered":"<p>Aliya Sternstein writes for NextGov, a site devoted to &#8220;technology and the business of government.&#8221; We spoke last week for her piece about <a href=\"http:\/\/www.nextgov.com\/nextgov\/ng_20090622_7355.php?oref=search\" target=\"_blank\">the White House&#8217;s use of social media<\/a>. There are some people who, when you speak with them, the conversation goes to new places. This was one of those times.<\/p>\n<p><!--more-->It was a provocative talk, because although &#8220;everyone knows&#8221; the Obama administration has mastered social media, there&#8217;s a real question of whether we out here actually <em>use <\/em>those blogs. And it had never even occurred to me to go there &ndash; I have about six zillion other blogs I want to keep up on, and besides, to me social media is all about <em>conversations<\/em>, not one-way publishing or one-way reading. I commented that the thing about the administration isn&#8217;t just that they publish, it&#8217;s that they seem to <em>listen<\/em>.<\/p>\n<p>Anyway, when Aliya published another piece today, <a href=\"http:\/\/www.nextgov.com\/nextgov\/ng_20090623_2200.php\" target=\"_blank\">Administration urged to engage public on e-health records,<\/a> I took a look. She spoke with Michael Painter of the Robert Wood Johnson Foundation, and the famous Brian Klepper of Healthcare Performance, inc. And something Brian said stuck in my craw:<\/p>\n<blockquote><p>In my view, there are parallel universes of health care reform discussion. One is what everyday people are saying and thinking. . . .And, yes, the White House hopes people will visit its <a href=\"http:\/\/www.healthreform.gov\/\" target=\"_blank\">site on reform<\/a> and weigh in. <strong>The core problem here is that there is no political\u00a0power\u00a0center for regular people to glom on to health care reform.&#8221;<\/strong><\/p><\/blockquote>\n<p><em>(Emphasis added.)<\/em><\/p>\n<p>Think about that: <strong>the only people who will live or die, depending on how reform goes, have no power center in Washington.<\/strong><\/p>\n<p>It took me right back to Craig Stoltz&#8217;s excellent post last night about the new Declaration of Health Data Rights: <a href=\"http:\/\/2ohreally.com\/2009\/06\/declaration-of-health-data-rights\/ \" target=\"_blank\"><strong>Declaration of Health Data Rights: Aux Barricades!<\/strong><\/a><\/p>\n<p>Craig&#8217;s point is &#8220;The most visible and active &#8216;stakeholders&#8217; in discussions about HIT so far have been &#8230; commercially self-interested players who may not [or, to be fair, may] have patient rights &#8230; top-of-mind.&#8221;<\/p>\n<p>As I often say, I have nothing against business; I&#8217;m in business. But I assert that <strong>something is terribly broken if we &ndash; the ones who stand to live or die depending on this issue &ndash; have no power center to &#8220;glom on to.&#8221;<\/strong><\/p>\n<p>Think about it: all we hear about from DC is what the AMA wants, what pharma thinks, and so on. <strong>Where the hell is the voice of the patient?<\/strong><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Aliya Sternstein writes for NextGov, a site devoted to &#8220;technology and the business of government.&#8221; We spoke last week for her piece about the White House&#8217;s use of social media. 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