{"id":8231,"date":"2011-01-18T11:45:29","date_gmt":"2011-01-18T15:45:29","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=8231"},"modified":"2011-01-21T22:45:34","modified_gmt":"2011-01-22T02:45:34","slug":"the-kind-of-thinking-to-look-for","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2011\/01\/the-kind-of-thinking-to-look-for.html","title":{"rendered":"The kind of thinking to look for"},"content":{"rendered":"<p>There are several stages in becoming an empowered, engaged, activated patient &#8211; a capable, responsible partner in getting good care for yourself, your family, whoever you&#8217;re caring for. One ingredient is to know what to expect, so you can tell when things seem right and when they don&#8217;t.<\/p>\n<p>Researching a project today, I came across an article published in 2006:\u00a0<a href=\"http:\/\/www.dana-farber.org\/pat\/patient\/patient-safety\/docs\/journey.pdf\" target=\"_blank\">Key Learning from the Dana-Farber Cancer\u00a0Institute\u2019s 10-Year Patient Safety Journey<\/a>.* This table shows the attitude you&#8217;ll find in an organization that has realized the challenges of medicine and is dealing with them realistically:<\/p>\n<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2011\/01\/Conway-DFCI-quality-thinking.png\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-8232 alignnone\" style=\"margin-right: 150px;\" title=\"\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2011\/01\/Conway-DFCI-quality-thinking.png\" alt=\"Table of before and after thinking about safety and quality at Dana Farber\" width=\"450\" height=\"356\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2011\/01\/Conway-DFCI-quality-thinking.png 539w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2011\/01\/Conway-DFCI-quality-thinking-300x237.png 300w\" sizes=\"auto, (max-width: 450px) 100vw, 450px\" \/><\/a><\/p>\n<p>&#8220;Errors are everywhere.&#8221; &#8220;Great care in a high-risk environment.&#8221; What kind of attitude is that??<\/p>\n<p>It&#8217;s accurate.<\/p>\n<p><!--more-->This work began after the death of\u00a0Boston Globe health columnist Betsy Lehman.\u00a0Long-time Bostonians will recall that she was killed in 1994 by an accidental overdose of chemo at Dana Farber. It shocked us to realize that a savvy patient like her, in one of the best places in the world, could be killed by such an accident. But she was.<\/p>\n<p>Five years later the Institute of Medicine&#8217;s report <em>To Err is Human<\/em> documented that such errors are in fact common &#8211; 44,000 to 98,000 \u00a0a year. It hasn&#8217;t gotten better: last November the US Inspector General released new findings that 15,000 Medicare patients are killed in US hospitals every <em>month<\/em>. That&#8217;s one every three minutes.<\/p>\n<p>A truth: <em>it&#8217;s\u00a0dangerous to cut people open or put chemicals in them<\/em>. Deny it and you&#8217;ll have plenty of accidents. Dana Farber got to work, and their thinking evolved from the ostrich-like &#8220;Everything&#8217;s great&#8221; to the more accurate &#8220;Excellent, not perfect&#8221;; from the ostrich-like &#8220;Errors are rare&#8221; to &#8220;Errors are everywhere&#8221; and &#8220;Great care in a high-risk environment.&#8221; A\u00a0key realization:<\/p>\n<blockquote>\n<div id=\"_mcePaste\">Oncology systems are too complex to expect\u00a0<strong>merely extraordinary people <\/strong>to\u00a0perform perfectly 100%\u00a0of the time.\u00a0<strong>Leadership has a responsibility<\/strong> to\u00a0put in place\u00a0<strong>systems <\/strong><strong>and the concomitant resources<\/strong> to support safe practice and to mitigate\u00a0<strong>the chances of error reaching patients<\/strong> and causing harm.<\/div>\n<\/blockquote>\n<p>Yes, like it or not, most providers today (doctors, nurses, staff) don&#8217;t have good error prevention systems in place &#8211; <em>they&#8217;re working without a net<\/em>, and many don&#8217;t even realize it. Heaven knows why it&#8217;s taking so long to fix this; all I know is that <strong>you can be a voice for change<\/strong>, at the point where it matters most to you: the care delivered to your family.<\/p>\n<p>Time has shown you won&#8217;t solve this by beating on people &#8211; in fact it denies what that quote says. (How often do you improve when you&#8217;re beaten?) Dana Farber&#8217;s response to errors evolved, leading successfully to improvements:<\/p>\n<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2011\/01\/Conway-DFCI-error-response.png\" data-rel=\"lightbox-image-1\" data-rl_title=\"\" data-rl_caption=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-8245\" style=\"margin-right: 150px;\" title=\"\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2011\/01\/Conway-DFCI-error-response.png\" alt=\"\" width=\"450\" height=\"373\" \/><\/a><\/p>\n<p>Look, <em>nobody <\/em>likes to realize that a patient is killed every three minutes in the US. (And that&#8217;s just Medicare.) That makes it hard to work on solutions. But you really, really want providers who are working on it.<\/p>\n<p>Participatory medicine can help. It&#8217;s an <strong>empowered partnership<\/strong>: we need to act as partners, and we need to expect our providers to <em>treat<\/em> us as partners. If they&#8217;re not treating you that way, ask them to. And if they won&#8217;t, think about leaving.\u00a0You really don&#8217;t want medical professionals who are arrogant about excellence and in denial about risk, and you don&#8217;t want to be in denial, either. Be a responsible partner.<\/p>\n<p>It&#8217;s best if you get that straight before a crisis hits. Have a talk with your providers; look for this approach. They may be surprised &#8211; work with them.<\/p>\n<p><sup><em>*Conway, J., D. Nathan, E. Benz, et al. Key learning from the Dana-Farber Cancer Institute\u2019s ten-year patient safety journey. In Am Soc Clin Oncol 2006 Ed Book. 42nd Annual Meeting, Atlanta, GA, 2006:615-619.<\/em><\/sup><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>There are several stages in becoming an empowered, engaged, activated patient &#8211; a capable, responsible partner in getting good care for yourself, your family, whoever you&#8217;re caring for. 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