{"id":6318,"date":"2010-12-23T15:41:47","date_gmt":"2010-12-23T14:41:47","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=6318"},"modified":"2014-07-29T09:36:42","modified_gmt":"2014-07-29T08:36:42","slug":"%e2%80%9ce-patient-dave%e2%80%9d-debronkart-back-to-the-future-tom-ferguson%e2%80%99s-%e2%80%9ce-patients%e2%80%9d-emerge-in-shared-decision-making","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2010\/12\/23\/%e2%80%9ce-patient-dave%e2%80%9d-debronkart-back-to-the-future-tom-ferguson%e2%80%99s-%e2%80%9ce-patients%e2%80%9d-emerge-in-shared-decision-making\/","title":{"rendered":"\u201ce-Patient Dave\u201d deBronkart: Back to the future: Tom Ferguson\u2019s \u201ce patients\u201d emerge in shared decision-making"},"content":{"rendered":"<p>I\u2019m an e-patient: empowered, engaged, equipped, enabled. Diagnosed in 2007 with late stage kidney cancer, I used the internet in every way possible to help my cause, in concert with world class physicians at Boston\u2019s Beth Israel Deaconess Medical Center. Today I am well.<\/p>\n<p>A year after my diagnosis I discovered e-patients.net, a blog started by \u201cDoc Tom\u201d Ferguson in 2006. Ferguson authored several <em>BMJ<\/em> pieces, including \u201c<a href=\"http:\/\/www.bmj.com\/content\/321\/7269\/1129\">Online patient-helpers and physicians working together: a new partnership for high quality health care.<\/a>\u201d It sounds like a vision of the future, but it appeared in November 2000 \u2013 ten years ago.<!--more--><\/p>\n<p>Ferguson had advocated since the 1970s that patients should be engaged in their care. He was thrilled when the internet gave patients access to information and to each other, and he coined the term e-patient, defining it with those four \u201ce\u201ds. His work is summarised in a 122 page white paper published posthumously on e-patients.net. I read it, saw myself, and took the online moniker \u201ce-Patient Dave\u201d as I started blogging about it.<\/p>\n<p>A decade after his first <em>BMJ<\/em> piece, Ferguson\u2019s vision is being realized. E-patient speakers appeared frequently in 2010 at medical conferences, and the Institute for Healthcare Improvement\u2019s Forum this month hosted a patient summit.<\/p>\n<p>In our Salzburg seminar I realised that informed, engaged, thinking patients can be an important force in informed decision making. In my own case, I quickly learned from my kidney cancer patient community (ACOR.org) about my best treatment options: \u201cOnly one thing approximates a cure: high dosage interleukin.\u201d \u201cMost hospitals don\u2019t offer it \u2013 find one that does. Here are phone numbers of New England doctors who do.\u201d \u201cDon\u2019t let them give you anything else first \u2013 it may disqualify you for interleukin.\u201d \u201cThe side effects are rough but a specialist hospital knows how to manage them.\u201d Vital information \u2013 but most patients never hear about interleukin as a treatment option. They may be offered informed consent (to an option chosen by their physician), but they\u2019re certainly not fully aware of all the available options.<\/p>\n<p>As it happens I was already referred to one of the recommended oncologists, Dr. David McDermott\u00a0 \u2013 but as treatment approached, I reached out again to ACOR to prepare, gathering first-hand stories about the side effects. Today my oncologist says \u201cThere\u2019s no question the interleukin killed the tumors, but I\u2019m not sure you could have tolerated enough interleukin to make a difference if you weren\u2019t so motivated and hadn\u2019t educated yourself on what to expect.\u201d<\/p>\n<p>It\u2019s my fervent hope that in the coming year, all of us will recognize the reality expressed in the title of our seminar: that patients are the greatest untapped resource \u2013 especially in medical decision making.<\/p>\n<p><em><strong>\u201ce-Patient Dave\u201d deBronkart<\/strong>\u2019s story is documented in his 2010 book, <\/em>Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it)<em>. He now works full time in advocating for and developing the practices of patient engagement through public speaking and research projects. His website is http:\/\/epatientdave.com. <\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>I\u2019m an e-patient: empowered, engaged, equipped, enabled. Diagnosed in 2007 with late stage kidney cancer, I used the internet in every way possible to help my cause, in concert with [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2010\/12\/23\/%e2%80%9ce-patient-dave%e2%80%9d-debronkart-back-to-the-future-tom-ferguson%e2%80%99s-%e2%80%9ce-patients%e2%80%9d-emerge-in-shared-decision-making\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[223],"tags":[1904],"class_list":["post-6318","post","type-post","status-publish","format-standard","hentry","category-guest-bloggers","tag-salzburg-symposium"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u201ce-Patient Dave\u201d deBronkart: Back to the future: Tom Ferguson\u2019s \u201ce patients\u201d emerge in shared decision-making - The BMJ<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/bmj\/2010\/12\/23\/\u201ce-patient-dave\u201d-debronkart-back-to-the-future-tom-ferguson\u2019s-\u201ce-patients\u201d-emerge-in-shared-decision-making\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u201ce-Patient Dave\u201d deBronkart: Back to the future: Tom Ferguson\u2019s \u201ce patients\u201d emerge in shared decision-making - The BMJ\" \/>\n<meta property=\"og:description\" content=\"I\u2019m an e-patient: empowered, engaged, equipped, enabled. 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