{"id":1336,"date":"2009-02-14T20:37:35","date_gmt":"2009-02-15T01:37:35","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=1336"},"modified":"2009-02-14T20:37:35","modified_gmt":"2009-02-15T01:37:35","slug":"a-thousand-points-of-pain","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html","title":{"rendered":"A thousand points of pain"},"content":{"rendered":"

Cross-posted from my own blog, and then some<\/i><\/p>\n

E-patients, listen up. We have work to do, work we can <\/span>do.<\/p>\n

For the past year I’ve been learning what I can about the American healthcare system. I started this not as an “injured” patient but as someone who benefitted phenomenally from a brilliant cancer treatment. But when I read “e-Patients: How they can help us heal healthcare,” my eyes popped wide open with new possibilities. I started with no opinions except a new awareness that patients have much more to contribute than I’d thought.<\/p>\n

And I know we can do it – I’ve spent my career bringing user ideas into technology and, since 1989, into online communities.<\/p>\n

But I’ve recently approached (not reached) the conclusion that this one is not as amenable to transformation as I’m accustomed to. And I think I’ve got it figured out: there are a thousand points of pain resisting change.
\n
\nFirst, the challenge. Imagine you’re trying to untangle a massive, knotted ball of strings, and every time you tug on one, you hear a scream of pain.<\/p>\n

Now imagine that it’s an economic knot, and every scream is a billion dollars <\/span>of pain.<\/p>\n

And now imagine there are a thousand <\/span>strings in the knot … a thousand points of pain.<\/p>\n

That’s the reality we face in American healthcare. It’s a $2.4 trillion knot, severely dysfunctional in that it costs more and has poorer outcomes than any other developed country. Yet as Tom Daschle’s book Critical<\/i> details excruciatingly, every time we try to improve it by tugging on one part of the problem, powerful parties scream in pain, because they have a lot<\/i> of money at stake.<\/p>\n

(Strictly speaking, it’s 2400 points of pain, each a billion dollars. I’ll stick with the “thousand points of” meme.)<\/p>\n

$2.4 trillion is 40 times bigger than Microsoft and Google put together. Imagine if you had to try to fix something that big. How long would it take?<\/p>\n

Another view: it’s been said for years that healthcare costs 50% more here per person than in most developed nations. If we could fix that with the wave of a hand, our total spending would drop by one third. And that means we’d instantly cut out $800 billion of business<\/b> (1\/3 of $2.4 trillion). Somebody would be spending $800B less, and somebody would be getting $800B less.<\/p>\n

Citizens, that’s going to hurt. And a lot of people are going to fight against it – not because they don’t want better healthcare, but because they have a lot at stake, and it’s tangled.<\/p>\n

This is a big issue, but we do need to fix it: lives are at stake. Patients and their families are facing lethal diagnoses every day, and we\/they need the system to work better than it does today. And that brings up another way to look at “a thousand points of pain”: there are 1,000 cancer diagnoses in the US <\/span>every six hours<\/span>.<\/span>* We need<\/span> the system to serve us well. (And that’s not to mention other life-changing diagnoses: Cushing’s Syndrome, diabetes, and so many others. Did you know rare diseases are more common than the most<\/span> common disease? Rare Disease Day is Feb. 28.<\/a> Might be a thousand points of pain every hour<\/span> \u2013 in the US alone.)<\/p>\n

Personally, I’m starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.<\/p>\n

The thousand points of pain will work on their aspect of it, and we need<\/span> them to: I may be an e-patient, but I wouldn’t have dreamed up the high dosage Interleukin-2 treatment that stopped my disease.<\/p>\n

So let’s get moving \u2013 let’s show ’em how e-patients can git ‘er done! Let’s gather our facts, band together, create new tools, and spread the word to each other. And invite them<\/em> into our<\/em> world – if they can keep up. :)<\/p>\n

*1,444,920 new cases in 2007<\/a><\/span><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Cross-posted from my own blog, and then some E-patients, listen up. We have work to do, work we can do. For the past year I’ve been learning what I can about the American healthcare system. I started this not as an “injured” patient but as someone who benefitted phenomenally from a brilliant cancer treatment. But […]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false}}},"categories":[21,4,5,3,7,62,2],"tags":[],"coauthors":[8260],"jetpack_publicize_connections":[],"yoast_head":"\nA thousand points of pain - SPM Blog<\/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:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"A thousand points of pain - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"Cross-posted from my own blog, and then some E-patients, listen up. We have work to do, work we can do. For the past year I’ve been learning what I can about the American healthcare system. I started this not as an “injured” patient but as someone who benefitted phenomenally from a brilliant cancer treatment. But […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html\" \/>\n<meta property=\"og:site_name\" content=\"SPM Blog\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/participatorymedicine\" \/>\n<meta property=\"article:published_time\" content=\"2009-02-15T01:37:35+00:00\" \/>\n<meta name=\"author\" content=\"e-Patient Dave\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@s4pm\" \/>\n<meta name=\"twitter:site\" content=\"@s4pm\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"e-Patient Dave\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html#article\",\"isPartOf\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html\"},\"author\":{\"name\":\"e-Patient Dave\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/964cf120da8ac17067b46802eb561e5d\"},\"headline\":\"A thousand points of pain\",\"datePublished\":\"2009-02-15T01:37:35+00:00\",\"dateModified\":\"2009-02-15T01:37:35+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html\"},\"wordCount\":688,\"commentCount\":13,\"publisher\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#organization\"},\"articleSection\":[\"e-Patient resources\",\"Patient Networks\",\"Patient\/Doctor Co-Care\",\"Patients as Teachers\",\"Positive Patterns\",\"Reforming Healthcare\",\"Trends & Principles\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html\",\"url\":\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html\",\"name\":\"A thousand points of pain - SPM Blog\",\"isPartOf\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#website\"},\"datePublished\":\"2009-02-15T01:37:35+00:00\",\"dateModified\":\"2009-02-15T01:37:35+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/participatorymedicine.org\/epatients\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"A thousand points of pain\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#website\",\"url\":\"https:\/\/participatorymedicine.org\/epatients\/\",\"name\":\"SPM Blog\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/participatorymedicine.org\/epatients\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"en-US\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#organization\",\"name\":\"Society for Participatory Medicine\",\"url\":\"https:\/\/participatorymedicine.org\/epatients\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2017\/06\/spm-logo-13.png\",\"contentUrl\":\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2017\/06\/spm-logo-13.png\",\"width\":971,\"height\":269,\"caption\":\"Society for Participatory Medicine\"},\"image\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/logo\/image\/\"},\"sameAs\":[\"https:\/\/www.facebook.com\/participatorymedicine\",\"https:\/\/x.com\/s4pm\"]},{\"@type\":\"Person\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/964cf120da8ac17067b46802eb561e5d\",\"name\":\"e-Patient Dave\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/image\/bb6a6cea4b839aa865190891ced9fa91\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/9ea792f5ebe81e0279ab60420820d283?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/9ea792f5ebe81e0279ab60420820d283?s=96&d=mm&r=g\",\"caption\":\"e-Patient Dave\"},\"description\":\"\\\"e-Patient Dave\\\" deBronkart is a co-founder of our Society and past board chair. He survived a near-fatal kidney cancer by being an e-patient long before he'd heard the word. Today he evangelizes participatory medicine, patient empowerment, and patient data access as a keynote speaker and at epatientdave.com.\",\"sameAs\":[\"http:\/\/www.epatientdave.com\"],\"url\":\"https:\/\/participatorymedicine.org\/epatients\/author\/dave-debronkart\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"A thousand points of pain - SPM Blog","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html","og_locale":"en_US","og_type":"article","og_title":"A thousand points of pain - SPM Blog","og_description":"Cross-posted from my own blog, and then some E-patients, listen up. We have work to do, work we can do. For the past year I’ve been learning what I can about the American healthcare system. I started this not as an “injured” patient but as someone who benefitted phenomenally from a brilliant cancer treatment. But […]","og_url":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html","og_site_name":"SPM Blog","article_publisher":"https:\/\/www.facebook.com\/participatorymedicine","article_published_time":"2009-02-15T01:37:35+00:00","author":"e-Patient Dave","twitter_card":"summary_large_image","twitter_creator":"@s4pm","twitter_site":"@s4pm","twitter_misc":{"Written by":"e-Patient Dave","Est. reading time":"3 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html#article","isPartOf":{"@id":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html"},"author":{"name":"e-Patient Dave","@id":"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/964cf120da8ac17067b46802eb561e5d"},"headline":"A thousand points of pain","datePublished":"2009-02-15T01:37:35+00:00","dateModified":"2009-02-15T01:37:35+00:00","mainEntityOfPage":{"@id":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html"},"wordCount":688,"commentCount":13,"publisher":{"@id":"https:\/\/participatorymedicine.org\/epatients\/#organization"},"articleSection":["e-Patient resources","Patient Networks","Patient\/Doctor Co-Care","Patients as Teachers","Positive Patterns","Reforming Healthcare","Trends & Principles"],"inLanguage":"en-US","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html#respond"]}]},{"@type":"WebPage","@id":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html","url":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html","name":"A thousand points of pain - SPM Blog","isPartOf":{"@id":"https:\/\/participatorymedicine.org\/epatients\/#website"},"datePublished":"2009-02-15T01:37:35+00:00","dateModified":"2009-02-15T01:37:35+00:00","breadcrumb":{"@id":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/participatorymedicine.org\/epatients\/"},{"@type":"ListItem","position":2,"name":"A thousand points of pain"}]},{"@type":"WebSite","@id":"https:\/\/participatorymedicine.org\/epatients\/#website","url":"https:\/\/participatorymedicine.org\/epatients\/","name":"SPM Blog","description":"","publisher":{"@id":"https:\/\/participatorymedicine.org\/epatients\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/participatorymedicine.org\/epatients\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"en-US"},{"@type":"Organization","@id":"https:\/\/participatorymedicine.org\/epatients\/#organization","name":"Society for Participatory Medicine","url":"https:\/\/participatorymedicine.org\/epatients\/","logo":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/logo\/image\/","url":"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2017\/06\/spm-logo-13.png","contentUrl":"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2017\/06\/spm-logo-13.png","width":971,"height":269,"caption":"Society for Participatory Medicine"},"image":{"@id":"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/participatorymedicine","https:\/\/x.com\/s4pm"]},{"@type":"Person","@id":"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/964cf120da8ac17067b46802eb561e5d","name":"e-Patient Dave","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/image\/bb6a6cea4b839aa865190891ced9fa91","url":"https:\/\/secure.gravatar.com\/avatar\/9ea792f5ebe81e0279ab60420820d283?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/9ea792f5ebe81e0279ab60420820d283?s=96&d=mm&r=g","caption":"e-Patient Dave"},"description":"\"e-Patient Dave\" deBronkart is a co-founder of our Society and past board chair. He survived a near-fatal kidney cancer by being an e-patient long before he'd heard the word. Today he evangelizes participatory medicine, patient empowerment, and patient data access as a keynote speaker and at epatientdave.com.","sameAs":["http:\/\/www.epatientdave.com"],"url":"https:\/\/participatorymedicine.org\/epatients\/author\/dave-debronkart"}]}},"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/p8S1TQ-ly","jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/posts\/1336"}],"collection":[{"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/comments?post=1336"}],"version-history":[{"count":1,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/posts\/1336\/revisions"}],"predecessor-version":[{"id":1337,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/posts\/1336\/revisions\/1337"}],"wp:attachment":[{"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/media?parent=1336"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/categories?post=1336"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/tags?post=1336"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/coauthors?post=1336"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}