{"id":18725,"date":"2016-05-23T11:00:13","date_gmt":"2016-05-23T15:00:13","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=18725"},"modified":"2016-05-23T11:23:11","modified_gmt":"2016-05-23T15:23:11","slug":"openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2016\/05\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.html","title":{"rendered":"#OpenAPS is bearing big fruit, part 2: Quantified Self presentation in San Diego"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/Dana-w-OpenAPS-stage-team.jpg\" width=\"480\" height=\"204\" data-wp-pid=\"18729\" \/>A\u00a0truly significant moment in the history of medicine happened last Wednesday. I say that after\u00a0attending almost 500 conferences and policy meetings\u00a0in the past seven years, and I don&#8217;t say it lightly. Something many people think is impossible was presented live on stage: patients, informed and empowered by access to their data and access to tools, are <strong>successfully managing a complex and dangerous condition\u00a0&#8211; Type 1 diabetes &#8211; on their own.<\/strong><\/p>\n<p>Most of them will someday welcome the participation of clinicians, researchers, and industry, but their hashtag is: <strong>#WeAreNotWaiting.\u00a0<\/strong><br \/>\n<!--more--><\/p>\n<h3>Video of the session<\/h3>\n<p>Here&#8217;s video of the session, from the YouTube livestream archive. (If you don&#8217;t yet know about #OpenAPS, background information is below.)<\/p>\n<ul>\n<li><a href=\"https:\/\/www.youtube.com\/watch?v=FmNBUGe5JXY&amp;t=96m7s\" target=\"_blank\">The presentation<\/a>, introduced by Gary Wolf (@Agaricus), the head of the Quantified Self movement (47 minutes long)<\/li>\n<\/ul>\n<ul>\n<li>\n<div id=\"attachment_18740\" style=\"width: 223px\" class=\"wp-caption alignright\"><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/Larry-Smarr-at-Danas-talk-PSQH16-cropped.jpg\" target=\"_blank\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-18740\" class=\"wp-image-18740 \" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/Larry-Smarr-at-Danas-talk-PSQH16-cropped.jpg\" alt=\"Dr. Larry Smarr, reacting to this session with wonder in his eyes: \u201cIt\u2019s happening!\u201d\" width=\"213\" height=\"277\" data-wp-pid=\"18738\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/Larry-Smarr-at-Danas-talk-PSQH16-cropped.jpg 308w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/Larry-Smarr-at-Danas-talk-PSQH16-cropped-230x300.jpg 230w\" sizes=\"auto, (max-width: 213px) 100vw, 213px\" \/><\/a><p id=\"caption-attachment-18740\" class=\"wp-caption-text\">Dr. Larry Smarr, reacting to this session with wonder in his eyes: \u201cIt\u2019s happening!\u201d<\/p><\/div>\n<p><a href=\"http:\/\/Gary's bridge to Larry Smarr https:\/\/www.youtube.com\/watch?v=FmNBUGe5JXY&amp;t=143m30s\" target=\"_blank\">Gary&#8217;s wrap-up<\/a>, introducing co-host Dr. Larry Smarr.<\/li>\n<\/ul>\n<ul>\n<li><a href=\"https:\/\/www.youtube.com\/watch?v=FmNBUGe5JXY&amp;t=144m37s\" target=\"_blank\">Larry&#8217;s remarks<\/a>. This venerable scientist (<a href=\"https:\/\/www.google.com\/search?q=larry%20smarr\" target=\"_blank\">Google search<\/a>), TEDMED speaker and subject of\u00a0<em>The Atlantic&#8217;s\u00a0<\/em>article <a href=\"http:\/\/www.theatlantic.com\/magazine\/archive\/2012\/07\/the-measured-man\/309018\/\" target=\"_blank\">The Measured Man<\/a>, is seeing his vision materialize: here he said, &#8220;That was one of the most moving and important events on this stage <span class=\"aBn\" tabindex=\"0\" data-term=\"goog_1699333573\"><span class=\"aQJ\">in 10 years<\/span><\/span>. [significant pause] \u00a0It&#8217;s happening!&#8221; Look at his eyes.:-)<\/li>\n<\/ul>\n<h3>About #OpenAPS: The Open Artificial\u00a0Pancreas System<\/h3>\n<p>The tool they&#8217;re using is the\u00a0&#8220;Open Artificial\u00a0Pancreas System&#8221; cooked up by Dana Lewis and husband Scott Leibrand. As we <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2016\/05\/openaps-is-bearing-big-fruit-part-1-dana-lewiss-speech-at-oreillys-oscon.html\" target=\"_blank\">said here Friday<\/a>, Dana &#8220;has hacked into her CGM (continuous glucose monitor) and her insulin pump\u00a0and\u00a0grabbed the data feeds in the devices. Then,\u00a0using a $35 pocket-sized computer called the Raspberry Pi, she and then-boyfriend @ScottLeibrand (now husband) wrote software to\u00a0<em>manage her blood sugar better\u00a0<\/em>than it\u2019s ever been controlled before.&#8221;<\/p>\n<p>They\u00a0donated the software to open source, and at least 59 people are now doing it. This event was a gathering of Scott, Dana, and seven other users, to talk about their experiences, both the numbers and their\u00a0<em>feelings\u00a0<\/em>about what it&#8217;s like to have their life under better control.<\/p>\n<h3>&#8220;N of 1 &#8230; times 59&#8221;<\/h3>\n<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-2.jpg\" data-rel=\"lightbox-image-1\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-18731 alignnone\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-2.jpg\" alt=\"OpenAPS at QSPH_Dana 3 slides 2\" width=\"601\" height=\"338\" data-wp-pid=\"18731\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-2.jpg 2999w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-2-300x169.jpg 300w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-2-768x432.jpg 768w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-2-1024x576.jpg 1024w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-2-800x450.jpg 800w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-2-600x338.jpg 600w\" sizes=\"auto, (max-width: 601px) 100vw, 601px\" \/><\/a><br \/>\nFrom the beginning, Dana has been careful to say that her results are\u00a0<em><strong>not\u00a0<\/strong><\/em>a large-scale study &#8211; it&#8217;s &#8220;n of 1,&#8221; i.e. just one person doing this, so people shouldn&#8217;t draw conclusions from her experience. When others started doing it, they were all responsible about saying &#8220;now it&#8217;s &#8216;n of 1&#8217; times 2,&#8221; &#8220;times 3,&#8221; etc. Now it&#8217;s been more than a year, and as of this talk, it&#8217;s grown to n of 1 &#8230; times 59.<\/p>\n<p>Many have chosen to\u00a0upload their data to the cloud. They&#8217;ve logged 160,000 hours of closed-loop operation.<\/p>\n<h3>The &#8220;loopers&#8221; on stage<\/h3>\n<p>When Dana and Scott first did this in 2014 the devices were not connected &#8211; Scott&#8217;s program would read the device data and show her a number to enter into her digital insulin pump. In December 2014 they decided to try &#8220;closing the loop&#8221; &#8211; wiring the devices together. Now they call this &#8220;looping.&#8221;<\/p>\n<p>Some people think you need to be an IT nerd to do this. No. Here&#8217;s Dana&#8217;s report of who was on stage, their backgrounds, and when they started looping.<\/p>\n<ul>\n<li>First row, left to right:\n<ul>\n<li>Scott Leibrand &#8211; network engineer &#8211; doesn&#8217;t have diabetes, supports a looper (Dana) since December 2014<\/li>\n<li>Erzsi Szilagyi &#8211; PhD in chemistry &#8211; 9\/28\/15<\/li>\n<li>Mikel Curry &#8211; exercise physiology &amp; nutrition &#8211; 2\/1\/16<\/li>\n<li>Jason Curry &#8211; forest ranger &#8211; supports Mikel<\/li>\n<\/ul>\n<\/li>\n<li>Second row:\n<ul>\n<li>Mark Wilson &#8211; software engineer &#8211; 12\/28\/15<\/li>\n<li>Ben West &#8211; developer, OpenAPS toolkit builder &#8211; 9\/28\/15<\/li>\n<li>Jason Calabrese &#8211; software developer, son Andrew has diabetes &#8211; 11\/14\/15<\/li>\n<li>Jim Matheson &#8211; marketing &#8211; 1\/25\/16<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<h3>Here, patient experience gets real &#8211; at\u00a0gut level<\/h3>\n<p>During Q&amp;A, listen for the <em>feelings\u00a0<\/em>some of the newer loopers express about\u00a0living w T1D (type 1 diabetes) &#8211; the constant knowledge that you could die on any day if your disease got out of control. Two of them mention, with mystified expressions, how things they&#8217;d learned to\u00a0<em>assume\u00a0<\/em>were permanent might not be.<\/p>\n<p>Listen to how they talk about being able to\u00a0<em>sleep\u00a0<\/em>better, because of the increased confidence they now have.\u00a0And imagine the experience Jason mentioned of another looper parent, whose child is one year old with this disease &#8230; and how they must feel when they go to\u00a0sleep.<\/p>\n<p>One of my top moments is when the audience asks about safety, and Mikel says she&#8217;s had a pump for 15 years and she&#8217;s\u00a0<em>never\u00a0<\/em>felt as safe as she does now, after three months of looping.<\/p>\n<p>Listen also for their feelings about hearing, year after year after year, that the industry would give them a product like this in just a few years more. Then, #WeAreNotWaiting.<\/p>\n<p>And look for the spot where they say they can&#8217;t do this with the newest devices, because\u00a0manufacturers removed the commands\u00a0that make this possible. (Dana emailed: &#8220;This is because of a security &#8216;vulnerability&#8217; that was discovered years ago. But [in our view] the relative net risk of this feature is far outweighed by the net benefit of providing users the ability to control their own devices, as discussed here.&#8221;) Can we get to a future where patients have a voice in such decisions? (Who has more at stake?)<\/p>\n<h3>The arriving future &#8211; as predicted<\/h3>\n<p>This is such a signal moment.<\/p>\n<ul>\n<li>Ten years ago the last chapter of &#8220;Doc Tom&#8221; Ferguson&#8217;s manifesto was titled &#8220;The Autonomous Patient and the Reconfiguration of Medical Knowledge.&#8221;\u00a0Sound familiar?<\/li>\n<li>Our Society for Participatory Medicine defines participatory medicine as a movement in which &#8220;patients shift from being mere passengers to responsible drivers of their health.&#8221;\u00a0Sound familiar?<\/li>\n<li>In 2008, at the Connected Health conference in Boston, internet visionary Clay Shirky said, &#8220;The patients on ACOR don&#8217;t need our permission, and they don&#8217;t need our help.&#8221;<\/li>\n<\/ul>\n<p>Clay&#8217;s words snapped back into my consciousness this day, when Larry Smarr said:<\/p>\n<blockquote><p>&#8220;&#8230;\u00a0the incredible inventiveness, the incredible caring that individuals have to make the world different &#8211;\u00a0<em>whether they have got permission or not<\/em> &#8211; that&#8217;s the force that is being unleashed.&#8221;<\/p><\/blockquote>\n<p>Early in his manifesto\u00a0Ferguson quoted futurist William Gibson: &#8220;The future is already here \u2014 it&#8217;s just not very evenly distributed.&#8221; Indeed, similar projects are proposed for other diseases. Cystic fibrosis is mentioned here, and SPM member Hugo Campos has been mentioned <a href=\"http:\/\/www.e-patients.net\/?s=hugo+campos\" target=\"_blank\">many times on this blog<\/a>, in print and on NPR for his desire to access the data from the device that&#8217;s wired into his heart &#8230; to better manage his health, without being limited to what industry provides.<\/p>\n<p>Next month\u00a0Dana Lewis is presenting a poster at the American Diabetes Association&#8217;s annual scientific conference in New Orleans. This is going to be\u00a0<em>really\u00a0<\/em>interesting. Because lives are at stake, and when the people with the problem get access to tools &#8211; and their data &#8211; they can take their care in whichever direction they want. As a parting thought, here are a few of the lives this project is already touching:<\/p>\n<div><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-18732 alignnone\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-3.jpg\" alt=\"OpenAPS at QSPH_Dana 3 slides 3\" width=\"601\" height=\"338\" data-wp-pid=\"18732\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-3.jpg 2999w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-3-300x169.jpg 300w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-3-768x432.jpg 768w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-3-1024x576.jpg 1024w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-3-800x450.jpg 800w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/OpenAPS-at-QSPH_Dana-3-slides-3-600x338.jpg 600w\" sizes=\"auto, (max-width: 601px) 100vw, 601px\" \/><\/div>\n<div>Power to the people, as we hippies used to say.<\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A\u00a0truly significant moment in the history of medicine happened last Wednesday. I say that after\u00a0attending almost 500 conferences and policy meetings\u00a0in the past seven years, and I don&#8217;t say it [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"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","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[171,35,7344,5,3,4986,59,7,62,2],"tags":[7871],"coauthors":[],"class_list":["post-18725","post","type-post","status-publish","format-standard","hentry","category-e-patient-stories","category-key-people","category-patient-conference-participation","category-ptdoc-co-care","category-pts-as-teachers","category-pm-tech","category-policy-issues","category-positive-patterns","category-reforming-healthcare","category-trendsprinciples","tag-feelings"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>#OpenAPS is bearing big fruit, part 2: Quantified Self presentation in San Diego - 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\/2016\/05\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"#OpenAPS is bearing big fruit, part 2: Quantified Self presentation in San Diego - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"A\u00a0truly significant moment in the history of medicine happened last Wednesday. I say that after\u00a0attending almost 500 conferences and policy meetings\u00a0in the past seven years, and I don&#8217;t say it [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/participatorymedicine.org\/epatients\/2016\/05\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.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=\"2016-05-23T15:00:13+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2016-05-23T15:23:11+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/05\/Dana-w-OpenAPS-stage-team.jpg\" \/>\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=\"6 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2016\\\/05\\\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.html#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2016\\\/05\\\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.html\"},\"author\":{\"name\":\"e-Patient Dave\",\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/#\\\/schema\\\/person\\\/964cf120da8ac17067b46802eb561e5d\"},\"headline\":\"#OpenAPS is bearing big fruit, part 2: Quantified Self presentation in San Diego\",\"datePublished\":\"2016-05-23T15:00:13+00:00\",\"dateModified\":\"2016-05-23T15:23:11+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2016\\\/05\\\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.html\"},\"wordCount\":1197,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2016\\\/05\\\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.html#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/wp-content\\\/uploads\\\/sites\\\/3\\\/2016\\\/05\\\/Dana-w-OpenAPS-stage-team.jpg\",\"keywords\":[\"FEELINGS\"],\"articleSection\":[\"e-Patient stories\",\"Key People\",\"Patient Conference Participation\",\"Patient\\\/Doctor Co-Care\",\"Patients as Teachers\",\"PM Tech\",\"Policy Issues\",\"Positive Patterns\",\"Reforming Healthcare\",\"Trends &amp; Principles\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2016\\\/05\\\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.html#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2016\\\/05\\\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.html\",\"url\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2016\\\/05\\\/openaps-is-bearing-big-fruit-part-2-quantified-self-presentation-in-san-diego.html\",\"name\":\"#OpenAPS is bearing big fruit, part 2: Quantified Self presentation in San Diego - 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