{"id":5696,"date":"2010-05-13T13:50:31","date_gmt":"2010-05-13T18:50:31","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=5696"},"modified":"2010-05-13T13:50:31","modified_gmt":"2010-05-13T18:50:31","slug":"participant-entrepreneurs-innovating-toward-better-health","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html","title":{"rendered":"Participant-Entrepreneurs: Innovating Toward Better Health"},"content":{"rendered":"<p>Nikolai Kirienko, Crohnology.MD Project Director, is setting a new standard for transparency in research and innovation as he <a href=\"http:\/\/projecthealthdesign.typepad.com\/project_health_design\/crohnologymd\/\" target=\"_blank\">blogs <\/a>about his work with <a href=\"http:\/\/www.projecthealthdesign.org\/\" target=\"_blank\">Project HealthDesign<\/a>:<\/p>\n<blockquote><p>On days where I could have benefited from the feedback of [Observations of Daily Living] the most, I was  the least likely to be recording them. Why? On the worst days, I was literally  too nauseated to answer my phone when it rang, let alone futz with one of the  three Crohn&#8217;s symptom tracking apps on my iPhone &#8211; none of which even  acknowledged my nausea and related gems as symptoms.<\/p><\/blockquote>\n<p>But even as his personal health deteriorates (and hopefully improves!) Kirienko is recording the lessons he&#8217;s learning about health care social media:<\/p>\n<blockquote><p><strong>Promising practice: <\/strong><br \/>\nWe need to rethink our ODLs  reporting methods. The obvious solution: include the ability for caregivers\/very  special friends to report ODLs. However, I live alone for weeks at a time. The  less obvious solution: make it impossible not to report. As in, no status is in  fact, a status.<!--more--><\/p><\/blockquote>\n<p>Another really interesting insight relates to the fact that a small group of patients account for much of health care costs in the U.S.:<\/p>\n<blockquote><p><strong>Contextual barriers to clinical collaboration via ODLs: <\/strong><br \/>\nThese solutions are most relevant to the 5% of a given  patient population that have multiple co-occurring conditions and tend to  account for over 50% of the cost of annual care. (see Medicare and complex  conditions)<\/p>\n<p><strong>Promising practice: <\/strong><br \/>\nWe have to design for the 95%  without sacrificing the 5%&#8217;ers for whom this technology has the potential to be  truly life saving. This is where I think a multi-tiered approach to ODLs makes  sense: maintain a lightweight interaction limited to the bare minimum of ODLs  with the least effort to record, while revealing more granular reporting of an  expanded ODLs set as needed for those who can use them.<\/p><\/blockquote>\n<p>His insights go straight to one of the points I make <a href=\"http:\/\/www.pewinternet.org\/Presentations\/2009\/30--The-Patient-is-In.aspx\" target=\"_blank\">all the time<\/a>: Patients and the people who love them are not just your target audience,  but your colleagues. They are a resource for innovation and knowledge.<\/p>\n<p>Reading his entries also makes me think there is a new category of e-patient: the participant-entrepreneur. Not content to stand by and let other people innovate for them, these people are creating the services, devices, and communities they need.<\/p>\n<p>Other people I&#8217;d put in the participant-entrepreneur category:\u00a0 <a href=\"http:\/\/twitter.com\/jensmccabe\">Jen McCabe<\/a> of <a href=\"http:\/\/getupandmove.me\/\" target=\"_blank\">Contagion Health<\/a>, <a href=\"http:\/\/twitter.com\/accarmichael\" target=\"_blank\">Alexandra Carmichael<\/a> of <a href=\"http:\/\/www.curetogether.com\/\" target=\"_blank\">CureTogether<\/a>, <a href=\"http:\/\/twitter.com\/DiabetesMine\" target=\"_blank\">Amy Tenderich<\/a> of the <a href=\"http:\/\/www.diabetesmine.com\/designcontest\" target=\"_blank\">DiabetesMine Design Challenge<\/a>, and <a href=\"http:\/\/twitter.com\/stupidcancer\" target=\"_blank\">Matthew Zachary<\/a> of the <a href=\"http:\/\/i2y.com\/\" target=\"_blank\">i&#8217;m too young for this!<\/a> cancer foundation.\u00a0 Who else should be on this list? What advice do you have for them? What condition needs attention from a new participant-entrepreneur?<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Nikolai Kirienko, Crohnology.MD Project Director, is setting a new standard for transparency in research and innovation as he blogs about his work with Project HealthDesign: On days where I could have benefited from the feedback of [Observations of Daily Living] the most, I was the least likely to be recording them. Why? On the worst [&hellip;]<\/p>\n","protected":false},"author":29,"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":[171,35],"tags":[4001,4000,3988,203,4002,4003,3470,1432,431],"coauthors":[],"jetpack_publicize_connections":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Participant-Entrepreneurs: Innovating Toward Better Health - 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\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Participant-Entrepreneurs: Innovating Toward Better Health - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"Nikolai Kirienko, Crohnology.MD Project Director, is setting a new standard for transparency in research and innovation as he blogs about his work with Project HealthDesign: On days where I could have benefited from the feedback of [Observations of Daily Living] the most, I was the least likely to be recording them. Why? On the worst [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.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=\"2010-05-13T18:50:31+00:00\" \/>\n<meta name=\"author\" content=\"Susannah Fox\" \/>\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=\"Susannah Fox\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html#article\",\"isPartOf\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html\"},\"author\":{\"name\":\"Susannah Fox\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/a9cfc60ac142a83295d74c8bb0f46958\"},\"headline\":\"Participant-Entrepreneurs: Innovating Toward Better Health\",\"datePublished\":\"2010-05-13T18:50:31+00:00\",\"dateModified\":\"2010-05-13T18:50:31+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html\"},\"wordCount\":452,\"commentCount\":16,\"publisher\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#organization\"},\"keywords\":[\"Contagion Health\",\"Crohnology.MD\",\"CureTogether\",\"diabetesmine\",\"getupandmove.me\",\"i'm too young for this\",\"Project HealthDesign\",\"Robert Wood Johnson Foundation\",\"Transparency\"],\"articleSection\":[\"e-Patient stories\",\"Key People\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html\",\"url\":\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html\",\"name\":\"Participant-Entrepreneurs: Innovating Toward Better Health - SPM Blog\",\"isPartOf\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#website\"},\"datePublished\":\"2010-05-13T18:50:31+00:00\",\"dateModified\":\"2010-05-13T18:50:31+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/participatorymedicine.org\/epatients\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Participant-Entrepreneurs: Innovating Toward Better Health\"}]},{\"@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\/a9cfc60ac142a83295d74c8bb0f46958\",\"name\":\"Susannah Fox\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/image\/5b3905e71f0e9d7bc9be578d1d2e6a77\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/fbd84541fcd246264f2aa73f32f8c47f?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/fbd84541fcd246264f2aa73f32f8c47f?s=96&d=mm&r=g\",\"caption\":\"Susannah Fox\"},\"description\":\"Susannah Fox is the Entrepreneur in Residence at the Robert Wood Johnson Foundation. She has contributed to this blog since its inception. Follow her on Twitter: @SusannahFox\",\"sameAs\":[\"http:\/\/www.susannahfox.com\"],\"url\":\"https:\/\/participatorymedicine.org\/epatients\/author\/susannah-fox\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Participant-Entrepreneurs: Innovating Toward Better Health - 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\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html","og_locale":"en_US","og_type":"article","og_title":"Participant-Entrepreneurs: Innovating Toward Better Health - SPM Blog","og_description":"Nikolai Kirienko, Crohnology.MD Project Director, is setting a new standard for transparency in research and innovation as he blogs about his work with Project HealthDesign: On days where I could have benefited from the feedback of [Observations of Daily Living] the most, I was the least likely to be recording them. Why? On the worst [&hellip;]","og_url":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html","og_site_name":"SPM Blog","article_publisher":"https:\/\/www.facebook.com\/participatorymedicine","article_published_time":"2010-05-13T18:50:31+00:00","author":"Susannah Fox","twitter_card":"summary_large_image","twitter_creator":"@s4pm","twitter_site":"@s4pm","twitter_misc":{"Written by":"Susannah Fox","Est. reading time":"2 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html#article","isPartOf":{"@id":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html"},"author":{"name":"Susannah Fox","@id":"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/a9cfc60ac142a83295d74c8bb0f46958"},"headline":"Participant-Entrepreneurs: Innovating Toward Better Health","datePublished":"2010-05-13T18:50:31+00:00","dateModified":"2010-05-13T18:50:31+00:00","mainEntityOfPage":{"@id":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html"},"wordCount":452,"commentCount":16,"publisher":{"@id":"https:\/\/participatorymedicine.org\/epatients\/#organization"},"keywords":["Contagion Health","Crohnology.MD","CureTogether","diabetesmine","getupandmove.me","i'm too young for this","Project HealthDesign","Robert Wood Johnson Foundation","Transparency"],"articleSection":["e-Patient stories","Key People"],"inLanguage":"en-US","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html#respond"]}]},{"@type":"WebPage","@id":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html","url":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html","name":"Participant-Entrepreneurs: Innovating Toward Better Health - SPM Blog","isPartOf":{"@id":"https:\/\/participatorymedicine.org\/epatients\/#website"},"datePublished":"2010-05-13T18:50:31+00:00","dateModified":"2010-05-13T18:50:31+00:00","breadcrumb":{"@id":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/participant-entrepreneurs-innovating-toward-better-health.html#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/participatorymedicine.org\/epatients\/"},{"@type":"ListItem","position":2,"name":"Participant-Entrepreneurs: Innovating Toward Better Health"}]},{"@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\/a9cfc60ac142a83295d74c8bb0f46958","name":"Susannah Fox","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/image\/5b3905e71f0e9d7bc9be578d1d2e6a77","url":"https:\/\/secure.gravatar.com\/avatar\/fbd84541fcd246264f2aa73f32f8c47f?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/fbd84541fcd246264f2aa73f32f8c47f?s=96&d=mm&r=g","caption":"Susannah Fox"},"description":"Susannah Fox is the Entrepreneur in Residence at the Robert Wood Johnson Foundation. She has contributed to this blog since its inception. Follow her on Twitter: @SusannahFox","sameAs":["http:\/\/www.susannahfox.com"],"url":"https:\/\/participatorymedicine.org\/epatients\/author\/susannah-fox"}]}},"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/p8S1TQ-1tS","jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/posts\/5696"}],"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\/29"}],"replies":[{"embeddable":true,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/comments?post=5696"}],"version-history":[{"count":28,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/posts\/5696\/revisions"}],"predecessor-version":[{"id":5724,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/posts\/5696\/revisions\/5724"}],"wp:attachment":[{"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/media?parent=5696"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/categories?post=5696"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/tags?post=5696"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/participatorymedicine.org\/epatients\/wp-json\/wp\/v2\/coauthors?post=5696"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}