{"id":13343,"date":"2012-10-01T17:00:53","date_gmt":"2012-10-01T21:00:53","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=13343"},"modified":"2012-10-02T09:21:44","modified_gmt":"2012-10-02T13:21:44","slug":"opennotes-the-results-are-in-great-news-for-patient-engagement","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/10\/opennotes-the-results-are-in-great-news-for-patient-engagement.html","title":{"rendered":"OpenNotes: The results are in. GREAT news for patient engagement."},"content":{"rendered":"<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2012\/01\/OpenNotes.png\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-full wp-image-11293\" style=\"margin-left: 10px;\" title=\"\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2012\/01\/OpenNotes.png\" alt=\"\" width=\"258\" height=\"119\" \/><\/a>Regular readers know that we&#8217;ve long anticipated the result of the OpenNotes project. Our first post about it was in June 2010: \u00a0<a title=\"Permanent Link to \u201cOpenNotes\u201d project begins: what happens when patients can see the physician\u2019s visit notes?\" href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2010\/06\/6154.html\" rel=\"bookmark\">\u201cOpenNotes\u201d project begins: what happens when patients can see the physician\u2019s visit notes?<\/a>\u00a0 It tied\u00a0the issue all the way back to the birth of the Web, in 1994:<\/p>\n<blockquote><p>The opening anecdote of\u00a0<a href=\"http:\/\/www.acor.org\/epatientswiki\/index.php\/Hunters_and_Gatherers_of_Medical_Information#Dr._Blakely_.26_Mr._Murphy\">the e-patient white paper<\/a>\u00a0[20th page of <a href=\"https:\/\/participatorymedicine.org\/epatients\/e-Patients_White_Paper.pdf\" target=\"_blank\">this PDF<\/a>; 23rd page in the\u00a0<a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2011\/11\/Libro-blanco-de-los-e-Pacientes.pdf\" target=\"_blank\">Spanish edition<\/a>] tells of a patient who impersonated a doctor in 1994, to get his hands on an article about an operation he was about to have. He got busted.<\/p>\n<p><a href=\"https:\/\/www.youtube.com\/watch?v=pyossoHFDJg\" data-rel=\"lightbox-video-0\" target=\"_blank\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright\" style=\"margin-left: 10px;\" title=\"seinfeld-elaine-EHR\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2010\/06\/seinfeld-elaine-EHR.jpg\" alt=\"\" width=\"356\" height=\"288\" \/><\/a>Two years later episode 139 of\u00a0<em>Seinfeld<\/em>\u00a0had something similar \u2013 Kramer impersonates a doctor to try to get Elaine\u2019s medical record:\u00a0<em>(Click to watch it on YouTube; they won\u2019t allow embedding on other sites.)<\/em><\/p>\n<p><em><\/em>Now, the Robert Wood Johnson Foundation (RWJF) is funding a study called OpenNotes to explore taking it a\u00a0<em>big\u00a0<\/em>step further: what happens if patients can see, online, every last bit of what their doctors wrote?<img decoding=\"async\" title=\"More...\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-includes\/js\/tinymce\/plugins\/wordpress\/img\/trans.gif\" alt=\"\" \/>Do doctors get overwhelmed with questions? Do patients freak out when they read the ucky medical words that doctors write? Does the world go to hell in a handbasket, as some have worried aloud?<\/p><\/blockquote>\n<p>The results were released at 5:00 p.m. ET today, in a new article in the <em>Annals of Internal Medicine<\/em>. (See <a href=\"http:\/\/www.myopennotes.org\/opennotes-final-results-released\/\" target=\"_blank\">the OpenNotes website<\/a>.) Co-lead authors Tom Delbanco MD and Jan Walker, RN, MBA shared a pre-release copy with e-patients.net. They describe the study&#8217;s intent:<!--more--><\/p>\n<blockquote><p>Drawing on existing literature, including small studies\u00a0of patients with chronic illness, we developed 3 principal\u00a0hypotheses.<\/p>\n<ul>\n<li>First, most patients would read the notes, and those who did would report both greater engagement\u00a0in care and improved management of health and illness.<\/li>\n<li>Second, the intervention would have few adverse effects on the doctors\u2019 frenetic work lives.<\/li>\n<li>Third, at the end of the approximately 1-year intervention, a large percentage of doctors and patients would choose to continue with open\u00a0notes.<\/li>\n<\/ul>\n<\/blockquote>\n<p>I can&#8217;t emphasize enough the importance of the study&#8217;s design, as well: Evidence of patient engagement is constantly met with &#8220;Well, my patients are different,&#8221; &#8220;My patients are poorer,&#8221; &#8220;You guys are all urban geeks,&#8221; &#8220;Your <em>n<\/em>\u00a0is too small,&#8221;\u00a0etc. So this study is large (over a hundred docs and nearly 20,000 patients), and in three very different settings:<\/p>\n<ul>\n<li>Urban academic medical center (Beth Israel Deaconess, Harvard-affiliated, Boston &#8211; home of SPM co-founder \/ past President \/ past co-chair Dr. Danny Sands and me. We were among the guinea pigs, I mean study participants.)<\/li>\n<li>Rural: Geisinger, in Pennsylvania<\/li>\n<li>&#8220;Safety net&#8221; (urban poor): Harborview, in Seattle<\/li>\n<\/ul>\n<p><em>This issue &#8211; patient access to the medical record &#8211; is at the core of participatory medicine. <\/em>As Dr. Sands has said, &#8220;How can patients participate if they can&#8217;t see what I see?&#8221;<\/p>\n<p>We love that the <a href=\"http:\/\/annals.org\/article.aspx?articleid=1363511\" target=\"_blank\">full text of this article<\/a> is open access &#8211; free to the public &#8211; and\u00a0and<a href=\"http:\/\/annals.org\/article.aspx?articleid=1363515\" target=\"_blank\"> one of the accompanying editorials<\/a> was written by a patient. Kudos to the <em>Annals<\/em>!<\/p>\n<p>The results, in brief: <em>(emphasis added)<\/em><\/p>\n<ul>\n<li><strong>Patient experience:<\/strong><\/li>\n<ul>\n<li>&#8220;Among patients with notes available, 84% at BIDMC,\u00a092% at GHS, and 47% at HMC opened at least 1 note.&#8221;<\/li>\n<li>&#8220;A large majority\u00a0of patients perceived benefits, and few reported \u00a0downsides of open notes; however, one third of patients\u00a0were concerned about privacy.&#8221;<\/li>\n<li>&#8220;Nearly 99% of\u00a0patient respondents at BIDMC, GHS, and HMC wanted\u00a0continued access to their visit notes.&#8221;<\/li>\n<li>&#8220;86% at BIDMC,\u00a087% at GHS, and 89% at HMC agreed that <strong>open notes\u00a0would be a somewhat or very important factor in choosing\u00a0a future doctor or health plan.<\/strong>&#8220;(!)<\/li>\n<\/ul>\n<\/ul>\n<ul>\n<li><strong>Physician experience:<\/strong><\/li>\n<ul>\n<li>Most docs estimated that conversations with patients\u00a0about open notes occurred <strong>less than once a month<\/strong><\/li>\n<li>&#8220;Moreover,\u00a038% at BIDMC, 30% at GHS, and 43% at HMC indicated\u00a0that they <strong>could not estimate<\/strong> the proportion of their\u00a0patients who read notes <strong>because no or very few patients ever <em>mentioned<\/em> it.<\/strong>&#8220;<\/li>\n<\/ul>\n<\/ul>\n<ul>\n<li>&#8220;More than half of patients who received medications\u00a0reported improved adherence, consistent with findings\u00a0about general adherence from another open-records\u00a0study.&#8221;<\/li>\n<\/ul>\n<ul>\n<li>At the end, <strong>&#8220;99%\u00a0of patients wanted open notes to continue and no doctor elected\u00a0to stop.&#8221;<\/strong><\/li>\n<\/ul>\n<p><strong>My thoughts<\/strong><\/p>\n<p>First, I&#8217;m thrilled that the study was so well designed, and so <em>big<\/em>. When an earnest skeptic expresses concern about something, there&#8217;s nothin&#8217; like a big honkin&#8217; <em>n <\/em>to relieve those concerns. Sure, there will still be skeptics, but now we have data.<\/p>\n<p>Second, this is something we e-patients &#8211; and potential e-patients &#8211; can take to the doctor and say &#8220;Please: get that patient portal thingie for your new EMR, and even better, let us see your actual notes! \u00a0See here? \u00a0It won&#8217;t kill you &#8211; might even <em>make us do our part<\/em> better!&#8221;<\/p>\n<p>(During the study I posted about two personal experiences: an open note <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2010\/06\/hm-because-of-viewing-my-visit-notes-i-did-something-better.html\" target=\"_blank\">helped me remember<\/a> to do something, and <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2010\/08\/reflections-after-a-specialist-visit-without-opennotes.html\" target=\"_blank\">my thoughts on a specialist visit<\/a> that was <em>not <\/em>enabled by\u00a0open notes, and clearly limited my care.)<\/p>\n<p>And finally (for now), many American hospital executives are greatly concerned about the new era of &#8220;accountable care,&#8221; in which their reimbursement will increasingly depend on how well patients do, and that of course is affected by how <em>much <\/em>patients do. From the looks of things, this study &#8211; and my personal experience in it &#8211; strongly support the idea that best patient performance is supported by bringing the patient in &#8211; letting us see the medical record.<\/p>\n<p>The evidence says it doesn&#8217;t ruin the doc&#8217;s life. In fact, it&#8217;ll be a business advantage: most patients said it&#8217;ll be a factor in which providers they&#8217;ll choose! <em>That&#8217;s <\/em>how much patients want it.<\/p>\n<p>I never met our founder &#8220;Doc Tom&#8221; Ferguson, but I imagine he&#8217;d be thrilled by this evidence. Give us our data &#8211; please. Let Patients Help!<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Regular readers know that we&#8217;ve long anticipated the result of the OpenNotes project. Our first post about it was in June 2010: \u00a0\u201cOpenNotes\u201d project begins: what happens when patients can see the physician\u2019s visit notes?\u00a0 It tied\u00a0the issue all the way back to the birth of the Web, in 1994: The opening anecdote of\u00a0the e-patient [&hellip;]<\/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":[21,1,367,5,4986,59,7,62],"tags":[],"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>OpenNotes: The results are in. 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Our first post about it was in June 2010: \u00a0\u201cOpenNotes\u201d project begins: what happens when patients can see the physician\u2019s visit notes?\u00a0 It tied\u00a0the issue all the way back to the birth of the Web, in 1994: The opening anecdote of\u00a0the e-patient [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/participatorymedicine.org\/epatients\/2012\/10\/opennotes-the-results-are-in-great-news-for-patient-engagement.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=\"2012-10-01T21:00:53+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2012-10-02T13:21:44+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2012\/01\/OpenNotes.png\" \/>\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=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2012\/10\/opennotes-the-results-are-in-great-news-for-patient-engagement.html#article\",\"isPartOf\":{\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/2012\/10\/opennotes-the-results-are-in-great-news-for-patient-engagement.html\"},\"author\":{\"name\":\"e-Patient Dave\",\"@id\":\"https:\/\/participatorymedicine.org\/epatients\/#\/schema\/person\/964cf120da8ac17067b46802eb561e5d\"},\"headline\":\"OpenNotes: The results are in. 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