{"id":17225,"date":"2015-04-13T01:20:26","date_gmt":"2015-04-13T05:20:26","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=17225"},"modified":"2015-04-13T08:04:43","modified_gmt":"2015-04-13T12:04:43","slug":"proposed-rule-change-will-reverse-data-sharing-requirements-regina-farzad-call-for-national-day-of-action-to-fight-back","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2015\/04\/proposed-rule-change-will-reverse-data-sharing-requirements-regina-farzad-call-for-national-day-of-action-to-fight-back.html","title":{"rendered":"Proposed rule change will *reverse* data sharing requirements; Regina &#038; Farzad call for &#8220;National Day of Action&#8221; to fight back"},"content":{"rendered":"<p>Friday evening I got a tweet from SPM member Sherry Reynolds about something that had just happened in Washington. Today it unfolded.\u00a0<em>(Don&#8217;t miss her comment, too, about the history of this issue and her role in it.)<\/em><\/p>\n<p>Change can provoke upset. Technological change can be hard, especially in an industry that&#8217;s <a href=\"http:\/\/techonomy.com\/2015\/03\/a-software-chairman-and-a-public-health-ceo-agree-the-pace-of-digital-health-is-pitiful\/\" target=\"_blank\">not known for its IT leadership<\/a>. And social change can be upsetting to the point of the establishment\u00a0fighting back &#8230; as people in the civil rights movement learned. (The recent movie &#8220;Selma&#8221; makes all this fresh in many people&#8217;s minds.)<\/p>\n<p>To some observers of health IT, it appears the establishment is indeed fighting back &#8211; actively, through its lobbyists &#8211; to reverse\u00a0the progress patient activists have made. And it looks like things are coming to a head, right now, at\u00a0the huge HIMSS health IT conference just starting in Chicago.<\/p>\n<p>First, watch this two minute hallway video of SPM member Regina Holliday Sunday night, responding to that Friday news item.<\/p>\n<p><iframe loading=\"lazy\" src=\"https:\/\/www.youtube.com\/embed\/YqOFO282Ips?rel=0\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<div id=\"attachment_17231\" style=\"width: 160px\" class=\"wp-caption alignright\"><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/04\/farzad.jpg\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-17231\" class=\"wp-image-17231\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/04\/farzad-150x150.jpg\" alt=\"Farzad Mostashari, MD\" width=\"150\" height=\"150\" \/><\/a><p id=\"caption-attachment-17231\" class=\"wp-caption-text\">Farzad Mostashari, MD<\/p><\/div>\n<p><!--more-->The &#8220;day of action&#8221; she&#8217;s talking about was proposed in a speech a few hours earlier by Dr. Farzad Mostashari, former National Coordinator for health IT, who worked for years to give patients and families the data they need to manage their families&#8217; care. He is <em>not happy\u00a0<\/em>with that Friday news item &#8211; a rule change proposed by CMS, the agency that makes the rules about what providers need to do, to get full payment. After all the work we&#8217;ve done, CMS has basically said &#8220;Meh &#8211; okay, you can get full payment without anyone actually getting their data.&#8221;<\/p>\n<p><em><span style=\"font-size: 85%;\">(Technically, they propose changing the rule from &#8220;5% of patients must view or download or transmit&#8221; to &#8220;only one patient&#8221; (not 1%, one\u00a0<strong><em>patient<\/em><\/strong>) must do it. So, as one IT\u00a0executive said\u00a0today\u00a0in a side conversation, &#8220;They get their Chief Nursing Officer to look at her\u00a0record, and they&#8217;re good.&#8221;)<\/span><br \/>\n<\/em><br \/>\nFarzad&#8217;s remarks came in the closing keynote in today&#8217;s &#8220;patient engagement symposium.&#8221; Reporters in the room were typing furiously.\u00a0Within two hours\u00a0health IT journalist Neil Versel had posted\u00a0about Farzad&#8217;s talk and his call to action:<\/p>\n<h3 class=\"entry-title\"><a href=\"http:\/\/medcitynews.com\/2015\/04\/mostashari-wants-day-action-widespread-patient-access-records\/#.VSrowD52F3g.facebook\" target=\"_blank\">Mostashari wants \u2018day of action\u2019 for widespread patient access to records<\/a><\/h3>\n<p>I&#8217;m sure much more will be written &#8211; keep an eye out.<\/p>\n<p>For health data\u00a0activists this was a\u00a0particularly bitter blow to the heart, coming as it does on the heels of a different announcement last week: in a <a href=\"www.healthit.gov\/sites\/default\/files\/reports\/info_blocking_040915.pdf\" target=\"_blank\">39 page report<\/a>\u00a0requested by Congress, ONC (the agency Farzad used to head) reported that some health care providers and system vendors are\u00a0<em><strong>knowingly interfering\u00a0<\/strong><\/em>with efforts to move our data around. Here&#8217;s a screen capture from that report:<\/p>\n<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/04\/ONC-April-10-conclusion.png\" target=\"_blank\" data-rel=\"lightbox-image-1\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-17228\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/04\/ONC-April-10-conclusion.png\" alt=\"ONC April 10 report conclusion\" width=\"600\" height=\"257\" border=\"1\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/04\/ONC-April-10-conclusion.png 1020w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/04\/ONC-April-10-conclusion-300x129.png 300w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/04\/ONC-April-10-conclusion-800x343.png 800w\" sizes=\"auto, (max-width: 600px) 100vw, 600px\" \/><\/a><\/p>\n<p>SPM board member Jane Sarasohn-Kahn of the Health Populi blog <a href=\"https:\/\/www.facebook.com\/photo.php?fbid=10152791953847960&amp;set=a.10150327060902960.356655.701932959&amp;type=1&amp;permPage=1\" target=\"_blank\">said on Facebook<\/a>, &#8220;We can make this a movement &#8211; we&#8217;re waiting to hear about a date-certain, which I will certainly promulgate on every social network I&#8217;m on &#8211; and I will as you to do the same.&#8221;<\/p>\n<p>Separately, on the\u00a0<em>Healthcare Informatics<\/em>\u00a0blog Sunday night, journalist Gabe Perna <a href=\"http:\/\/www.healthcare-informatics.com\/print\/blogs\/gabriel-perna\/disappointing-proposed-change-stage-2-looms-over-patient-engagement-symposium?page=all\" target=\"_blank\">wrote<\/a><\/p>\n<blockquote><p>I can\u2019t help now but feel as if dropping it to one person is ridiculous. &#8230; It\u2019s quite frankly, an insulting blow to patient engagement efforts everywhere, and all that it represents in the shift towards the new healthcare. &#8230;<\/p>\n<p>[Farzad] called for a day where one million patients asked for their health records as a show that this measure shouldn\u2019t be gutted. If that day comes, I\u2019ll definitely be one of the million.<\/p><\/blockquote>\n<p>Gabe also noted that the proposed change was buried in a big set of changes that were released just before closing time last Friday.<\/p>\n<h2>Is the empire striking back?<\/h2>\n<p>Wow: &#8220;knowingly interfering &#8230; in ways that limit [information&#8217;s]\u00a0availability,&#8221; &#8220;ridiculous,&#8221; &#8220;insulting blow.&#8221;<\/p>\n<p>Amazed by both the CMS and ONC announcements (which I hadn&#8217;t seen until today), I asked someone in Sunday&#8217;s\u00a0patient engagement session, &#8220;Is this The Empire Strikes Back??&#8221; He said &#8220;If it is, we need the &#8216;Return of the Jedi.'&#8221; That&#8217;s what Farzad&#8217;s call to action and Regina&#8217;s impromptu talk look like.<\/p>\n<p>Stay tuned.<\/p>\n<p><em>p.s. Note that this is what it looks like when patients\u00a0<strong>are\u00a0<\/strong>present at a healthcare conference.<\/em><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Friday evening I got a tweet from SPM member Sherry Reynolds about something that had just happened in Washington. Today it unfolded.\u00a0(Don&#8217;t miss her comment, too, about the history of [&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":[367,6],"tags":[4886,38,7594,4987,3949,4616,55,7593],"coauthors":[],"class_list":["post-17225","post","type-post","status-publish","format-standard","hentry","category-medical-records","category-newsgossip","tag-cms","tag-data","tag-farzad-mostashari","tag-health-it","tag-onc","tag-patient-engagement","tag-patients","tag-regina-farzad"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Proposed rule change will *reverse* data sharing requirements; Regina &amp; Farzad call for &quot;National Day of Action&quot; to fight back - 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\/2015\/04\/proposed-rule-change-will-reverse-data-sharing-requirements-regina-farzad-call-for-national-day-of-action-to-fight-back.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Proposed rule change will *reverse* data sharing requirements; Regina &amp; Farzad call for &quot;National Day of Action&quot; to fight back - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"Friday evening I got a tweet from SPM member Sherry Reynolds about something that had just happened in Washington. 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