{"id":21604,"date":"2020-03-09T09:17:25","date_gmt":"2020-03-09T13:17:25","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=21604"},"modified":"2020-03-09T09:22:05","modified_gmt":"2020-03-09T13:22:05","slug":"this-three-minute-video-shows-harm-of-information-blocking","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2020\/03\/this-three-minute-video-shows-harm-of-information-blocking.html","title":{"rendered":"Three minute patient video nails the suffering from information blocking"},"content":{"rendered":"<p>Six weeks ago we hosted the <a href=\"https:\/\/participatorymedicine.org\/epatients\/2020\/01\/patient-caregiver-letter-supporting-proposed-onc-rule-on-improving-flow-of-our-data.html\">Patient\/caregiver letter supporting proposed HHS rules on improving flow of our data<\/a>. It&#8217;s a crowdsourced collection of stories of how patients suffered, were harmed, incurred costs or delays because their own health data wasn&#8217;t at the point of need &#8211; or benefitted when data <em>was <\/em>available. A dozen more stories were added in comments. It was kindled by SPM member Morgan Gleason, produced with my help and posted here.<\/p>\n<p>Last week several of us, including SPM member Grace Cordovano, were invited to participate in the <a href=\"http:\/\/healthdevjam.com\" target=\"_blank\" rel=\"noopener noreferrer\">HealthDevJam<\/a> preconference that was to be today, at the opening of the HIMSS health IT conference in Orlando. We created this silent three minute video giving a new format to these stories.<\/p>\n<p><iframe loading=\"lazy\" title=\"Patient Story Project - sneak preview\" width=\"1080\" height=\"810\" src=\"https:\/\/www.youtube.com\/embed\/9SqohvPiCgY?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<p>Grace has agreed to give this project a home at her <a href=\"http:\/\/Unblock.Health\" target=\"_blank\" rel=\"noopener noreferrer\">Unblock.Health<\/a> site, where it will live on in expanded form. Details are still unfolding, but as another patient movement said, we are not waiting. Activists take action.<\/p>\n<h2>Why we&#8217;re doing this<\/h2>\n<p>Some opponents of data access and interoperability have warned vaguely, basically saying, &#8220;You don&#8217;t know what you&#8217;re doing. Something bad might happen if your data gets out.&#8221; We echo the great Greta Thunberg, saying, &#8220;How dare you!&#8221; We <em>do\u00a0<\/em>know\u00a0<em>exactly\u00a0<\/em>what we&#8217;re doing. Bad things already\u00a0<em>do\u00a0<\/em>happen when our health data is prevented from moving &#8230; and good things can happen when we do have access.<\/p>\n<p>Please watch and share.<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Six weeks ago we hosted the Patient\/caregiver letter supporting proposed HHS rules on improving flow of our data. 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