{"id":17371,"date":"2015-05-12T10:14:55","date_gmt":"2015-05-12T14:14:55","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=17371"},"modified":"2015-05-12T10:14:55","modified_gmt":"2015-05-12T14:14:55","slug":"patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death-kqed","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2015\/05\/patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death-kqed.html","title":{"rendered":"Patient Advocates Fight for Access to Medical Data: \u2018It\u2019s a Matter of Life and Death\u2019 (KQED)"},"content":{"rendered":"<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/05\/KQED-May-2015.png\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-17373\" style=\"padding-right: 10px;\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/05\/KQED-May-2015-300x225.png\" alt=\"Screen capture of KQED post\" width=\"389\" height=\"293\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/05\/KQED-May-2015-300x225.png 300w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/05\/KQED-May-2015-800x601.png 800w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/05\/KQED-May-2015.png 888w\" sizes=\"auto, (max-width: 389px) 100vw, 389px\" \/><\/a>The advo-cacy of individual SPM members is gaining increasing visibility in the mainstream media, driving home the human impact of policies that help &#8211; or don&#8217;t help &#8211; patients be active contributors to their families&#8217; health and care.\u00a0This is excruciatingly important as America debates the proposed rule changes for patient data access <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2015\/04\/no-mu-without-me-join-the-campaign-to-fight-health-data-hiding.html\" target=\"_blank\">mentioned here<\/a> last month.<\/p>\n<p>An important new post yesterday by <a href=\"http:\/\/twitter.com\/ChristinaFarr\" target=\"_blank\">@ChristinaFarr<\/a> on the KQED Science blog, <a href=\"http:\/\/ww2.kqed.org\/futureofyou\/2015\/05\/11\/patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death\/\" target=\"_blank\">Patient Advocates Fight for Access to Medical Data: \u2018It\u2019s a Matter of Life and Death\u2019<\/a>, starts with the story of Julia Hallissy (right) and her daughter, <a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/05\/Julia-Hallissy.png\" target=\"_blank\" data-rel=\"lightbox-image-1\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\" wp-image-17384  alignright\" style=\"margin-left: 10px; margin-top: 10px;\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2015\/05\/Julia-Hallissy.png\" alt=\"Julia Hallissy\" width=\"86\" height=\"130\" \/><\/a>in which her active engagement with the chart found many mistakes and missed facts. Our best-known member, Regina Holliday, is quoted as saying &#8220;This is a slap in the face of patient rights,&#8221; and is featured in the post&#8217;s cover photo and another picture.<\/p>\n<p><span style=\"color: #0000ff;\"><strong>Access to our records, and their easy flow from doctor to doctor, can literally be a matter of life and death<\/strong><\/span>, yet a report sent to Congress last month says some players are &#8220;<a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2015\/04\/ny-times-editorial-on-forces-who-knowingly-interfere-with-health-info-exchange.html\" target=\"_blank\">knowingly interfering<\/a>&#8221; with their transfer. <strong>Government policy must forbid this: it is a source of harm.<\/strong> And policy\u00a0<em>must\u00a0<\/em>encourage the flow of our data, including teaching providers how to teach their patients. Clearly there is value when patients help manage the data; we\u00a0<em>must\u00a0<\/em>enable it, even if it&#8217;s hard to do. Please, vendors &#8211; improve the software &#8211; make it easier for providers to help patients do it.<\/p>\n<p>And hey, vendors &#8211; if\u00a0<em>your\u00a0<\/em>system is good at it (and has higher patient participation), brag about it! Shout about your achievements! This is important.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The advo-cacy of individual SPM members is gaining increasing visibility in the mainstream media, driving home the human impact of policies that help &#8211; or don&#8217;t help &#8211; patients be [&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":[1,367,5,59],"tags":[38,68,7625,175,3592],"coauthors":[],"class_list":["post-17371","post","type-post","status-publish","format-standard","hentry","category-general","category-medical-records","category-ptdoc-co-care","category-policy-issues","tag-data","tag-health","tag-julia-hallissy","tag-patient","tag-spm"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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