{"id":15570,"date":"2013-11-18T10:00:20","date_gmt":"2013-11-18T15:00:20","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=15570"},"modified":"2013-11-17T14:28:56","modified_gmt":"2013-11-17T19:28:56","slug":"e-patient-manifesto-patients-included","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2013\/11\/e-patient-manifesto-patients-included.html","title":{"rendered":"e-Patient Manifesto: &#8220;Patients Included&#8221;"},"content":{"rendered":"<p><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2013\/11\/MartinLuther_Hammer.jpg\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-medium wp-image-15576\" alt=\"Martin Luther Hammer\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2013\/11\/MartinLuther_Hammer-300x214.jpg\" width=\"300\" height=\"214\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2013\/11\/MartinLuther_Hammer-300x214.jpg 300w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2013\/11\/MartinLuther_Hammer.jpg 560w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a>In 1517, Martin Luther nailed his \u201cNinety-Five Theses\u201d to the wooden doors of Wittenberg Cathedral, sparking a global reformation of the Christian faith that\u2019s still going on today. In the 1950s and 1960s Dr. Martin Luther King Jr. worked to drive inclusion for all in a society that had long separated people of different backgrounds. That is also an ongoing reformation.<\/p>\n<p>Parallels can be drawn in the e-patient movement, which is in a position to help drive a global reformation of healthcare. We\u2019re not planning on nailing ninety-five theses to a hospital\u2019s doors, but we are dedicated to the idea that patients deserve to be seen as equal partners by the healthcare industry. Based on a robust conversation among some of our members, we\u2019d like to propose the following as a manifesto on the importance of including patients at healthcare industry conferences that talk about patient care, or patient engagement, or patient [anything].<\/p>\n<p>First, an examination of the role, and the status, of \u201cpatient\u201d:<\/p>\n<ul>\n<li>It can be a role that comes and goes, and returns, different than before, or similar.<\/li>\n<li>It can be part of my identity &#8211; something felt and lived strongly, or coexisting quietly. This too, can develop and change.<\/li>\n<li>It can be a view others have toward me, whether I share their view or not.<\/li>\n<li>It can mean I&#8217;m highly dependent on others (I&#8217;m anesthetized for surgery) or highly independent (I&#8217;m self-managing) or co-dependent (we&#8217;re co-managing).<\/li>\n<li>Being a patient can be visible or invisible to others depending on what and how I share my experiences, and it can complement or clash with work that I do &#8211; or be irrelevant to any work I do.<\/li>\n<\/ul>\n<p>\u201cPatient&#8221; means different things, to different people, at different times. Whatever anyone\u2019s view of being a patient is, we all have one goal: that others on my care team and around me will respect my definition of my status, and seek to understand what it means to me.<\/p>\n<p>The manifesto:<\/p>\n<ul>\n<li><strong>Nothing about us without us. If you\u2019re planning a healthcare industry event that is focused on patient engagement, patient-centered design, patient-centered care, patient-centered technology, or touches on patient care in any part of the healthcare setting or system, you have to include patients on your program or be judged \u201cPatients Excluded.\u201d<\/strong><\/li>\n<\/ul>\n<p>If you\u2019d like patients on your conference agenda, the <a title=\"SPM\" href=\"http:\/\/participatorymedicine.org\/\" target=\"_blank\">Society for Participatory Medicine<\/a> has a host of experienced experts who can deliver content on a variety of topics from technology development to clinical care to patient-centered design. Add us to your \u201csend\u201d list when you put out a call for program proposals.<\/p>\n<p>\u201c<strong><a title=\"&quot;Patients Included&quot;\" href=\"http:\/\/lucienengelen.wordpress.com\/2012\/02\/15\/no-show-patients-on-conferences\/\" target=\"_blank\">Patients Included<\/a><\/strong>\u201d is a growing watch-phrase. Be a proponent of truly patient-centered care by including patients whenever policy and\/or planning that involves patient care is being developed, or discussed.<\/p>\n<p>Thanks for contributions to this conversation, and this short SPM Patients Included manifesto, go to <a title=\"David Harlow\" href=\"http:\/\/www.healthblawg.com\/\" target=\"_blank\">David Harlow<\/a> and <a title=\"Dr. Jonathan Wald\" href=\"http:\/\/www.rti.org\/newsroom\/experts.cfm?obj=C84FAC6B-5056-B100-0C7698E50BE5CC5E\" target=\"_blank\">Dr. Jonathan Wald<\/a>.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>In 1517, Martin Luther nailed his \u201cNinety-Five Theses\u201d to the wooden doors of Wittenberg Cathedral, sparking a global reformation of the Christian faith that\u2019s still going on today. In the [&hellip;]<\/p>\n","protected":false},"author":57,"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":[114,4,3,59,62,4236,2],"tags":[82,8,58,165,307,1063,417,19,312,413,169,3680,1844,7178,1235,7710],"coauthors":[],"class_list":["post-15570","post","type-post","status-publish","format-standard","hentry","category-hcs-problem-list","category-patient-networks","category-pts-as-teachers","category-policy-issues","category-reforming-healthcare","category-shared-decision-making","category-trendsprinciples","tag-e-patient","tag-e-patients","tag-health-20","tag-health-care","tag-health-care-reform","tag-health-care-system","tag-health-data","tag-health-information","tag-healthcare-system","tag-medicine","tag-participatory-medicine","tag-patient-centered-care","tag-patient-empowerment","tag-patients-included","tag-physicians","tag-shared-decision-making"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>e-Patient Manifesto: &quot;Patients Included&quot; - 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\/2013\/11\/e-patient-manifesto-patients-included.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"e-Patient Manifesto: &quot;Patients Included&quot; - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"In 1517, Martin Luther nailed his \u201cNinety-Five Theses\u201d to the wooden doors of Wittenberg Cathedral, sparking a global reformation of the Christian faith that\u2019s still going on today. 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