{"id":22484,"date":"2022-11-30T14:00:24","date_gmt":"2022-11-30T19:00:24","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=22484"},"modified":"2022-12-18T12:32:40","modified_gmt":"2022-12-18T17:32:40","slug":"patient-design-the-importance-of-including-patients-in-designing-health-care","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2022\/11\/patient-design-the-importance-of-including-patients-in-designing-health-care.html","title":{"rendered":"Patient Design: The Importance of Including Patients in Designing Health Care"},"content":{"rendered":"<p>This post is about a paper I co-authored in <em>JMIR<\/em> in August with Bertalan Mesk\u00f3 MD PhD, <a href=\"https:\/\/jmir.org\/2022\/8\/e39178\/\" target=\"_blank\" rel=\"noopener\">Patient Design: The Importance of Including Patients in Designing Health Care<\/a>. It&#8217;s challenging and perhaps a bit confrontational to conventional healthcare, because it directly addresses a growing reality: while healthcare strives to be more &#8220;patient centered,&#8221; what they&#8217;re doing bears no resemblance to patient <em>power<\/em>. To the contrary, it&#8217;s pure tokenism. The paper explicitly asserts this, and here on the SPM blog I want to tie the whole subject back to our founder&#8217;s work and the principles our society stands for.<\/p>\n<p>The whole story is summarized in the paper&#8217;s abstract, but academic abstracts are annoyingly hard to read, so as one of the authors I want to take the liberty to unpack it here. \u00a0Here&#8217;s the first sentence, broken into phrases for discussion:<\/p>\n<ul>\n<li><strong>&#8220;A paradigm shift is underway in the patient-clinician relationship&#8230;<\/strong>\n<ul>\n<li>The old paradigm is that the know-nothing patient comes with a need to the clinician, who knows everything worth knowing.<\/li>\n<\/ul>\n<\/li>\n<li>The shift is <strong>&#8220;driven by irreversible changes in information access&#8230;&#8221;<\/strong> (Knowledge is power, and it&#8217;s no longer bottled up the way it used to be. It&#8217;s on the internet.)<\/li>\n<li>But our entire health system is managed as if this hasn&#8217;t changed: <strong>&#8220;yet the model under which clinicians are trained, care is conducted, and care delivery is designed has not changed significantly&#8230;<\/strong><\/li>\n<li><strong>&#8220;&#8230;even though we call it \u201cpatient centered.'&#8221;<\/strong><\/li>\n<\/ul>\n<p>Lots to think about, but that&#8217;s just the first sentence of the abstract.<\/p>\n<p>The article goes on to spell out the ways this is a problem, and makes the point that merely inviting people into the room is absolutely not what we&#8217;re calling for:<\/p>\n<blockquote><p>It is no longer viable for patient centricity to mean \u201cWe were <strong><i>thinking about you<\/i><\/strong> while <strong><i>we<\/i><\/strong> made <strong><i>our<\/i><\/strong> decisions.\u201d<\/p><\/blockquote>\n<p>No; real patient power will happen only when suitable patients are actually helping to run the show &#8211; or sometimes even solving things on their own, as <a href=\"https:\/\/medium.com\/neodotlife\/dana-lewis-open-aps-hack-artificial-pancreas-af6ef23a997f\" target=\"_blank\" rel=\"noopener\">the OpenAPS community<\/a> are doing for Type 1 diabetes.<\/p>\n<p>The rest of our paper&#8217;s abstract is similarly broken out into bullets below. But first I want to tie it back to our founder.<\/p>\n<p><a href=\"http:\/\/participatorymedicine.org\/doctom\" target=\"_blank\" rel=\"noopener\">Doc Tom Ferguson<\/a>, the visionary whose work inspired our Society, anticipated (as far back as the 1970s) a world where patients would be increasingly self-reliant. In the 1980s he published a magazine, <em>Medical Self-Care<\/em>, and then a compilation of its articles in book form. In 1994 he was the medical editor of the Whole Earth Catalog Millennium Edition, just as the Web came along. \u00a0Indeed, in the e-Patient White Paper (completed posthumously), the ultimate chapter was &#8220;The Autonomous Patient and the Reconfiguration of Medical Knowledge.&#8221;<\/p>\n<p>The reconfiguration of medical knowledge. He saw that reconfiguring &#8220;who knows what&#8221; would <em>alter what&#8217;s possible for medical care<\/em> and even for self-care. Yet two decades later we still hear of recently graduated medical students who&#8217;ve been taught to discourage patients from googling.<\/p>\n<p>This must stop. It dooms those newly minted doctors to starting their careers two decades behind reality.<\/p>\n<h3>The abstract, parsed:<\/h3>\n<p>Let&#8217;s walk through the abstract, unpacking it to one sentence at a time.<\/p>\n<p><strong>The disconnect we must address:\u00a0<\/strong>&#8220;A paradigm shift is underway in the patient-clinician relationship&#8230; [It&#8217;s] driven by irreversible changes in information access.&#8221; [knowledge is power, and it&#8217;s no longer bottled up the way it used to be]<\/p>\n<p>&#8220;yet the model under which <strong>clinicians<\/strong> are trained, <strong>care<\/strong> is conducted, and care <strong>delivery<\/strong> is <strong>designed<\/strong> has not changed significantly&#8230; even though we call it \u201cpatient centered.'&#8221;<\/p>\n<p><strong>The underlying issue: the reconfiguration of medical knowledge, and who actually has it.\u00a0<\/strong>&#8220;Humanity endured centuries in which even doctors had little idea what the patient\u2019s problem really was.&#8221; (Until we understood things like bacteria, there was little a doctor could do to solve a patient&#8217;s serious problems.)<\/p>\n<p>&#8220;Science slowly solved that&#8230;&#8221; [especially the 20th century explosion of medical science] &#8220;and for a century, only doctors could know what was worth knowing&#8221; [Once real scientific knowledge existed, most of us had no access to it].<\/p>\n<p>&#8220;Today, the rise of the internet and digital health has led to the end of that era.&#8221; It doesn&#8217;t make us physicians but it sure lets us get at the knowledge. This opens the door to the big question: What do we <em>do <\/em>with this new era??<\/p>\n<p><strong>&#8220;We are already witnessing early signs of the era of participatory health:\u00a0<\/strong>genuinely empowered people living their lives and managing their health according to their own priorities &#8230;<\/p>\n<p>&#8220;in partnership and consultation with physicians as needed.<\/p>\n<p>&#8220;This may feel like a threat to the physician\u2019s sacred role, but it is no more so than when physicians adopted informed consent and then shared decision-making.&#8221;<\/p>\n<p><strong>But &#8220;patient centricity&#8221; is not patient <em>power<\/em>: <\/strong>&#8220;In the 2010s, many pharmaceutical, medical, and health care companies started to use patient centricity as a mantra.<\/p>\n<p>&#8220;We argue that to drive this paradigm change fully into existence, we need to shift &#8216;patient centricity&#8217; from a relatively passive process, driven by industry needs, into a far more <strong>active, collaborative<\/strong> process driven by both parties\u2019 needs and preferences.&#8221;<\/p>\n<p>&#8220;To build this new world of practice and workflow, we simply must engage with <strong>patients as true partners. <\/strong>&#8230;<\/p>\n<p>&#8220;To achieve medicine\u2019s new potential, it must be optimized around the wants and priorities of the ultimate stakeholder\u2014the party that has the most at stake in how it all plays out: the patient.<\/p>\n<p><strong>&#8220;Patient design is the approach that can make it happen.&#8221;<\/strong><\/p>\n<h3>Call to Action<\/h3>\n<p>We hope you&#8217;ll share the article&#8217;s thinking about patients as design partners with colleagues. We hope you&#8217;ll cite it in your own publications. Most important, we hope you&#8217;ll\u00a0<em>think about it<\/em>.<\/p>\n<p>The image theme of our website is a series of photos from Habitat for Humanity. It shows people working\u00a0<em>together<\/em> to build something new.<\/p>\n<p>That&#8217;s the kind of collaboration we have in mind. Let&#8217;s change this &#8230;<\/p>\n<blockquote><p>\u201cWe were <strong><i>thinking about you<\/i><\/strong> while <strong><i>we<\/i><\/strong> made <strong><i>our<\/i><\/strong> decisions.\u201d<\/p><\/blockquote>\n<p>&#8230; to this &#8211; full collaboration:<\/p>\n<blockquote><p>&#8220;We enjoyed <em><strong>working with you<\/strong><\/em>\u00a0while we designed this <strong>together<\/strong>.&#8221;<\/p><\/blockquote>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>This post is about a paper I co-authored in JMIR in August with Bertalan Mesk\u00f3 MD PhD, Patient Design: The Importance of Including Patients in Designing Health Care. It&#8217;s challenging [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":20172,"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":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[8338,8341,8224,3,7,62,2],"tags":[],"coauthors":[8070],"class_list":["post-22484","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-participatory-medicine","category-patient-empowerment","category-patient-engagement","category-pts-as-teachers","category-positive-patterns","category-reforming-healthcare","category-trendsprinciples"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Patient Design: The Importance of Including Patients in Designing Health Care - 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\/2022\/11\/patient-design-the-importance-of-including-patients-in-designing-health-care.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Patient Design: The Importance of Including Patients in Designing Health Care - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"This post is about a paper I co-authored in JMIR in August with Bertalan Mesk\u00f3 MD PhD, Patient Design: The Importance of Including Patients in Designing Health Care. 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