{"id":328,"date":"2019-11-30T00:38:45","date_gmt":"2019-11-29T23:38:45","guid":{"rendered":"https:\/\/porphyria.network\/IPPN\/?p=328"},"modified":"2021-07-20T08:26:51","modified_gmt":"2021-07-20T06:26:51","slug":"the-patient-perspective-a-matter-of-minutes","status":"publish","type":"post","link":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/","title":{"rendered":"The Patient Perspective: A Matter of Minutes"},"content":{"rendered":"\n

The Patient<\/em>, the scientific journal dedicated to patient-centered outcomes research, has published a commentary authored by Rocco Falchetto, president of the IPPN, describing how patient input can contribute to medical product research and development processes, regulatory reviews, health technology assessments and reimbursement decision making. The article builds directly from Falchetto’s presentation in the symposium, \u201cPatient preferences in the medical treatment lifecycle\u201d at the 10th<\/sup> Meeting of the International Academy of Health Preference Research (IAHPR) in Basel, Switzerland, on the 13th<\/sup> of July 2019. It focuses on the arduous years-long patient journey to access afamelanotide, illustrates challenges and opportunities in the inclusion of the patient voice in the lifecylce of medicines, and calls for a stronger integration of the patient perspective in health systems\u2019 decision-making processes.<\/p>\n\n\n\n

The IPPN looks forward to the article contributing to raising awareness on the urgent need for a full integration of the perspective of patients in decisions affecting their health and well-being as well as to a better understanding of EPP and the benefits of afamelanotide. As Falchetto concludes in his article, we hope that skeptical decision makers will reconsider their views on the value of this life-changing treatment, giving those who suffer from EPP a second chance to finally step out from the shadows and into life as fully productive and engaged members of society. <\/p>\n\n\n\n

Read the article here: The Patient Perspective – A Matter of Minutes<\/a><\/strong><\/p>\n\n\n\n

From the same issue of The Patient<\/em>, also check out the article Patient Preferences in the Medical Product Lifecycle<\/a><\/strong>, co-authored by Rocco Falchetto<\/p>\n","protected":false},"excerpt":{"rendered":"

The Patient, the scientific journal dedicated to patient-centered outcomes research, has published a commentary authored by Rocco Falchetto, president of the IPPN, describing how patient input can contribute to medical product research and development processes, regulatory reviews, health technology assessments and reimbursement decision making. The article builds directly from Falchetto’s presentation in the symposium, \u201cPatient…<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[31],"tags":[],"yoast_head":"\nThe Patient Perspective: A Matter of Minutes - International Porphyria Patient Network<\/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:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"The Patient Perspective: A Matter of Minutes - International Porphyria Patient Network\" \/>\n<meta property=\"og:description\" content=\"The Patient, the scientific journal dedicated to patient-centered outcomes research, has published a commentary authored by Rocco Falchetto, president of the IPPN, describing how patient input can contribute to medical product research and development processes, regulatory reviews, health technology assessments and reimbursement decision making. The article builds directly from Falchetto’s presentation in the symposium, \u201cPatient…\" \/>\n<meta property=\"og:url\" content=\"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/\" \/>\n<meta property=\"og:site_name\" content=\"International Porphyria Patient Network\" \/>\n<meta property=\"article:published_time\" content=\"2019-11-29T23:38:45+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2021-07-20T06:26:51+00:00\" \/>\n<meta name=\"author\" content=\"Editorial Team\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Editorial Team\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/\"},\"author\":{\"name\":\"Editorial Team\",\"@id\":\"https:\/\/porphyria.network\/IPPN\/#\/schema\/person\/81925e7a7e198769c7d37b3623015765\"},\"headline\":\"The Patient Perspective: A Matter of Minutes\",\"datePublished\":\"2019-11-29T23:38:45+00:00\",\"dateModified\":\"2021-07-20T06:26:51+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/\"},\"wordCount\":261,\"publisher\":{\"@id\":\"https:\/\/porphyria.network\/IPPN\/#organization\"},\"articleSection\":[\"English\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/\",\"url\":\"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/\",\"name\":\"The Patient Perspective: A Matter of Minutes - International Porphyria Patient Network\",\"isPartOf\":{\"@id\":\"https:\/\/porphyria.network\/IPPN\/#website\"},\"datePublished\":\"2019-11-29T23:38:45+00:00\",\"dateModified\":\"2021-07-20T06:26:51+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/porphyria.network\/IPPN\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"The Patient Perspective: A Matter of Minutes\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/porphyria.network\/IPPN\/#website\",\"url\":\"https:\/\/porphyria.network\/IPPN\/\",\"name\":\"International Porphyria Patient Network\",\"description\":\"Welcome to the International Porphyria Patient Network\",\"publisher\":{\"@id\":\"https:\/\/porphyria.network\/IPPN\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/porphyria.network\/IPPN\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"en-US\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/porphyria.network\/IPPN\/#organization\",\"name\":\"International Porphyria Patient Network\",\"url\":\"https:\/\/porphyria.network\/IPPN\/\",\"sameAs\":[],\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/porphyria.network\/IPPN\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/porphyria.network\/IPPN\/wp-content\/uploads\/2019\/06\/IPPN-logo-2019.gif\",\"contentUrl\":\"https:\/\/porphyria.network\/IPPN\/wp-content\/uploads\/2019\/06\/IPPN-logo-2019.gif\",\"width\":671,\"height\":630,\"caption\":\"International Porphyria Patient Network\"},\"image\":{\"@id\":\"https:\/\/porphyria.network\/IPPN\/#\/schema\/logo\/image\/\"}},{\"@type\":\"Person\",\"@id\":\"https:\/\/porphyria.network\/IPPN\/#\/schema\/person\/81925e7a7e198769c7d37b3623015765\",\"name\":\"Editorial Team\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/porphyria.network\/IPPN\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/3ec564d1f50ebaa304b1393eb7241f76?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/3ec564d1f50ebaa304b1393eb7241f76?s=96&d=mm&r=g\",\"caption\":\"Editorial Team\"},\"url\":\"https:\/\/porphyria.network\/IPPN\/author\/editorial-team\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"The Patient Perspective: A Matter of Minutes - International Porphyria Patient Network","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/","og_locale":"en_US","og_type":"article","og_title":"The Patient Perspective: A Matter of Minutes - International Porphyria Patient Network","og_description":"The Patient, the scientific journal dedicated to patient-centered outcomes research, has published a commentary authored by Rocco Falchetto, president of the IPPN, describing how patient input can contribute to medical product research and development processes, regulatory reviews, health technology assessments and reimbursement decision making. The article builds directly from Falchetto’s presentation in the symposium, \u201cPatient…","og_url":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/","og_site_name":"International Porphyria Patient Network","article_published_time":"2019-11-29T23:38:45+00:00","article_modified_time":"2021-07-20T06:26:51+00:00","author":"Editorial Team","twitter_card":"summary_large_image","twitter_misc":{"Written by":"Editorial Team","Est. reading time":"1 minute"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/#article","isPartOf":{"@id":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/"},"author":{"name":"Editorial Team","@id":"https:\/\/porphyria.network\/IPPN\/#\/schema\/person\/81925e7a7e198769c7d37b3623015765"},"headline":"The Patient Perspective: A Matter of Minutes","datePublished":"2019-11-29T23:38:45+00:00","dateModified":"2021-07-20T06:26:51+00:00","mainEntityOfPage":{"@id":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/"},"wordCount":261,"publisher":{"@id":"https:\/\/porphyria.network\/IPPN\/#organization"},"articleSection":["English"],"inLanguage":"en-US"},{"@type":"WebPage","@id":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/","url":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/","name":"The Patient Perspective: A Matter of Minutes - International Porphyria Patient Network","isPartOf":{"@id":"https:\/\/porphyria.network\/IPPN\/#website"},"datePublished":"2019-11-29T23:38:45+00:00","dateModified":"2021-07-20T06:26:51+00:00","breadcrumb":{"@id":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/porphyria.network\/IPPN\/2019\/11\/the-patient-perspective-a-matter-of-minutes\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/porphyria.network\/IPPN\/"},{"@type":"ListItem","position":2,"name":"The Patient Perspective: A Matter of Minutes"}]},{"@type":"WebSite","@id":"https:\/\/porphyria.network\/IPPN\/#website","url":"https:\/\/porphyria.network\/IPPN\/","name":"International Porphyria Patient Network","description":"Welcome to the International Porphyria Patient Network","publisher":{"@id":"https:\/\/porphyria.network\/IPPN\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/porphyria.network\/IPPN\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"en-US"},{"@type":"Organization","@id":"https:\/\/porphyria.network\/IPPN\/#organization","name":"International Porphyria Patient Network","url":"https:\/\/porphyria.network\/IPPN\/","sameAs":[],"logo":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/porphyria.network\/IPPN\/#\/schema\/logo\/image\/","url":"https:\/\/porphyria.network\/IPPN\/wp-content\/uploads\/2019\/06\/IPPN-logo-2019.gif","contentUrl":"https:\/\/porphyria.network\/IPPN\/wp-content\/uploads\/2019\/06\/IPPN-logo-2019.gif","width":671,"height":630,"caption":"International Porphyria Patient Network"},"image":{"@id":"https:\/\/porphyria.network\/IPPN\/#\/schema\/logo\/image\/"}},{"@type":"Person","@id":"https:\/\/porphyria.network\/IPPN\/#\/schema\/person\/81925e7a7e198769c7d37b3623015765","name":"Editorial Team","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/porphyria.network\/IPPN\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/3ec564d1f50ebaa304b1393eb7241f76?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/3ec564d1f50ebaa304b1393eb7241f76?s=96&d=mm&r=g","caption":"Editorial Team"},"url":"https:\/\/porphyria.network\/IPPN\/author\/editorial-team\/"}]}},"_links":{"self":[{"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/posts\/328"}],"collection":[{"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/comments?post=328"}],"version-history":[{"count":12,"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/posts\/328\/revisions"}],"predecessor-version":[{"id":341,"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/posts\/328\/revisions\/341"}],"wp:attachment":[{"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/media?parent=328"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/categories?post=328"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/porphyria.network\/IPPN\/wp-json\/wp\/v2\/tags?post=328"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}