{"id":2206,"date":"2023-04-11T12:17:19","date_gmt":"2023-04-11T19:17:19","guid":{"rendered":"https:\/\/pxphub.org\/?p=2206"},"modified":"2023-07-14T16:08:22","modified_gmt":"2023-07-14T23:08:22","slug":"case-study-expanding-and-supporting-the-patient-partner-community-in-research","status":"publish","type":"post","link":"https:\/\/pxphub.org\/fr\/case-study-expanding-and-supporting-the-patient-partner-community-in-research\/","title":{"rendered":"\u00c9tude de cas : \u00e9largir et soutenir la communaut\u00e9 de patients partenaires en recherche"},"content":{"rendered":"<p>Tel que publi\u00e9 pr\u00e9c\u00e9demment sur le blog de l'IALA <a href=\"https:\/\/blogs.ubc.ca\/imhablog\/2023\/04\/11\/capa-patient-partner-community-case-study\/\" target=\"_blank\" rel=\"noopener\">ce sujet<\/a><\/p>\n\t<p>Par Laurie Proulx, Nadine Lalonde, Anna Samson, Linda Roy, Julie McKenna<\/p>\n\t<p><em>L\u2019IALA des IRSC remercie les personnes qui ont pris le temps de t\u00e9moigner de leur exp\u00e9rience en r\u00e9digeant cette \u00e9tude de cas fort \u00e0 propos.<\/em><\/p>\n\t<p class=\"translation-block\">Le v\u00e9cu des patients forme la trame de l\u2019<a href=\"http:\/\/www.arthritispatient.ca\/\" target=\"_self\">Alliance canadienne des arthritiques (en anglais seulement)<\/a>\u00a0(ACA), organisme citoyen qui s\u2019implique depuis plus de dix ans dans la recherche. L\u2019ACA est dirig\u00e9 par les patients, pour les patients : son conseil d\u2019administration est form\u00e9 de personnes atteintes d\u2019arthrite qui \u00e9tablissent l\u2019orientation strat\u00e9gique de l\u2019organisme et en g\u00e8rent les activit\u00e9s quotidiennes. De nombreux membres de la communaut\u00e9 de l\u2019ACA, comme la fondatrice Ann Qualman qui \u00e9tait atteinte de polyarthrite rhumato\u00efde, ont jou\u00e9 un r\u00f4le d\u00e9terminant dans la cr\u00e9ation du <a href=\"http:\/\/can.arthritisalliance.ca\/en\/archive\" target=\"_self\">R\u00e9seau canadien de l\u2019arthrite<\/a>. Ce r\u00e9seau de recherche a plac\u00e9 le partenariat avec le patient au c\u0153ur de son mandat et de ses activit\u00e9s plus de dix ans avant la mise en place de la <a href=\"https:\/\/cihr-irsc.gc.ca\/e\/48413.html\" target=\"_self\">Strat\u00e9gie de recherche ax\u00e9e sur le patient des Instituts de recherche en sant\u00e9 du Canada<\/a>.<\/p>\n<p>CAPA&#8217;s board recently identified a need to broaden and diversify the community of patient partners that contribute to health research. Board members receive many requests to be part of research teams, know they can&#8217;t represent all patient perspectives in research, and are unable to keep up with the demand.<\/p>\n<p class=\"translation-block\">L\u2019\u00a0<a href=\"https:\/\/cihr-irsc.gc.ca\/e\/13217.html\" target=\"_self\">Institut de l\u2019appareil locomoteur et de l\u2019arthrite<\/a> des Instituts de recherche en sant\u00e9 du Canada (IALA des IRSC) a appuy\u00e9 les efforts de l\u2019ACA \u00e0 cet \u00e9gard en mettant en \u0153uvre un nouveau programme de formation et de mentorat qui permet aux patients partenaires d\u2019exp\u00e9rience de transmettre leur savoir et de conseiller les novices. R\u00e9sultat : les nouvelles recrues ont une meilleure id\u00e9e du processus de recherche en sant\u00e9 et se voient offrir de nombreuses occasions de participer \u00e0 la recherche. En tant que patients partenaires chevronn\u00e9s, nous savons qu\u2019il peut \u00eatre tr\u00e8s difficile de s\u2019int\u00e9grer \u00e0 une \u00e9quipe de recherche sans soutien.<\/p>\n\t\t\t\t<img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/pxphub.org\/wp-content\/uploads\/2023\/07\/Twitter-2-Fr.png\" alt=\"Twitter 2 Fr\" itemprop=\"image\" height=\"900\" width=\"1600\" title=\"Twitter 2 Fr\" onerror=\"this.style.display='none'\"  \/>\n<h2>\n\t\tDe nouveaux patients partenaires fin pr\u00eats \u00e0 se joindre \u00e0 des \u00e9quipes de recherche\n\t<\/h2>\n\t<p class=\"translation-block\">Pour promouvoir ce nouveau programme de formation et de mentorat, l\u2019ACA a publi\u00e9 une <a href=\"https:\/\/arthritispatient.ca\/capa-news\/call-for-participants-capa-patient-partner-research-training-program\/\" target=\"_self\">demande de participation ouverte (en anglais seulement)<\/a> sur Twitter, Instagram, Facebook et dans des bulletins afin de trouver des personnes touch\u00e9es par l\u2019arthrite qui s\u2019int\u00e9ressent \u00e0 la recherche en sant\u00e9 et souhaiteraient \u00e9ventuellement faire partie d\u2019une \u00e9quipe de recherche. Les int\u00e9ress\u00e9s se sont manifest\u00e9s en grand nombre, et <a href=\"https:\/\/arthritispatient.ca\/capas-first-cohort-of-patient-research-partners\/\" target=\"_self\">six personnes (en anglais seulement)<\/a>\u00a0 ont \u00e9t\u00e9 invit\u00e9es \u00e0 former une nouvelle cohorte de patients partenaires. Ce programme en ligne gratuit, \u00e9labor\u00e9 conjointement par l\u2019IALA des IRSC et des patients partenaires, pr\u00e9sente les principes de la mobilisation des patients dans la recherche, le processus de recherche, les caract\u00e9ristiques d\u2019un partenariat fructueux et l\u2019int\u00e9gration d\u2019un patient dans une \u00e9quipe de recherche. \u00c0 cette formation structur\u00e9e s\u2019est ajout\u00e9e une communaut\u00e9 en ligne permettant la publication de nouvelles ressources, la promotion d\u2019occasions de participation \u00e0 la recherche et le soutien par les pairs.<\/p>\n<p>Les membres de la cohorte ont d\u00e9j\u00e0 mis leurs nouvelles connaissances au service de l\u2019\u00e9valuation par les pairs des demandes de subvention pr\u00e9sent\u00e9es \u00e0 l\u2019Arthritis Health Professions Association et ont \u00e9t\u00e9 jumel\u00e9s \u00e0 des chercheurs \u00e9tablis et \u00e0 des stagiaires dans le cadre de projets sur l\u2019immunit\u00e9 vaccinale contre la COVID-19, la sant\u00e9 sexuelle et reproductive, et l\u2019arthrose.<\/p>\n<p class=\"translation-block\">Les patients partenaires ont bien aim\u00e9 leur exp\u00e9rience, comme en t\u00e9moigne un <a href=\"https:\/\/www.instagram.com\/p\/Cmev5QhOv1c\/?utm_source=ig_web_copy_link\" target=\"_self\">message publi\u00e9 sur les m\u00e9dias sociaux (en anglais seulement)<\/a> par Anna Samson, dont en voici un extrait traduit :<em> \u00ab Ce que je retiens surtout, c\u2019est que mon v\u00e9cu est important. [\u2026] Mon exp\u00e9rience de la douleur chronique est non seulement pertinente, mais elle pourrait \u00e9galement se r\u00e9v\u00e9ler b\u00e9n\u00e9fique pour d\u2019autres personnes. \u00bb<\/em><\/p>\n<p class=\"translation-block\">Rendez-vous sur le <a href=\"https:\/\/arthritispatient.ca\/capas-first-cohort-of-patient-research-partners\/?hilite=patient+partner\" target=\"_self\">site Web (en anglais seulement)<\/a> de l\u2019ACA pour en savoir plus sur les personnes qui ont suivi ce programme. Les patients partenaires sont des atouts pr\u00e9cieux pour la recherche en raison de la grande vari\u00e9t\u00e9 d\u2019exp\u00e9riences, de connaissances et d\u2019int\u00e9r\u00eats qui les animent. Pour communiquer avec eux, n\u2019h\u00e9sitez pas \u00e0 envoyer un courriel \u00e0 notre <a href=\"mailto:contact@arthritispatient.ca?subject=Researchprojectofinteresttopatientpartners\" target=\"_self\" aria-label=\"send an email to contact@arthritispatient.ca?subject=Research project of interest to patient partners\" data-uw-rm-vglnk=\"\">organisme<\/a>. Ce nouveau groupe est enthousiaste, motiv\u00e9 et pr\u00eat \u00e0 s\u2019associer \u00e0 des projets de recherche nouveaux et existants, \u00e0 des demandes de subvention destin\u00e9es aux IRSC et \u00e0 d\u2019autres activit\u00e9s de recherche en sant\u00e9 comme l\u2019\u00e9valuation par les pairs. Nous esp\u00e9rons que cette communaut\u00e9 \u00e9largie de patients partenaires permettra \u00e0 la mobilisation des patients de gagner ses lettres de noblesse aupr\u00e8s des chercheurs et des patients partenaires.<\/p>","protected":false},"excerpt":{"rendered":"<p>Par Laurie Proulx, Nadine Lalonde, Anna Samson, Linda Roy, Julie McKenna<\/p>","protected":false},"author":2,"featured_media":2210,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"default","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[30],"tags":[],"class_list":["post-2206","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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