{"id":6108,"date":"2025-08-25T13:35:57","date_gmt":"2025-08-25T20:35:57","guid":{"rendered":"https:\/\/pxphub.org\/?p=6108"},"modified":"2025-12-08T15:22:08","modified_gmt":"2025-12-08T23:22:08","slug":"patient-engagement-research-ambassadors-2024-community-patient-engagement-report-how-we-co-created-it-and-some-highlights","status":"publish","type":"post","link":"https:\/\/pxphub.org\/fr\/patient-engagement-research-ambassadors-2024-community-patient-engagement-report-how-we-co-created-it-and-some-highlights\/","title":{"rendered":"Rapport communautaire sur la mobilisation des patients 2024 des ambassadeurs de la recherche ax\u00e9e sur le patient : processus d\u2019\u00e9laboration et points saillants"},"content":{"rendered":"\"PERA\n\t\t\t\n\t\t\t\t\t\t\tLe rapport\n\t\t\t\t\t<\/a>\n\t

Par Deb Baranec, Beth Ciavaglia, Anna Samson, Dawn Richards<\/em><\/p>\n

The Institute of Musculoskeletal Health and Arthritis’s (IMHA’s) Patient Engagement Research Ambassadors (affectionately called “PERA”) meet virtually every two months and provide insights and perspectives from their own lived experiences and those from their communities to help IMHA achieve its goals and priorities. One member of PERA has also been a member of IMHA’s Institute Advisory Board and has reported regularly to the Board about PERA’s work. In 2024, PERA members expressed wanting to share their work beyond the Institute Advisory Board to IMHA’s greater community.<\/p>\n

De cette initiative est n\u00e9 le Rapport communautaire sur la mobilisation des patients<\/a>. Le pr\u00e9sent billet de blogue explique le processus d\u2019\u00e9laboration du rapport ainsi que les sujets qu\u2019il aborde.<\/p>\n

Co-cr\u00e9ation de l\u2019infographie<\/u><\/p>\n

Lorsque les ARAP ont envisag\u00e9 de cr\u00e9er un rapport, ils ont organis\u00e9 une s\u00e9ance de remue- m\u00e9ninges pour d\u00e9terminer son contenu et son format. Le groupe a retenu des sujets qui concordent avec les projets auxquels ils ont particip\u00e9 ensemble en 2024. Le groupe a d\u00e9cid\u00e9 qu\u2019une infographie, accompagn\u00e9e d\u2019une description en langage clair, assurerait l\u2019accessibilit\u00e9 du rapport.<\/p>\n

Based on the that initial conversation, a patient engagement specialist (DR) who supports PERA’s work drafted initial text related to the report’s topics, including any numbers or statistics that were needed. PERA members contributed to editing and refining the text at meetings until they felt it was complete. One PERA member (AS) who is experienced with creating infographics used Canva to draft an infographic. The infographic was shared with PERA for their comments and edits, and then the final version was created.<\/p>\n

En fin de compte, tous les ARAP ont contribu\u00e9 \u00e0 la production du rapport.<\/p>\n

Rapport communautaire sur la mobilisation des patients<\/u><\/p>\n

Le rapport comporte de nombreux liens et se divise six sections, chacune mettant en lumi\u00e8re une initiative ou un projet cl\u00e9 auquel les ARAP ont particip\u00e9 durant l\u2019ann\u00e9e 2024. Voici le contenu des sections :<\/p>\n

    \n
  1. Pr\u00e9sentation des ARAP et de leur participation aux conseils, comit\u00e9s ou groupes de\ntravail de l\u2019IALA<\/li>\n
  2. S\u00e9rie de webinaires PxP des ARAP<\/li>\n
  3. Conf\u00e9rence PxP, une conf\u00e9rence organis\u00e9e pour les patients, par les patients qui porte sur la participation des patients \u00e0 la recherche<\/li>\n
  4. Articles \u00e9valu\u00e9s par des pairs dont des ARAP sont les coauteurs<\/li>\n
  5. Guide pratique sur la participation des patients \u00e0 la recherche, nombre de personnes qui ont suivi le cours et r\u00f4le de ces apprenants<\/li>\n
  6. Ateliers sur la participation des patients \u00e0 la recherche<\/li>\n<\/ol>\n

    Les ARAP esp\u00e8rent que leur travail incitera le public \u00e0 participer \u00e0 ces initiatives et que d\u2019autres personnes s\u2019en serviront comme mod\u00e8le pour cr\u00e9er leurs propres initiatives.<\/p>\n

    PERA members’ highlights in 2024<\/u><\/p>\n

    Comme tous les travaux des ARAP, le pr\u00e9sent billet de blogue est le fruit de la collaboration du groupe. Voici les faits saillants des r\u00e9alisations de trois ambassadrices de la recherche ax\u00e9e sur le patient en 2024 :<\/p>\n

    “\u00ab \u00catre membre de l\u2019IALA des IRSC en tant qu\u2019ARAP a \u00e9t\u00e9 l\u2019un des plus grands honneurs de ma vie. Gr\u00e2ce au leadership solide et aux pr\u00e9cieux conseils de Dawn Richards, Karim Khan et Hetty Mulhall, ainsi qu\u2019au soutien de l\u2019\u00e9quipe de l\u2019IALA, notre groupe a accompli \u00e9norm\u00e9ment de choses. Nous avons \u00e9galement appris les uns des autres en mettant \u00e0 profit notre expertise, nos forces et nos passions pour obtenir de meilleurs r\u00e9sultats en soins de sant\u00e9 et en recherche clinique. D\u2019ailleurs, nous avons nou\u00e9 des amiti\u00e9s et collabor\u00e9 \u00e0 d\u2019autres projets en dehors de l\u2019IALA. Nous nous sommes soutenus les uns les autres et nous nous sommes f\u00e9licit\u00e9s de nos r\u00e9ussites respectives. La s\u00e9rie de webinaires PxP des ARAP a connu un grand succ\u00e8s, tout comme la conf\u00e9rence PxP, une conf\u00e9rence organis\u00e9e pour les patients, par les patients. Ces initiatives ont d\u00e9montr\u00e9 l\u2019ampleur de l\u2019expertise, de la passion et de l\u2019engagement des ARAP en ce qui touche la mobilisation des patients. \u00bb<\/em>” – Deb Baranec<\/p>\n

    “\u00ab Le fait d\u2019avoir \u00e9t\u00e9 invit\u00e9e comme conf\u00e9renci\u00e8re au deuxi\u00e8me webinaire de la s\u00e9rie de webinaires PxP des ARAP a \u00e9t\u00e9 un moment marquant pour moi! En tant que nouvelle patiente partenaire, j\u2019ai eu l\u2019occasion de parler des raisons pour lesquelles j\u2019ai accept\u00e9 ce r\u00f4le et j\u2019ai d\u00e9couvert comment les motivations \u00e9voluent au fil du partenariat. J\u2019ai appris aupr\u00e8s de tous les autres membres du groupe des ARAP, notamment \u00e0 mieux d\u00e9fendre mes int\u00e9r\u00eats \u00e0 titre de patiente partenaire. \u00bb<\/em>” – Anna Samson<\/p>\n

    “My role as a PERA member has enhanced both my personal and professional life. It is a joy to engage with my peers and the greater community. Promoting patient partnership in research is so important and I’m honoured that IMHA has allowed me to do so.<\/em>” – Beth Ciavaglia<\/p>","protected":false},"excerpt":{"rendered":"

    Click Here for Report By Deb Baranec, Beth Ciavaglia, Anna Samson, Dawn Richards The Institute of Musculoskeletal Health and Arthritis’s […]<\/p>\n","protected":false},"author":5,"featured_media":0,"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":"","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":"","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":"set","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":[1],"tags":[],"class_list":["post-6108","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\nPatient Engagement Research Ambassadors\u2019 2024 Community Patient Engagement Report: How we co-created it and some highlights - 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