{"id":2614,"date":"2024-01-26T14:27:24","date_gmt":"2024-01-26T22:27:24","guid":{"rendered":"https:\/\/pxphub.org\/?p=2614"},"modified":"2024-06-06T08:51:39","modified_gmt":"2024-06-06T15:51:39","slug":"pxp-partnering-to-make-research-stronger","status":"publish","type":"post","link":"https:\/\/pxphub.org\/fr\/pxp-partnering-to-make-research-stronger\/","title":{"rendered":"PxP : Tisser des liens pour renforcer la recherche"},"content":{"rendered":"

Par Joletta Belton<\/em><\/p>\r\n\t

In September of 2023 we held the first ever PxP Conference. PxP stands for For Patients by Patients, and the inaugural conference was all about Partnering to Make Research Stronger. It was an honor to be a part of our international steering committee, made up entirely of people with lived experience of various health conditions. The PxP Conference was truly and meaningfully led by people with lived experience, and was fully supported by the Canadian Institute of Health Research’s Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA).<\/p>\r\n

Pour cette premi\u00e8re conf\u00e9rence PxP, le comit\u00e9 directeur a choisi le th\u00e8me \u00ab Tisser des liens pour renforcer la recherche \u00bb. Le comit\u00e9 voulait reconna\u00eetre les pr\u00e9cieuses connaissances et contributions que les personnes vivant avec la douleur ou toute autre condition m\u00e9dicale apportent \u00e0 la recherche en sant\u00e9. Lorsqu\u2019on inclut et \u00e9paule les personnes ayant cette exp\u00e9rience v\u00e9cue et qu\u2019on en fait des partenaires collaboratifs dans notre travail, on profite de connaissances et d\u2019une expertise qui am\u00e9liorent et approfondissent notre compr\u00e9hension de la condition m\u00e9dicale \u00e9tudi\u00e9e ainsi que de ce qui peut \u00eatre fait en la mati\u00e8re. Comme nous l\u2019avons vu lors de la conf\u00e9rence, les personnes vivant avec la douleur et divers \u00e9tats de sant\u00e9 ont contribu\u00e9 \u00e0 la recherche tout au long du processus, de la cr\u00e9ation d\u2019importants programmes de recherche et de l\u2019\u00e9tablissement de questions de recherche pertinentes \u00e0 la conception de solutions et produits innovants, en passant par la diss\u00e9mination et la mise en \u0153uvre efficace des connaissances dans le monde r\u00e9el.<\/p>\r\n

Mais, comment mobiliser ces gens? Comment tisser des liens pour renforcer la recherche? Nous sommes tous \u00e0 diff\u00e9rents points dans nos d\u00e9marches de partenariat avec la patient\u00e8le. Certains d\u2019entre nous viennent tout juste de d\u00e9couvrir le monde des partenariats avec les patients et le public pour la recherche et souhaitent s\u2019impliquer davantage, alors que d\u2019autres ont commenc\u00e9 \u00e0 s\u2019impliquer dans des \u00e9tudes, mais c\u2019est encore tout nouveau. Certaines personnes sont des stagiaires, alors que d\u2019autres sont des chercheuses ou chercheurs exp\u00e9riment\u00e9s qui ont travaill\u00e9 dans plusieurs \u00e9quipes et sur plusieurs projets de recherche. Certaines personnes sont m\u00eame \u00e0 la t\u00eate d\u2019\u00e9quipes ou de projets de recherche!<\/p>\r\n

Le comit\u00e9 directeur de PxP voulait s\u2019assurer que les s\u00e9ances soient accessibles \u00e0 tous, peu importe o\u00f9 chacun en est dans son propre parcours de partenariat avec la patient\u00e8le. La conf\u00e9rence s\u2019ouvrait sur un portrait de la participation de la patient\u00e8le et du public<\/a> et s\u2019est termin\u00e9e en faisant l\u2019\u00e9cho des d\u00e9couvertes.<\/a>Et entre ces deux points, l\u2019\u00e9v\u00e9nement aura touch\u00e9 un peu \u00e0 tout : mentoring <\/a>to d\u00e9fis,<\/a>, autorecherche,<\/a> to perspectives des chercheuses et chercheurs,<\/a>, inclusion de toutes les voix<\/a> to leading the way<\/a>, and le\u00e7ons donn\u00e9es par les leaders du milieu<\/a> qui ont fourni des ressources qui se trouvent \u00e9galement sur la plateforme de ressources PxP.<\/a>.<\/p>\r\n

Ce fut un honneur de si\u00e9ger au comit\u00e9 directeur, et une exp\u00e9rience extr\u00eamement \u00e9clairante que de prendre part \u00e0 la conf\u00e9rence, que ce soit dans l\u2019audience, comme h\u00f4te ou \u00e0 titre de mod\u00e9ratrice. Les tr\u00e9sors d\u2019expertise et d\u2019exp\u00e9rience r\u00e9v\u00e9l\u00e9s lors de ces trois jours \u00e9taient incommensurables. L\u2019une des choses qui m\u2019ont le plus marqu\u00e9, c\u2019est que peu importe notre diagnostic, nous vivons beaucoup d\u2019exp\u00e9riences similaires, peu importe l\u2019endroit o\u00f9 l\u2019on se trouve dans le monde. Il est clair que la recherche en sant\u00e9 ne r\u00e9pond pas \u00e0 nos besoins de fa\u00e7on efficace et durable. Il est \u00e9galement clair que d\u2019inclure les personnes qui ont une exp\u00e9rience v\u00e9cue d\u2019un sujet \u00e0 l\u2019\u00e9tude peut renforcer la recherche, la rendre plus significative, plus pertinente, et ainsi exercer une influence bien plus grande sur les personnes les plus touch\u00e9es.<\/p>\r\n

And I’ve been lucky to work with several patient partners now in advancing our research program and in giving us new ideas and new ways of doing our work…<\/em>Even when we’re working with animal models, we can still draw on lived experience to inform research.” – Nader Ghasemlou<\/em><\/p><\/blockquote>\r\n

The PxP conference can serve as an exemplar of how to meaningfully involve – through shared power – people with lived experience of pain or health conditions. The PxP website now also houses links to many free resources, shared by the steering committee and our esteemed speakers. Many of these resources were new to me and have already proved invaluable!<\/p>\r\n

While the conference was designed by and for patient partners, it is relevant to anyone who is interested in patient and public involvement in health research, including clinicians, researchers, caregivers, policymakers, funders, health systems administrators, educators, and public health officials. In order to facilitate such work in the health research and care community, PxP will soon be publishing peer-reviewed articles on our processes – the nuts and bolts of how the conference came together and how we worked collaboratively to bring it to fruition. We will also be sharing more blog posts and resources, so be sure to bookmark the site Web de PxP<\/a> dans vos favoris et de vous abonner \u00e0 l\u2019infolettre!<\/a>!<\/p>","protected":false},"excerpt":{"rendered":"

Guest blog with Joletta Belton<\/p>","protected":false},"author":5,"featured_media":2617,"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":"","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":[30],"tags":[],"class_list":["post-2614","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"yoast_head":"\nPxP: Partnering to Make Research Stronger - 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