{"id":2682,"date":"2024-03-14T15:41:31","date_gmt":"2024-03-14T22:41:31","guid":{"rendered":"https:\/\/pxphub.org\/?p=2682"},"modified":"2024-03-18T13:01:50","modified_gmt":"2024-03-18T20:01:50","slug":"one-thing-id-like-to-see-changed-as-a-result-of-pxp","status":"publish","type":"post","link":"https:\/\/pxphub.org\/fr\/one-thing-id-like-to-see-changed-as-a-result-of-pxp\/","title":{"rendered":"Un changement que j\u2019aimerais voir \u00e0 la suite de la conf\u00e9rence PxP"},"content":{"rendered":"

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

S\u2019il y a bien une chose que j\u2019ai ador\u00e9e de la conf\u00e9rence PxP Tisser des liens pour renforcer la recherche, ce sont les discussions anim\u00e9es du clavardage Zoom pendant les pr\u00e9sentations. Si vous voulez y jeter un coup d\u2019\u0153il, elles ont \u00e9t\u00e9 r\u00e9sum\u00e9es et anonymis\u00e9es sur la plateforme de ressources de PxP<\/a>.<\/p>\r\n

There were also great questions asked in the Q&A, yet there wasn’t always time for those questions to be answered in depth. I particularly liked this question: “what is one thing you would like see changed after PxP?”<\/p>\r\n

The answer for me came quickly: Building more relationships. Specifically relationship-building between researchers and people in the community who live with whatever it is that’s being studied. Relationships that are inclusive, diverse, and equitable, where power is shared (or power differentials are at least acknowledged and transparent) and everyone is valued for the unique knowledge, perspectives, skills, and experiences they bring.<\/p>\r\n

Le besoin de cr\u00e9er et d\u2019entretenir des relations est un th\u00e8me qui est revenu souvent lors des trois jours de la conf\u00e9rence. Parmi les questions importantes \u00e0 ce sujet, mentionnons : par o\u00f9 commencer? Qui devrait entreprendre les d\u00e9marches? Comment encourager, financer, soutenir et maintenir l\u2019\u00e9tablissement de relations entre les chercheurs et les communaut\u00e9s ou personnes ayant des probl\u00e8mes de sant\u00e9? Sur qui prendre exemple? Quelles pistes d\u2019am\u00e9lioration explorer?<\/p>\r\n

Lors de la premi\u00e8re s\u00e9ance de la conf\u00e9rence PxP Tisser des liens pour renforcer la recherche (https:\/\/www.youtube.com\/watch?v=Lf2TJmFRW24, en anglais seulement<\/a>), Angela Ruddock made the distinction between public contributors and community engagement. No one person can ever represent an entire group, and groups themselves are heterogeneous. As Angela said, ‘there’s no such thing as a homogenous community anywhere’. So when it comes to relationship-building we need to move beyond thinking in terms of just partnering with one person with pain on a particular study, to engaging and involving communities of people who can better represent the inherent diversity of experiences, backgrounds, perspectives, and insights.<\/p>\r\n

“Go to where the people are at, develop a relationship with them.” Alma McCormick<\/p><\/blockquote>\r\n

Il s\u2019agit notamment de veiller \u00e0 inclure toutes les voix, comme mentionn\u00e9 \u00e0 la troisi\u00e8me journ\u00e9e (https:\/\/youtu.be\/AC3zKsS37uU?si=CizLIO853V_VTjqv<\/a>) and echoed what Angela said on day 1, that no group is ‘hard to reach’, they have been historically ignored and excluded. This exclusion can take the form of requiring patient partners and community members to come to the research, rather than the research going to the patient partners or into the community. Environments like the hospital, or health systems or academic systems and institutions, can actually be unsafe for some of these communities to come into, so there is a need for researchers to go into the communities to establish relationships and build trust.<\/p>\r\n

Sandra Jayacodi asked, in the Including All Voices Session, ‘How about investing time and resources to building trust and relationship with communities?’ This sort of relationship building takes time, effort, and resources. We must avoid tokenism and embrace intersectionality and include and represent more diverse perspectives and peoples.<\/p>\r\n

“Having funding that allows for pre-work and relationship building with communities. Funders for research have to proactively encourage and support inclusive research.” Sandra Jayacodi<\/p><\/blockquote>\r\n

Il est crucial que la participation et la mobilisation des patients et du public en recherche reposent sur des relations de confiance solides. Les efforts se doivent d\u2019\u00eatre inclusifs et repr\u00e9sentatifs, et ne peuvent se permettre d\u2019\u00eatre purement symboliques. Tisser des liens requiert temps, ressources et efforts, mais le jeu en vaut certainement la chandelle.<\/p>","protected":false},"excerpt":{"rendered":"

Guest blog with Joletta Belton<\/p>","protected":false},"author":5,"featured_media":2685,"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":[30,1],"tags":[],"class_list":["post-2682","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","category-uncategorized"],"yoast_head":"\nOne thing I\u2019d like to see changed as a result of PxP - 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