{"id":551,"date":"2024-04-15T12:17:48","date_gmt":"2024-04-15T19:17:48","guid":{"rendered":"https:\/\/blogs.ubc.ca\/imhablog\/?p=551"},"modified":"2024-04-15T12:17:48","modified_gmt":"2024-04-15T19:17:48","slug":"one-thing-id-like-to-see-changed-as-a-result-of-pxp-un-changement-que-jaimerais-voir-a-la-suite-de-la-conference-pxp","status":"publish","type":"post","link":"https:\/\/blogs.ubc.ca\/imhablog\/2024\/04\/15\/one-thing-id-like-to-see-changed-as-a-result-of-pxp-un-changement-que-jaimerais-voir-a-la-suite-de-la-conference-pxp\/","title":{"rendered":"One thing I\u2019d like to see changed as a result of PxP \/ Un changement que j\u2019aimerais voir \u00e0 la suite de la conf\u00e9rence PxP"},"content":{"rendered":"

Le fran\u00e7ais suit \/ French follows<\/em><\/p>\n

By: Joletta Belton<\/p>\n

One of the things I really enjoyed during the course of the PxP: Partnering to Make Research Stronger conference was the lively Zoom chat discussions that took place during the presentations. To see these chats for yourself, they have been summarized and anonymized and are available on the\u00a0PxP Resource Hub<\/a>.<\/p>\n

There were also great questions asked in the Q&A, yet there wasn\u2019t always time for those questions to be answered in depth. I particularly liked this question: \u201cwhat is one thing you would like see changed after PxP?\u201d<\/p>\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\u2019s 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>\n

The need for building and sustaining relationships was a common theme throughout all three days of the conference. Some important questions surrounding this theme include: where does this relationship building start? Who should initiate it? How can relationship-building between researchers and communities\/people with health conditions be facilitated, resourced, supported, and sustained? Who is doing this well? Where can we improve?<\/p>\n

In the first session to kick off PxP: Partnering to Make Research Stronger (https:\/\/youtu.be\/Lf2TJmFRW24?si=1bEK92puH5h_rHRq<\/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, \u2018there\u2019s no such thing as a homogenous community anywhere\u2019. 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>\n

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

This includes being sure to include all voices, as was discussed on day three (https:\/\/youtu.be\/AC3zKsS37uU?si=CizLIO853V_VTjqv<\/a>) and echoed what Angela said on day 1, that no group is \u2018hard to reach\u2019, 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>\n

Sandra Jayacodi asked, in the Including All Voices Session, \u2018How about investing time and resources to building trust and relationship with communities?\u2019 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>\n

\u201cHaving funding that allows for pre-work and relationship building with communities. Funders for research have to proactively encourage and support inclusive research.\u201d Sandra Jayacodi<\/p><\/blockquote>\n

It is so important that patient and public involvement and engagement in research is founded on strong, trusting relationships. This work needs be inclusive and representative, and certainly cannot be tokenistic. Relationship building takes investment of time, resources, and effort, but the payoffs are more than worth it.<\/p>\n

\n

S\u2019il y a bien une chose que j\u2019ai ador\u00e9e de la conf\u00e9rence\u00a0PxP\u00a0Tisser des liens pour renforcer la recherche<\/em>, ce sont les discussions anim\u00e9es du clavardage\u00a0Zoom 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>\n

Les interrogations soulev\u00e9es lors de la p\u00e9riode de questions ont \u00e9galement \u00e9t\u00e9 tr\u00e8s pertinentes. Malheureusement, une r\u00e9ponse d\u00e9taill\u00e9e n\u2019a pas pu \u00eatre fournie pour chacune d\u2019entre elles, faute de temps. J\u2019ai toutefois trouv\u00e9 cette question particuli\u00e8rement int\u00e9ressante\u00a0: \u00ab\u00a0Quel changement voudriez-vous voir \u00e0 la suite de la conf\u00e9rence\u00a0PxP?\u00a0\u00bb<\/p>\n

Pour ma part, la r\u00e9ponse m\u2019est venue rapidement\u00a0: nouer plus de relations. Surtout entre les chercheurs et les personnes de la collectivit\u00e9 qui vivent avec le probl\u00e8me ou la maladie \u00e0 l\u2019\u00e9tude. Nous avons besoin de relations inclusives, diversifi\u00e9es et \u00e9quitables, o\u00f9 le pouvoir est partag\u00e9 (ou encore o\u00f9 les diff\u00e9rences de pouvoir sont au moins reconnues et transparentes) et o\u00f9 chacun est appr\u00e9ci\u00e9 pour ses connaissances, ses perspectives, ses comp\u00e9tences et ses exp\u00e9riences uniques.<\/p>\n

Le besoin de cr\u00e9er et d\u2019entretenir des relations est un th\u00e8me qui est revenu souvent lors des trois\u00a0jours de la conf\u00e9rence. Parmi les questions importantes \u00e0 ce sujet, mentionnons\u00a0: 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>\n

Lors de la premi\u00e8re s\u00e9ance de la conf\u00e9rence PxP\u00a0Tisser des liens pour renforcer la recherche<\/em> (https:\/\/www.youtube.com\/watch?v=Lf2TJmFRW24<\/a>, en anglais seulement), Angela\u00a0Ruddock a fait la distinction entre les collaborateurs du public et la participation communautaire. En effet, personne ne peut repr\u00e9senter un groupe en entier, et les groupes eux-m\u00eames sont h\u00e9t\u00e9rog\u00e8nes. Comme l\u2019a soulev\u00e9 Angela, \u00ab\u00a0une communaut\u00e9 homog\u00e8ne, \u00e7a n\u2019existe pas\u00a0\u00bb. Alors, lorsqu\u2019il s\u2019agit de cr\u00e9er des relations, il faut arr\u00eater de collaborer avec une seule personne qui pr\u00e9sente le probl\u00e8me \u00e0 l\u2019\u00e9tude, et commencer \u00e0 mobiliser et faire participer les communaut\u00e9s de gens pouvant mieux repr\u00e9senter la diversit\u00e9 inh\u00e9rente aux exp\u00e9riences, aux horizons, aux perspectives et aux connaissances.<\/p>\n

\u00ab Allons l\u00e0 o\u00f9 se trouvent les gens, et tissons des liens avec eux. \u00bb \u2013 Alma McCormick<\/p><\/blockquote>\n

Il s\u2019agit notamment de veiller \u00e0 inclure toutes les voix, comme mentionn\u00e9 \u00e0 la troisi\u00e8me journ\u00e9e (https:\/\/www.youtube.com\/watch?v=AC3zKsS37uU<\/a>, en anglais seulement). Cette s\u00e9ance a \u00e9galement r\u00e9it\u00e9r\u00e9 ce qu\u2019avait mentionn\u00e9 Angela le premier jour, c\u2019est-\u00e0-dire qu\u2019aucun groupe n\u2019est hors d\u2019atteinte; c\u2019est seulement que certains ont toujours \u00e9t\u00e9 n\u00e9glig\u00e9s et exclus. Par exemple, demander aux patients partenaires et aux membres de la communaut\u00e9 de venir \u00e0 la recherche plut\u00f4t que l\u2019inverse peut constituer une forme d\u2019exclusion. Les membres de certaines communaut\u00e9s peuvent ne pas se sentir en s\u00e9curit\u00e9 dans des milieux comme les h\u00f4pitaux, les syst\u00e8mes de sant\u00e9 ou les \u00e9tablissements d\u2019enseignement. Il faut donc que les chercheurs se rendent dans les communaut\u00e9s afin de tisser des liens de confiance.<\/p>\n

Lors de la s\u00e9ance\u00a0Inclure toutes les voix<\/em>, Sandra\u00a0Jayacodi a pos\u00e9 la question suivante\u00a0: \u00ab\u00a0Pourquoi ne pas investir du temps et des ressources dans l\u2019\u00e9tablissement de relations de confiance avec les communaut\u00e9s?\u00a0\u00bb Ce genre de d\u00e9marche demande du temps, des efforts et des ressources. Nous devons \u00e9viter la diversit\u00e9 de fa\u00e7ade, appliquer l\u2019intersectionnalit\u00e9 et inclure et repr\u00e9senter des points de vue issus d\u2019une plus grande diversit\u00e9 de personnes.<\/p>\n

\u00ab\u00a0Il faut disposer d\u2019un financement qui permet d\u2019effectuer le travail pr\u00e9paratoire et d\u2019\u00e9tablir des relations avec les communaut\u00e9s. Les bailleurs de fonds de la recherche doivent encourager et soutenir de fa\u00e7on proactive la recherche inclusive.\u00a0\u00bb \u2013\u00a0Sandra\u00a0Jayacodi<\/p><\/blockquote>\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>\n","protected":false},"excerpt":{"rendered":"

Le fran\u00e7ais suit \/ French follows By: Joletta Belton One of the things I really enjoyed during the course of the PxP: Partnering to Make Research Stronger conference was the lively Zoom chat discussions that took place during the presentations. … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":96106,"featured_media":552,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[],"class_list":["post-551","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-engagement"],"_links":{"self":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts\/551","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/users\/96106"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/comments?post=551"}],"version-history":[{"count":1,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts\/551\/revisions"}],"predecessor-version":[{"id":553,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts\/551\/revisions\/553"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/media\/552"}],"wp:attachment":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/media?parent=551"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/categories?post=551"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/tags?post=551"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}