{"id":748,"date":"2025-09-24T09:39:11","date_gmt":"2025-09-24T16:39:11","guid":{"rendered":"https:\/\/blogs.ubc.ca\/imhablog\/?p=748"},"modified":"2025-09-24T09:39:11","modified_gmt":"2025-09-24T16:39:11","slug":"co-designing-patient-oriented-research-training-building-on-existing-resources","status":"publish","type":"post","link":"https:\/\/blogs.ubc.ca\/imhablog\/2025\/09\/24\/co-designing-patient-oriented-research-training-building-on-existing-resources\/","title":{"rendered":"Co-designing patient oriented research training building on existing resources"},"content":{"rendered":"

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

Written by Linda Wilhelm (Patient Partner, MSSU) and Lisa MacDougall (Patient Engagement Coordinator, MSSU)<\/em><\/p>\n

Our approach to Patient-Oriented Research Training (POR) at the Maritime Strategy for Patient Oriented Research Support Unit (MSSU) has been to draw on the excellent work being done across Canada. The MSSU is one of 11 SUPPORT Units that form part of the\u00a0Strategy for Patient-Oriented Research (SPOR)<\/a>, a Canadian Institutes of Health Research (CIHR) initiative that is match-funded by the provinces. The MSSU is the only\u00a0SUPPORT Unit<\/a>\u00a0that serves more than one province, offering expertise, training, and resources to help engage people with lived experience in health research across New Brunswick, Nova Scotia and Prince Edward Island.<\/p>\n

Over the past few years, there has been a proliferation of resources, tools, and information about patient engagement, but there have been few opportunities to really engage in dialogue in a deeper way around the actual practice of POR within our local context. We were very excited when we saw that the Canadian Institutes of Health Research’s (CIHR) Institute of Musculoskeletal Health and Arthritis (IMHA) had developed a set of online, self-directed, free modules applicable to any research where patient partners are engaged! The How-to Guide for Patient Engagement in Research<\/em><\/a> was led by IMHA\u2019s Patient Engagement Research Ambassadors (PERA). The modules are an excellent resource for anyone wanting to learn more about patient-oriented research and engaging patient partners throughout the research process.<\/p>\n

\u201cIn the decades of being a patient partner in research I have seen research networks use their funding to develop training materials instead of building on what has already been created and not waste precious resources and time.\u201d \u2013 Linda Wilhelm, MSSU Patient\/Public Partner<\/em><\/p>\n

When we saw what was offered, we reached out to three MSSU Patient\/Public Partners to gauge their interest in co-designing a practicum.<\/p>\n

We wanted to move away from a lecture approach and allow more time for dialogue between participants and we wanted to use the CEPPP Learning Together: Evaluation Framework for Patient and Public Engagement in Research<\/em><\/a> to provide practical guidance for doing patient engagement. We also introduce participants to the MSSU, including our Consult Service<\/a>, which is the next step in the learning journey for researchers in the Maritimes. Completion of the IMHA modules is a prerequisite for the MSSU Patient Oriented Research Practicum. This ensures an understanding of the concepts of patient-oriented research and patient engagement.<\/p>\n

Co-facilitated by the Patient Engagement Coordinator, the Capacity Development Coordinator and one Patient Partner, the Practicum really centers around the Patient Partner\u2019s experiences as partners in research. They can adapt portions of the session to reflect their own real-world experience in specific projects and share with the participants examples of where they were meaningfully engaged.\u00a0 Participants can ask questions about their own work \u2013 and this is where the Patient Partner\u2019s knowledge really shines! In our evaluation, we always ask participants what they will remember most:<\/p>\n

“It’s a tough one to answer because the session was quite informative! I think one of my biggest takeaways is that maintaining consistent communication with PPs [patient partners] is key for a successful POR project. Also, I loved hearing the firsthand experiences of being a PP from Linda.\u201d<\/em> \u2013 Zenna Evans, POR Practicum Participant, April 2025<\/p>\n

We provide the scaffolding, but the Patient Partners tailor the message in a way that is meaningful for them.<\/p>\n

Although created to support people doing patient-oriented research in the Maritimes, the MSSU POR Practicum is open to everyone and is offered about 10 times per year. It has been delivered 16 times since it was launched in 2023, with 189 participants attending 15 English sessions and 10 participants attending 1 French session. Together, the CIHR-IMHA modules, followed by our POR Practicum, provide a solid foundation to get people started on their POR learning journey.<\/p>\n

\n

R\u00e9dig\u00e9 par Linda\u00a0Wilhelm (patiente partenaire, USSM) et Lisa\u00a0MacDougall (coordonnatrice de la mobilisation des patients, USSM)<\/em><\/p>\n

La formation en recherche ax\u00e9e sur le patient (RAP) \u00e0 l\u2019Unit\u00e9 de soutien de la SRAP des Maritimes (USSM) prend appui sur l\u2019excellent travail effectu\u00e9 en la mati\u00e8re partout au Canada. L\u2019USSM est l\u2019une des 11\u00a0unit\u00e9s de soutien qui font partie de la Strat\u00e9gie de recherche ax\u00e9e sur le patient (SRAP), une initiative des Instituts de recherche en sant\u00e9 du Canada\u00a0(IRSC) \u00e0 laquelle les provinces et territoires fournissent un financement paritaire. L\u2019USSM est la seule unit\u00e9 qui dessert plus d\u2019une province. En effet, elle offre expertise, formation et ressources pour aider \u00e0 faire participer les personnes ayant une exp\u00e9rience concr\u00e8te \u00e0 la recherche en sant\u00e9 au Nouveau-Brunswick, en Nouvelle-\u00c9cosse et \u00e0 l\u2019\u00cele-du-Prince-\u00c9douard.<\/p>\n

Au cours des derni\u00e8res ann\u00e9es, bon nombre de ressources, d\u2019outils et d\u2019information sur la mobilisation des patients ont vu le jour, mais il y a eu peu d\u2019occasions d\u2019engager un r\u00e9el dialogue sur ce que signifie concr\u00e8tement la RAP dans notre contexte local. Nous avons donc \u00e9t\u00e9 tr\u00e8s heureuses de constater que l\u2019Institut de l\u2019appareil locomoteur et de l\u2019arthrite\u00a0(IALA) des IRSC avait cr\u00e9\u00e9 une s\u00e9rie de modules d\u2019autoformation pour la recherche faisant appel \u00e0 des patients partenaires, le tout en ligne et gratuit! Le groupe des ambassadeurs de la recherche ax\u00e9e sur le patient (ARAP) de l\u2019IALA a \u00e9t\u00e9 \u00e0 la barre de la conception de ces modules<\/a>. Il s\u2019agit d\u2019une excellente ressource pour quiconque souhaite en apprendre davantage sur la RAP et mobiliser des patients partenaires tout au long du processus de recherche, quel que soit le domaine.<\/p>\n

\u00ab\u00a0Patiente partenaire depuis des dizaines d\u2019ann\u00e9es, j\u2019ai constat\u00e9 que de nombreux r\u00e9seaux de recherche puisent dans leurs fonds pour cr\u00e9er leur propre mat\u00e9riel de formation, alors que s\u2019offrent d\u00e9j\u00e0 \u00e0 eux des outils qui leur permettraient d\u2019\u00e9viter de gaspiller des ressources et du temps pr\u00e9cieux.\u00a0\u00bb \u2013 Linda\u00a0Wilhelm, patiente et membre du public partenaire de l\u2019USSM<\/em><\/p>\n

Inspir\u00e9 par ce qui \u00e9tait offert, l\u2019USSM a fait appel \u00e0 trois de ses patients et membres du public partenaires pour contribuer \u00e0 la conception d\u2019un stage pratique sur la RAP.<\/p>\n

Nous voulions rompre avec l\u2019enseignement magistral afin de privil\u00e9gier le dialogue entre les participants, tout en mettant \u00e0 profit les conseils du cadre \u00ab\u00a0Apprendre ensemble\u00a0\u00bb pour l\u2019\u00e9valuation de la mobilisation des patients et du public en recherche<\/em><\/a>. Notre objectif \u00e9tait aussi de mieux faire conna\u00eetre l\u2019USSM aux participants, notamment son service de consultation (en anglais seulement)<\/a> qui fait partie du parcours d\u2019apprentissage des chercheurs dans les Maritimes. Ainsi, les modules de l\u2019IALA sont un pr\u00e9requis pour participer au stage pratique sur la RAP de l\u2019USSM, puisqu\u2019ils permettent aux participants de bien comprendre les principaux concepts de la RAP et de la mobilisation des patients.<\/p>\n

Coanim\u00e9 par la coordonnatrice de la mobilisation des patients, la coordonnatrice du renforcement des capacit\u00e9s et une patiente partenaire, ce stage pratique s\u2019articule vraiment autour des exp\u00e9riences v\u00e9cues par les patients en tant que partenaires dans la recherche. Les animatrices peuvent adapter des parties de la s\u00e9ance \u00e0 leur propre exp\u00e9rience dans le cadre de projets pr\u00e9cis et donner aux participants des exemples illustrant ce que signifie une v\u00e9ritable mobilisation. De plus, les participants peuvent poser des questions se rapportant \u00e0 leur propre travail, et c\u2019est l\u00e0 que les connaissances des patients partenaires sont vraiment mises en valeur! Apr\u00e8s le stage, nous demandons toujours aux participants ce qu\u2019ils retiennent le plus\u00a0de cette s\u00e9ance d\u2019apprentissage\u00a0:<\/p>\n

\u00ab\u00a0Il est difficile de r\u00e9pondre \u00e0 cette question, car toute la s\u00e9ance a \u00e9t\u00e9 tr\u00e8s instructive! Ce que je retiens le plus cependant est que le maintien d\u2019une communication coh\u00e9rente avec les patients partenaires est essentiel \u00e0 la r\u00e9ussite d\u2019un projet de RAP. J\u2019ai \u00e9galement ador\u00e9 entendre Linda me raconter son exp\u00e9rience personnelle \u00e0 titre de patiente partenaire.\u00a0\u00bb \u2013 Zenna\u00a0Evans, participante au stage pratique sur la RAP, avril\u00a02025<\/p>\n

Nous fournissons le cadre, mais il revient aux patients partenaires de personnaliser le message de la mani\u00e8re qui leur semble la plus appropri\u00e9e.<\/p>\n

Bien qu\u2019il ait \u00e9t\u00e9 cr\u00e9\u00e9 pour appuyer les personnes qui font de la RAP dans les Maritimes, le stage pratique de l\u2019USSM est ouvert \u00e0 tous et est offert environ 10\u00a0fois par ann\u00e9e. Depuis son lancement en\u00a02023, il y a eu 16\u00a0s\u00e9ances; 189 participants ont assist\u00e9 \u00e0 l\u2019une des 15\u00a0s\u00e9ances en anglais et 10 \u00e0 celle pr\u00e9sent\u00e9e en fran\u00e7ais. Ensemble, les modules de formation de l\u2019IALA des IRSC, suivis de nos stages pratiques sur la RAP, constituent une base solide pour donner aux participants les moyens d\u2019apprivoiser ce type de recherche.<\/p>\n","protected":false},"excerpt":{"rendered":"

Le fran\u00e7ais suit \/ French follows Written by Linda Wilhelm (Patient Partner, MSSU) and Lisa MacDougall (Patient Engagement Coordinator, MSSU) Our approach to Patient-Oriented Research Training (POR) at the Maritime Strategy for Patient Oriented Research Support Unit (MSSU) has been … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":96106,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-748","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts\/748","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=748"}],"version-history":[{"count":1,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts\/748\/revisions"}],"predecessor-version":[{"id":749,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts\/748\/revisions\/749"}],"wp:attachment":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/media?parent=748"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/categories?post=748"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/tags?post=748"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}