{"id":13059,"date":"2022-04-22T09:46:25","date_gmt":"2022-04-22T13:46:25","guid":{"rendered":"https:\/\/ssaquebec.ca\/en\/news\/do-you-know-the-patient-partner-community-experiences\/"},"modified":"2026-10-09T09:13:06","modified_gmt":"2026-10-09T13:13:06","slug":"do-you-know-the-patient-partner-community-experiences","status":"publish","type":"post","link":"https:\/\/ssaquebec.ca\/en\/news\/do-you-know-the-patient-partner-community-experiences\/","title":{"rendered":"Are you familiar with the &#8220;Exp\u00e9riences&#8221; healthcare partner community?"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/ssaquebec.ca\/en\/news\/do-you-know-the-patient-partner-community-experiences\/\" target=\"_blank\" rel=\"noreferrer noopener\">The Exp\u00e9riences community<\/a> brings together health partners\u2014patients, caregivers, and citizen partners\u2014who are actively committed to demystifying the individual and collective roles in health. These individuals contribute at the level of patient partnership governance, at the strategic level, and directly within research, care and service, prevention, and education teams (in community, school, and academic settings). <\/p>\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/ssaquebec.ca\/en\/are-you-a-patient\/\" target=\"_blank\" rel=\"noreferrer noopener\">Want to get involved?<\/a><\/div>\n<\/div>\n\n<div style=\"height:27px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">Governance of the community<\/h3>\n    \n\n<p class=\"wp-block-paragraph\"><strong>&#8220;Experiences&#8221;<\/strong> is a community initiated and led by patients, service users, their loved ones, and citizen partners. It brings together people who are interested in and involved in partnerships within the healthcare system.  <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Co-leaders<\/strong>: Catherine Wilhelmy and Karina Pr\u00e9vost<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Executive Committee<\/strong>: Catherine Wilhelmy, Karina Pr\u00e9vost, Louis Lochhead, Samira Amil, and Zamzam Akbaraly<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"500\" height=\"500\" src=\"https:\/\/ssaquebec.ca\/wp-content\/uploads\/2024\/02\/expriences_structure.png\" alt=\"\" class=\"wp-image-18941\" style=\"width:280px;height:auto\" srcset=\"https:\/\/ssaquebec.ca\/wp-content\/uploads\/2024\/02\/expriences_structure.png 500w, https:\/\/ssaquebec.ca\/wp-content\/uploads\/2024\/02\/expriences_structure-300x300.png 300w, https:\/\/ssaquebec.ca\/wp-content\/uploads\/2024\/02\/expriences_structure-150x150.png 150w\" sizes=\"auto, (max-width: 500px) 100vw, 500px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div style=\"height:62px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"has-text-align-left wp-block-paragraph\">Members of Exp\u00e9riences are involved in the community at various levels of participation: <strong>the Executive Board, <\/strong><strong>the Assembly, and <\/strong>the<strong> &#8220;Carrefour&#8221;.<\/strong> <\/p>\n<\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>The Executive\u2019s role<\/strong> encompasses three aspects: administrative, strategic, and operational. It is responsible for directing and overseeing activities, keeping the organization\u2019s mission up to date, and ensuring that its actions align with the guidelines of Unit\u00e9 de soutien SSA Qu\u00e9bec and its partners. The Executive Board, composed of five community members, proposes strategic directions to the Assembly and sets priorities in its annual work plan based on available resources.  <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>The Assembly<\/strong> of Exp\u00e9riences is composed of a small number of partners, generally about twenty people. This group is formed to ensure optimal diversity among its members, both geographically (provincially) and in terms of their lived experiences. It is a community of practice that plays a reflective, advisory, and decision-making role.  <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> Members come from a variety of backgrounds:<\/p>\n\n\n<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Axes de l\u2019unit\u00e9 <\/li>\n\n\n\n<li>Various Research Centers and Institutes<\/li>\n\n\n\n<li>CISSSs or CIUSSSs throughout Quebec<\/li>\n\n\n\n<li>Other Provincial Committees<\/li>\n\n\n\n<li>Independent Members<\/li>\n<\/ul>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><strong>The Exp\u00e9riences Community Hub<\/strong> is made up of partners, whether or not they are patients. These individuals are registered with our various communication networks as well as our portal. They are interested in learning and getting involved through partnerships. All of these individuals receive our communications and are invited to our webinars and forums. They may also be contacted to participate in more targeted partnership activities, depending on their availability and interest.    <\/p>\n\n\n<\/div>\n\n                    \n\n<h2 class=\"wp-block-heading\">History<\/h2>\n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">The Origins: A Group Born Out of Research (2017\u20132021) <\/h3>\n    \n\n<p class=\"wp-block-paragraph\">The Experiences Community traces its origins to 2017, within the Unit\u00e9 de soutien SSA Qu\u00e9bec (Quebec&#8217;s SPOR support unit) during the first phase of funding from the Canadian Institutes of Health Research (CIHR), as part of projects supported by the Partnership Track and the Centre d\u2019excellence sur le partenariat avec les patients et le public (CEPPP).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Its first fifteen members, drawn from diverse backgrounds and different regions of Quebec, share a deep conviction: experiential knowledge is essential to the quality, relevance, and equity of health research. The tools, training, and knowledge developed during this initial phase laid the solid foundation on which the practice still rests today. They also contributed to the emergence of credible, structured patient leadership, paving the way for the creation of a community now recognized as a key player in health partnerships in Quebec.  <\/p>\n\n\n<\/div>\n\n                    \n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">The Shift to a Learning Health System (LHS) and the Expansion of the Vision (2021\u20132025) <\/h3>\n    \n\n<p class=\"wp-block-paragraph\">The group realizes that, in order to support the transformation of the system as a whole, it is necessary to include all forms of partnership within the network and to incorporate them into the transformation of the network into a learning health system\u2014 <em>with and for patients, service users, their loved ones, and citizen partners\u2014who will eventually be referred to as \u201cHealth Partners.\u201d<\/em><\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"454\" height=\"255\" src=\"https:\/\/ssaquebec.ca\/wp-content\/uploads\/2022\/04\/image-6.png\" alt=\"5_spheres_partnership_patient_experiences_ssaquebec\" class=\"wp-image-23449\" srcset=\"https:\/\/ssaquebec.ca\/wp-content\/uploads\/2022\/04\/image-6.png 454w, https:\/\/ssaquebec.ca\/wp-content\/uploads\/2022\/04\/image-6-300x169.png 300w\" sizes=\"auto, (max-width: 454px) 100vw, 454px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<p class=\"wp-block-paragraph\">The community has chosen to open its ranks to all healthcare partners involved in the five main areas of partnership: research, education, governance, care and services, and partnerships with communities.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The goal is clear: to enable all health care partners to share their experiences and knowledge in order to build a shared understanding of partnership at the system level.<\/p>\n<\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\">It is in this spirit of openness that the community has chosen its new name: <strong>\u201cExp\u00e9riences<\/strong>\u201d (experiences in French). A name that evokes the richness and power of lived experiences, the diversity of life paths, the importance of cross-disciplinary knowledge, and the value of lessons learned from human experience in health partnerships. <\/p>\n\n\n<\/div>\n\n                    \n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">Toward Autonomy: Building the Structure to Take Action  <\/h3>\n    \n\n<p class=\"wp-block-paragraph\">Seeking to establish its own capacity for action, the group submitted a funding request to the Unit\u00e9 de soutien SSA Qu\u00e9bec in order to strengthen its internal organization and begin developing a structured program of collective projects. The request was approved and marked a decisive turning point. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Exp\u00e9riences has become the first community of healthcare partners in Quebec to break free from professional oversight and govern itself, set its own priorities, manage its budget, and coordinate its activities.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"674\" height=\"350\" src=\"https:\/\/ssaquebec.ca\/wp-content\/uploads\/2022\/04\/image-7.png\" alt=\"\" class=\"wp-image-23450\" srcset=\"https:\/\/ssaquebec.ca\/wp-content\/uploads\/2022\/04\/image-7.png 674w, https:\/\/ssaquebec.ca\/wp-content\/uploads\/2022\/04\/image-7-300x156.png 300w\" sizes=\"auto, (max-width: 674px) 100vw, 674px\" \/><\/figure>\n\n\n<\/div>\n\n                    \n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">Today&#039;s Experiences: A Learning Community in Action at the Provincial Level <\/h3>\n    \n\n<p class=\"wp-block-paragraph\">Thanks to its strong organizational structure, the Experiences Community now has nearly 300 members, 22 of whom serve on its Assembly. This unprecedented level of engagement has enabled healthcare partners to play an active role in shaping the evolution of our healthcare ecosystem. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">For example:<\/p>\n\n\n<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Healthcare<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Inclusion of patient partners on steering committees (for example, the Unit\u00e9 de soutien SSA Qu\u00e9bec&#8217;s steering committee)<\/li>\n<\/ul>\n<\/div><\/li>\n\n\n\n<li>Search<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Recruiting patients and patient researchers for research teams<\/li>\n<\/ul>\n<\/div><\/li>\n\n\n\n<li>Education<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Incorporating Patient Partners into the Teaching Curricula of the Faculty of Medicine at Universit\u00e9 de Montr\u00e9al<\/li>\n<\/ul>\n<\/div><\/li>\n\n\n\n<li>Governance<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>In 2024, 12 members of Exp\u00e9riences participated in the work of the Sant\u00e9 Qu\u00e9bec Transition Committee<\/li>\n<\/ul>\n<\/div><\/li>\n\n\n\n<li>Partnerships with Communities<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Existence of associations of patients and citizens (<a href=\"https:\/\/vitam.ulaval.ca\/\">VITAM<\/a>, <a href=\"https:\/\/diabetesaction.ca\/people\/role\/patient-partner\/\">DAC<\/a>)<\/li>\n<\/ul>\n<\/div><\/li>\n<\/ul>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/ssaquebec.ca\/en\/news\/5-ways-patient-partners-can-be-involved\/\">Learn more<\/a><\/p>\n\n\n<\/div>\n\n                    \n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">A First: The Position Statement on Health Partnerships<\/h3>\n    \n\n<p class=\"wp-block-paragraph\">In the wake of this recognition, Exp\u00e9riences led the drafting and publication of a <a href=\"https:\/\/ssaquebec.ca\/en\/news\/position-statement-on-partnership-in-health-and-social-services\/\">Position Statement on Health Partnerships<\/a>\u2014a collaborative effort involving more than 50 contributors from diverse backgrounds, without whom this work would not have been possible. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">This document also breaks new ground with a detail that carries significant symbolic weight: <strong>for the first time, the partners themselves are defining the priorities to be addressed and the structure of the content, and are approving the various suggestions, modifications, and additions to the document<\/strong>. This task is usually reserved for professional staff, research teams, organizations, or institutions. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The Statement provides a detailed overview of the current state of partnership in Quebec and sets forth five key recommendations for strengthening and sustainably embedding partnership in practices, structures, and policies. It now serves as an important reference for organizations seeking to deepen their understanding of partnership. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The result of a collective effort, this document helps fuel the collective momentum aimed at making partnership a natural part of the organizational culture and a true driver of transformation in the health care system.<\/p>\n\n\n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">A unique and complementary community<\/h3>\n    \n\n<p class=\"wp-block-paragraph\">Since 2017, Exp\u00e9riences has evolved from a group of research partners into a structured and influential community of citizens committed to transforming Quebec\u2019s healthcare system. While the CEPPP remains the partnership\u2019s hub for scientific research, Exp\u00e9riences serves as its living, embodied voice: that of the people who make up the partnership\u2014on the ground, in institutions, laboratories, governance forums, and the public sphere.  <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">By breaking away from the traditional model in which professionals manage patient participation, Exp\u00e9riences has demonstrated that a collective of autonomous partners can be an agent of change, a source of meaning, and a driving force for coherence. <strong>Today, it embodies a mature and inclusive vision of partnership: that of a learning system that listens to, recognizes, and acts in concert with the people it serves.<\/strong><\/p>\n\n\n<\/div>\n\n                    \n\n\n<\/div>\n\n                    \n\n<div style=\"height:55px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<h3 class=\"wp-block-heading\">Presentation of the &#8220;Experiences&#8221; Community by Its Co-Leaders<\/h3>\n\n<p class=\"wp-block-paragraph\">In the following video, you&#8217;ll hear Karina Pr\u00e9vost and Catherine Wilhelmy introduce the Exp\u00e9riences community. <\/p>\n\n<details class=\"wp-block-details is-layout-flow wp-block-details-is-layout-flow\"><summary><strong>You can also view the video summary here:<\/strong><\/summary>\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The Community <em><strong>Experiences<\/strong><\/em> is a dynamic, self-managed Quebec initiative dedicated to <strong>health partnerships<\/strong>. Here are additional details about how it operates and the impact it has: <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Origin:<\/strong> The community evolved from a former community of practice for patient research partners, initially led by patient partner Alexandre Gr\u00e9goire and supported by figures such as Dr. Antoine Boivin.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Embedded Governance:<\/strong> The community is led by and for <strong>health partners<\/strong> (patients and their caregivers, citizens). It is supported by an executive committee of about 20 partners involved in more than 70 health-related organizations in Quebec. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Broad Scope:<\/strong> The partnership encompasses five major areas of focus: <strong>governance<\/strong>, <strong>care and services<\/strong>, <strong>prevention<\/strong>,<strong>education<\/strong> (for future clinicians), and <strong>research<\/strong>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Outreach and Tools<\/strong>: With more than 3,000 people involved, the community produces a <strong>digital magazine<\/strong> (8 issues had already been published at the time of recording), maintains an active presence on social media (particularly LinkedIn and Facebook), and is working on a <strong>matching platform<\/strong> to facilitate connections between healthcare professionals and partners.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>National Vision:<\/strong> The co-directors of Exp\u00e9riences are actively seeking to build bridges with Francophone communities across Canada. They aim to break down barriers between practices and organize a <strong>national forum<\/strong> to share expertise beyond Quebec\u2019s borders. <\/p>\n<\/details>\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Session 2: Rencontre avec Exp\u00e9riences: Une communaut\u00e9 francophone de partenariat en sant\u00e9 au Canada\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/cF30ATX7qkw?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n<div style=\"height:76px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<div class=\"wp-block-cover is-light\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"567\" class=\"wp-block-cover__image-background wp-image-23464 size-large\" alt=\"magazines_experiences_partenariatpatient_quebec\" src=\"https:\/\/ssaquebec.ca\/wp-content\/uploads\/2026\/10\/mag-exp-1024x567.jpg\" data-object-fit=\"cover\" srcset=\"https:\/\/ssaquebec.ca\/wp-content\/uploads\/2026\/10\/mag-exp-1024x567.jpg 1024w, https:\/\/ssaquebec.ca\/wp-content\/uploads\/2026\/10\/mag-exp-300x166.jpg 300w, https:\/\/ssaquebec.ca\/wp-content\/uploads\/2026\/10\/mag-exp-768x425.jpg 768w, https:\/\/ssaquebec.ca\/wp-content\/uploads\/2026\/10\/mag-exp-1536x850.jpg 1536w, https:\/\/ssaquebec.ca\/wp-content\/uploads\/2026\/10\/mag-exp.jpg 1920w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><span aria-hidden=\"true\" class=\"wp-block-cover__background has-background-dim\" style=\"background-color:#dcd6d0\"><\/span><div class=\"wp-block-cover__inner-container is-layout-constrained wp-block-cover-is-layout-constrained\">\n<h2 class=\"wp-block-heading has-text-align-center has-large-font-size\"><\/h2>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-fe48e5de wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/ssaquebec.ca\/en\/news\/experiences-magazine-living-with-illness-and-care\/\" target=\"_blank\" rel=\"noreferrer noopener\">See the &#8220;Experiences&#8221; magazines: Patients Share Their Stories<\/a><\/div>\n<\/div>\n<\/div><\/div>\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\"><\/div>\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Exp\u00e9riences is the only self-managed healthcare partner community in Quebec. It has 300 members. Its executive committee works with more than 70 health-related organizations and has, to date, contributed to more than 240 scientific publications and more than 120 local and international events.   <\/p>\n","protected":false},"author":2,"featured_media":22175,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_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":"17710,16205,12872,16667,17054,12890","footnotes":""},"categories":[40],"tags":[113],"article-type":[139,50],"class_list":["post-13059","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-partnership","article-type-other-publications","article-type-publications-en"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Are you familiar with the &quot;Exp\u00e9riences&quot; healthcare partner community? 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