{"id":16667,"date":"2023-05-05T13:32:03","date_gmt":"2023-05-05T17:32:03","guid":{"rendered":"https:\/\/ssaquebec.ca\/en\/news\/roadmap-for-partnering-with-patients-families-and-caregivers-in-a-learning-health-system\/"},"modified":"2026-08-10T14:22:48","modified_gmt":"2026-08-10T18:22:48","slug":"roadmap-for-partnering-with-patients-families-and-caregivers-in-a-learning-health-system","status":"publish","type":"post","link":"https:\/\/ssaquebec.ca\/en\/news\/roadmap-for-partnering-with-patients-families-and-caregivers-in-a-learning-health-system\/","title":{"rendered":"Roadmap for partnering with patients, families, and caregivers in a Learning Health System"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">How can we co-construct a learning health system with users and their families? How does this partnership unfold at different stages of a learning cycle?<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>This roadmap was co-designed with 37 patients, family members, and caregivers<\/strong>. It aims to clarify the roles of patients, family members, and caregivers within an LHS and describe how they can, individually and collectively, contribute to its multiple dimensions. At each step of the learning cycle, discover, from the perspective of users and close partners<\/p>\n\n\n<div class=\"wp-block-list\">\n<ol class=\"wp-block-list\">\n<li>Roles<\/li>\n\n\n\n<li>Winning conditions<\/li>\n\n\n\n<li>Challenge<\/li>\n<\/ol>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><em>The roadmap was created by the Centre of Excellence on Partnership with Patients and the Public and supported by the Unit\u00e9 de soutien SSA Qu\u00e9bec<\/em><\/p>\n\n\n\n<div style=\"height:26px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<blockquote class=\"wp-block-quote has-text-align-center is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\"><\/p>\n<cite>\u201cSimply put, the ultimate goal  of an LHS should be to provide better care by putting people  at the heart of health.\u201d<\/cite><\/blockquote>\n\n\n\n<div style=\"height:55px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">Authors and Acknowledgements<\/h3>\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<p class=\"wp-block-paragraph\"><strong>Editors<\/strong><\/p>\n\n\n<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Myriam Fournier-Tombs<\/li>\n\n\n\n<li>Sylvain B\u00e9dard<\/li>\n<\/ul>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><strong>Scientific direction<\/strong><\/p>\n\n\n<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Audrey L\u2019Esp\u00e9rance<\/li>\n\n\n\n<li>Matthew Menear<\/li>\n<\/ul>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><strong>Research assistance<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u2022 Marie-Anne Filion<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"wp-block-paragraph\"><strong>Patient Partner advisor<\/strong><\/p>\n\n\n<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Christian Chabot<\/li>\n<\/ul>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><strong>Graphic design<\/strong><\/p>\n\n\n<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Christine St-Onge<\/li>\n<\/ul>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><strong>Administrative management<\/strong><\/p>\n\n\n<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Catherine Purenne<\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\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<p class=\"wp-block-paragraph\">We would like to express our deepest gratitude to the <strong>37 patients, family members, and caregivers<\/strong> who collectively participated in a dozen hours of co-design workshops, as well as in the editing and verification of the contents of this tool:<\/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\"><div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Kelvin Arroyo<\/li>\n\n\n\n<li>Christiane Asselin<\/li>\n\n\n\n<li>Sylvie Beaulieu<\/li>\n\n\n\n<li>Sylvain B\u00e9dard<\/li>\n\n\n\n<li>Ren\u00e9 Beno\u00eet<\/li>\n\n\n\n<li>Pierre-Charles Bertrand<\/li>\n\n\n\n<li>Colette B\u00e9rub\u00e9<\/li>\n\n\n\n<li>Janie Boulianne Gref<\/li>\n\n\n\n<li>Pierre Cardinal<\/li>\n\n\n\n<li>Christian Chabot<\/li>\n\n\n\n<li>Denis Cormier-Pich\u00e9<\/li>\n\n\n\n<li>Madeleine C\u00f4t\u00e9<\/li>\n\n\n\n<li>Simon Courtemanche<\/li>\n\n\n\n<li>Clara Dallaire<\/li>\n\n\n\n<li>Annie Descoteaux<\/li>\n\n\n\n<li>Marie-Anne Filion<\/li>\n\n\n\n<li>Rona Fleming<\/li>\n\n\n\n<li>Andr\u00e9 Gaudreau<\/li>\n<\/ul>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>Annie-Danielle Grenier<\/li>\n\n\n\n<li>Debby J-Lessard<\/li>\n\n\n\n<li>Daniel Landry<\/li>\n\n\n\n<li>Micheline Laverdure<\/li>\n\n\n\n<li>Catherine Lemyze<\/li>\n\n\n\n<li>Juliette L\u00e9vesque<\/li>\n\n\n\n<li>Louis Lochhead<\/li>\n\n\n\n<li>Virgil Luca<\/li>\n\n\n\n<li>Sonia Lussier<\/li>\n\n\n\n<li>Vincent Montpetit<\/li>\n\n\n\n<li>Lise Pelletier<\/li>\n\n\n\n<li>Marie-Dominique Poirier<\/li>\n\n\n\n<li>Guy Poulin<\/li>\n\n\n\n<li>Francine Roberge<\/li>\n\n\n\n<li>Ghislaine Rouly<\/li>\n\n\n\n<li>Bernard Saulnier<\/li>\n\n\n\n<li>Lise Viens<\/li>\n\n\n\n<li>Catherine Wilhelmy<\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n<\/div>\n\n                    \n\n\n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">A Glossary<\/h3>\n    \n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">Patient<\/h3>\n    \n\n<p class=\"wp-block-paragraph\">The term patient refers here to any person who has used or may need health and social services, whether currently ill or not. While respectful towards the nuances between terms, in this document the term patient replaces any other similar and commonly used term, such as service user, client, consumer, resident, etc.\n<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>(1) Minist\u00e8re de la Sant\u00e9 et des Services sociaux.(2018). Cadre de r\u00e9f\u00e9rence de l&#8217;approche de partenariat entre les usagers, leurs proches et les acteurs en sant\u00e9 et en services sociaux.<\/em><\/p>\n\n\n<\/div>\n\n                    \n\n\n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">A partnership approach<\/h3>\n    \n\n<p class=\"wp-block-paragraph\">A partnership approach relies on strong relationships between patients, families, caregivers and other actors in the health and social services system. These relationships are nurtured by the complementarity and sharing of each partner\u2019s knowledge, as well as by the ways in which different partners work together. Such relationships fosters a sense of mutual trust and a shared recognition of the importance of each partner\u2019s expertise, including the expertise and experiential knowledge of patients, families, and caregivers. (1)\n<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>(2) IBID<\/em><\/p>\n\n\n<\/div>\n\n                    \n\n\n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">Lived experience <\/h3>\n    \n\n<p class=\"wp-block-paragraph\">Lived experience refers to all the knowledge and skills that patients have or will acquire during their experiences of living with illness, which enable them to act as partners at different levels: in the health care and social services system, in research and in the training of professionals and students. Patients can share their lived experience through:\n<\/p>\n\n\n<div class=\"wp-block-list\">\n<ul class=\"wp-block-list\">\n<li>being partners in their own care;<\/li>\n\n\n\n<li>mobilizing and sharing their experiences as a patient partner;<\/li>\n\n\n\n<li>resource;<\/li>\n\n\n\n<li>being transformational leaders at the systems level (2)<\/li>\n<\/ul>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><em>(3) Direction collaboration et partenariat patient. (2015). Terminologie de la pratique collaborative et du partenariat patient en sant\u00e9 et services sociaux. Universit\u00e9 de Montr\u00e9al.<\/em><\/p>\n\n\n<\/div>\n\n                    \n\n\n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">A learning health system (LHS)<\/h3>\n    \n\n<p class=\"wp-block-paragraph\">A learning health system (LHS) is a dynamic ecosystem of care in which scientific, social, cultural, technological, political, and ethical dimensions are aligned and allow for continuous cycles of learning between practice, data, and knowledge in the system to be integrated into current practice, thereby improving the value of health care.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">More specifically, learning health systems emphasize four functions that are essential to continuous learning in a system: (1) data generation, management, and sharing, (2) the relationship between patients\/families\/caregivers, researchers, clinicians, and decision-makers, (3) engagement, and (4) the development of a culture of continuous learning, which requires coordinated actions by the entire health system. (3)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>(4) Unit\u00e9 de soutien au syst\u00e8me de sant\u00e9 apprenant Qu\u00e9bec.<\/em>\n<em>(2022).<\/em><\/p>\n\n\n<\/div>\n\n                    \n\n\n<div class=\"block-accordion \">\n    <span class=\"block-accordion__label\">Accordion<\/span>\n    <h3 class=\"block-accordion__title\">Value-based healthcare<\/h3>\n    \n\n<p class=\"wp-block-paragraph\">Value-based healthcare is defined as achieving the best possible health outcomes or the best possible care at the lowest cost. (4)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>(5) Menear M., Blanchette, MA., Demers-Payette, O., Roy, D. (2019) A framework for value-creating learning health systems. Health Research Policy and Systems.<\/em><\/p>\n\n\n<\/div>\n\n                    \n\n\n<\/div>\n\n                    \n\n\n\n<div style=\"height:22px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"feuille-de-route\">Roadmap for partnering with patients, families, and caregivers in a Learning Health System<\/h3>\n\n\n\n<p class=\"is-style-none wp-block-paragraph\">The following document is a tool that we invite you to use and share. Available in a clickable PDF format, the <em>Roadmap for Partnering with patients, families, and caregivers in a Learning Health System<\/em> includes interactive fields that allow you to navigate it in an intuitive and fun way.<\/p>\n\n\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\/wp-content\/uploads\/2023\/05\/P269-FINAL-ANG-v4-1.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">Download the interactive roadmap<\/a><\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>The purpose of this tool is to explain the roles of users and their families in a LHS and to describe how these people can, individually and collectively, contribute to its many dimensions.<\/p>\n","protected":false},"author":2,"featured_media":14772,"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":"10895,12872,16209,15212,14546,16203","footnotes":""},"categories":[40],"tags":[113],"article-type":[47,48],"class_list":["post-16667","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-partnership","article-type-deliverables","article-type-tools"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Roadmap for partnering with patients, families, and caregivers in a Learning Health System | Unit\u00e9 soutien SSA Qu\u00e9bec<\/title>\n<meta name=\"description\" content=\"How can we co-construct a learning health system with users and their families? 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