{"id":2627,"date":"2024-01-26T13:15:15","date_gmt":"2024-01-26T21:15:15","guid":{"rendered":"https:\/\/pxphub.org\/?page_id=2627"},"modified":"2025-10-27T14:41:28","modified_gmt":"2025-10-27T21:41:28","slug":"steering-committee-2023","status":"publish","type":"page","link":"https:\/\/pxphub.org\/fr\/event\/past-events\/steering-committee-2023\/","title":{"rendered":"Steering Committee 2023"},"content":{"rendered":"

\u00c9V\u00c9NEMENTS<\/h1>\r\n

Steering Committee 2023<\/h2>\r\n

Nous remercions chaleureusement les membres du comit\u00e9 directeur de PxP 2023 pour leurs pr\u00e9cieux conseils et leur expertise. Le comit\u00e9 est enti\u00e8rement form\u00e9 de patients partenaires. PxP 2023 est pris en charge par l\u2019IALA des IRSC<\/a>.<\/p>\r\n

\"This<\/p>\r\n

Joletta Belton<\/h2>\r\n

Hey there, thanks for reading my bio. I’m Jo<\/strong>, a reader, writer, dog mom, and nature lover. I’m also a fierce advocate for the equitable inclusion of lived expertise in the work of pain. I got hurt many a moon ago working as a firefighter paramedic. It wasn’t much of anything at the time, then became life-altering and world upending. I was forced to medically retire from the career that had defined me and started down a path of trying to better understand pain and what to do about it. I’m still on that path. MyCuppaJo.substack.com<\/a>\u00a0is where I make sense of pain through science, stories, philosophy, and art through the lens of my own lived experiences of pain and trauma and struggling to find the right care. I’m also a partner in pain research, an author on peer-reviewed papers and textbook chapters, founding co-chair of IASP’s Global Alliance of Partners for Pain Advocacy, and the first Patient & Public Partnerships editor at the Journal of Orthopaedic & Sports Physical Therapy.<\/p>\r\n

En savoir plus<\/h5>\r\n

Ressources recommand\u00e9es:<\/strong><\/p>\r\n

    \r\n
  1. Patients as Partners in Research: It’s the Right Thing to Do<\/a><\/li>\r\n
  2. Patients as Partners in Research: There Is Plenty of Help for Researchers<\/a><\/li>\r\n
  3. Patient Compensation Tools<\/a><\/li>\r\n<\/ol>\r\n

    \"This<\/p>\r\n

    Savia de Souza<\/h2>\r\n

    Atteinte de polyarthrite rhumato\u00efde depuis plus de 10 ans, Savia de Souza<\/strong> a d\u00fb mettre un terme \u00e0 sa carri\u00e8re de dentiste de fa\u00e7on anticip\u00e9e. Depuis 2013, elle participe activement, en tant que patiente, \u00e0 diff\u00e9rents projets en rhumatologie au Royaume-Uni et ailleurs et a men\u00e9, publi\u00e9 et pr\u00e9sent\u00e9 ses propres \u00e9tudes. Elle tient \u00e0 mettre en lumi\u00e8re les enjeux qui m\u00e9riteraient plus d\u2019attention de la part du corps m\u00e9dical selon les patients, et \u00e0 accro\u00eetre la participation de ces derniers \u00e0 la recherche ainsi qu\u2019\u00e0 la conception et \u00e0 la prestation des services de sant\u00e9.<\/p>\r\n

    En savoir plus<\/h5>\r\n

    Ressources recommand\u00e9es:\u00a0<\/strong><\/p>\r\n

      \r\n
    1. \r\n
        \r\n
      1. R\u00e9mun\u00e9ration des patients partenaires dans le contexte de la recherche et des soins de sant\u00e9 : perspective des patients sur les motifs et la marche \u00e0 suivre<\/a><\/li>\r\n
      2. Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study<\/a><\/li>\r\n
      3. Patient and public involvement in an international rheumatology translational research project: an evaluation<\/a><\/li>\r\n<\/ol>\r\n<\/li>\r\n<\/ol>\r\n

        \"This<\/p>\r\n

        Eileen Davidson<\/h2>\r\n

        Eileen Davidson<\/strong> is a rheumatoid arthritis patient advocate, writer and speaker from Vancouver, BC. She is a regular writer for Creaky Joints, an ambassador with The Arthritis Society and patient advisory board member (APAB) with Arthritis Research Canada among many more. Healthline, Everyday Health and Health Central have called her blog and social media channels one of the best in the arthritis community to follow. For a professional or panel event, Eileen Davidson’s extensive knowledge and experience in the arthritis community make her an excellent resource and advocate. As a speaker, she brings a unique perspective and personal story that can inspire, educate and engage. As a writer, she is a skilled communicator and can provide valuable insights and information on the topic of arthritis advocacy.<\/p>\r\n

        En savoir plus<\/h5>\r\n

        Ressources recommand\u00e9es:\u00a0<\/strong><\/p>\r\n

          \r\n
        1. \r\n
            \r\n
          1. Course: A How-to Guide for Patient Engagement in Research<\/a><\/li>\r\n
          2. Patient Engagement in Research Scale<\/a><\/li>\r\n
          3. The Pathway of Patient Engagement in Rheumatology Research<\/a><\/li>\r\n<\/ol>\r\n<\/li>\r\n<\/ol>\r\n

            \"This<\/p>\r\n

            Trudy Flynn<\/h2>\r\n

            Trudy Flynn<\/strong> is a medically retired Nurse from Nova Scotia. She was diagnosed with Fibromyalgia over 31 years ago. She controls her Fibromyalgia with exercise, is a long distance runner and follows the slow but steady mantra. Trudy started being involved in research as part of a Clinical Trial in 2009 through the Nova Scotia Pain Clinic, which led to her first experience with actual Patient Engagement in 2014 as part of the steering committee for the CIHR – James Lind Alliance Adult Fibromyalgia Priority Setting Partnership. Trudy was a Patient Representative at the Canadian Pain Summit in Toronto in September, 2014 and it was at this Summit, listening to Researchers that Trudy realized how important Knowledge Translation and Patient Engagement were to making research relevant to the community the research is supposed to serve. As a result of this realization Trudy became a Research Ambassador for CIHR – IMHA and later a Patient Engagement Research Ambassador (PERA).<\/p>\r\n

            En savoir plus<\/h5>\r\n

            In 2017, Trudy coauthored a paper published in the Canadian Journal of Pain, called “A paradigm change to inform Fibromyalgia research priorities by engaging patients and health care professions”. In 2018 Trudy wrote about her James Lind experience in an article titled “The James Lind Alliance: Identifying the Top 10 Canadian Research Priorities for Fibromyalgia – a Patients Perspective” for the CIHR website. In 2019 Trudy was a key contributor for the Fibromyalgia Section of the IMHA Online Resource Library.<\/p>\r\n

            Cette m\u00eame ann\u00e9e, Trudy Flynn a d\u00e9cid\u00e9 de soutenir et de promouvoir l\u2019engagement des patients au sein des provinces maritimes en rejoignant l\u2019Unit\u00e9 de soutien de la SRAP des Maritimes (USSM), o\u00f9 elle copr\u00e9side actuellement le comit\u00e9 des patients partenaires de l\u2019USSM et fait partie de nombreux autres comit\u00e9s.<\/p>\r\n

            En 2021, Trudy Flynn a particip\u00e9 \u00e0 la fondation de l\u2019Association de la Fibromyalgie du Canada (AFC), organisme national con\u00e7u pour et par des personnes atteintes de la maladie, et est actuellement la pr\u00e9sidente de son conseil d\u2019administration.<\/p>\r\n

            \r\n

            Ressources recommand\u00e9es:\u00a0<\/strong><\/p>\r\n

              \r\n
            1. Health Research BC<\/a><\/li>\r\n
            2. Patient Advisors Network<\/a><\/li>\r\n
            3. Alberta SPOR SUPPORT Unit (AbSPORU)<\/a><\/li>\r\n<\/ol>\r\n

              \"A<\/p>\r\n

              Alex Haagaard<\/h2>\r\n

              Alex Haagaard<\/strong> is a design researcher who specializes in disability-inclusive UX and digital service design. They earned their Master of Design from OCAD University in Toronto, studying knowledge gathering practices of emergency medical professionals for the purposes of healthcare information design. During this time, they also increasingly struggled with what one doctor derisively described as “a myriad of nonspecific symptoms,” which made publishing and networking as an early career researcher challenging. In 2016, they began to work full-time pursuing a diagnosis and medical care, an experience which they describe as the “world’s worst paying, least prestigious design research fellowship.” After two years of fighting to access care, they realized that if they wanted effective treatment, they would have to make it themselves. Researching the neurophysiology of histamine and identifying novel plant-based compounds, they successfully produced their own sleep cycle in 2018.<\/p>\r\n

              En savoir plus<\/h5>\r\n

              Since then, they have been working with companies to develop and advocate for accessible design processes, including neglected modes of accessibility experienced by people with chronic pain and illness. They also work as a patient advocate and currently co-chair the Chronic Pain Network’s Knowledge Mobilization and Implementation Science committee.<\/p>\r\n

              \r\n

              Ressources recommand\u00e9es:\u00a0<\/strong><\/p>\r\n

                \r\n
              1. Being-in-the-Room Privilege: Elite Capture and Epistemic Deference<\/a><\/li>\r\n
              2. \r\n

                The disappearance of the sick-man from medical cosmology, 1770-1870<\/a><\/p>\r\n<\/li>\r\n

              3. The sick-person rejects their disappearance<\/a><\/li>\r\n<\/ol>\r\n

                \"This<\/p>\r\n

                Linda Hunter<\/h2>\r\n

                Linda Hunter<\/strong> is a retired executive health care leader and nurse who has worked locally, nationally, and internationally in healthcare over the last 35 years. Linda has worked with seniors in three long term care homes in Ontario – including two rural homes. She has spinal stenosis, osteoarthritis, fibromyalgia, and severe degenerative disc disease and has lived with chronic pain for over 15 years. \u00a0Linda is a CIHR Patient Engagement Research Ambassador (PERA) for the Institute of Musculoskeletal Health and Arthritis with the Canadian Health Research Institutes (CIHR) and is a member of the Institute’s Advisory Board. She co-developed online educational modules for patients and researchers about Patient Engagement in Research – available through CIHR-IMHA. Linda also is a Board member of the Canadian Arthritis Patient Alliance (CAPA) and is a member of the Fibromyalgia Association of Canada’s Research and Education Committees.<\/p>\r\n

                En savoir plus<\/h5>\r\n

                Linda is an Essential Caregiver to her Mum, who lives with dementia, and is an executive member of the Friends and Family Council at her Mum’s LTC Home.<\/p>\r\n

                Linda states: “It is vital that the patient voice is respected, listened to, and incorporated into change in the delivery of health care services, including research. Patients are experts about their disease and the lived experience. They are becoming more informed and knowledgeable, and it is imperative that they are included in the development of plans of what is researched.” Linda is a Patient Co-Investigator for the Clinical Trails Training Platform research grant funded by CIHR called CanTrain and is the national Co-Chair of the Patient, Family and Community Member Working Group.<\/p>\r\n

                \r\n

                Ressources recommand\u00e9es:\u00a0<\/strong><\/p>\r\n

                Course: A How-to Guide for Patient Engagement in Research<\/a><\/p>\r\n

                \"This<\/p>\r\n

                Amy Price<\/h2>\r\n

                Amy Price, d\u00e9tentrice d\u2019un doctorat<\/strong>, \u00e9tait consultante en r\u00e9adaptation neurocognitive et en missions internationales avant de subir une grave blessure n\u00e9cessitant des ann\u00e9es de r\u00e9adaptation. Apr\u00e8s cette \u00e9preuve, elle s\u2019est donn\u00e9 l\u2019objectif de faire le pont entre la m\u00e9thodologie, la recherche en sant\u00e9 et la participation du public, o\u00f9 les personnes sont \u00e9duqu\u00e9es et ont les moyens d\u2019\u00eatre des partenaires \u00e9gales. Son exp\u00e9rience lui a montr\u00e9 que le partage des connaissances, la collaboration interprofessionnelle et la recherche factuelle fa\u00e7onneront l\u2019avenir. Elle est r\u00e9dactrice de la rubrique des partenariats avec les patients et le public pour la section Recherche du journal BMJ et chercheuse principale \u00e0 l\u2019\u00c9cole de m\u00e9decine de l\u2019Universit\u00e9 Stanford.<\/p>\r\n

                En savoir plus<\/h5>\r\n

                Ressources recommand\u00e9es:\u00a0<\/strong><\/p>\r\n

                Medical Education and Research Involvement with Patient and Public Partners<\/a><\/p>\r\n

                \"This<\/p>\r\n

                Sara Riggare<\/h2>\r\n

                Sara Riggare<\/strong> (M.Sc, Ph.D) est patiente leader et patiente chercheuse \u00e0 l\u2019Universit\u00e9 d\u2019Uppsala en Su\u00e8de. Son but est de rapprocher les patients, les chercheurs, les professionnels de la sant\u00e9 et du secteur priv\u00e9 et les d\u00e9cideurs politiques afin d\u2019am\u00e9liorer la sant\u00e9 pour tous et toutes. Atteinte de la maladie de Parkinson depuis 35 ans, ses travaux portent sur la science personnelle, la quantification de soi et la recherche dirig\u00e9e par les patients. Elle se base sur sa propre exp\u00e9rience de la maladie pour cr\u00e9er des mod\u00e8les de soins auto-administr\u00e9s destin\u00e9s aux personnes atteintes de maladie chronique.<\/p>\r\n

                En savoir plus<\/h5>\r\n

                Ressources recommand\u00e9es:\u00a0<\/strong><\/p>\r\n

                  \r\n
                1. My 5 top learnings from tracking my Parkinson for over a decade<\/a><\/li>\r\n
                2. Collection of links to the work of Marina Noordegraaf<\/a><\/li>\r\n
                3. The Promise of Patient-Led Research Integration into Clinical Registries and Research<\/a><\/li>\r\n
                4. Patient-Led Research Scorecards<\/a><\/li>\r\n
                5. A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research<\/a><\/li>\r\n<\/ol>\r\n

                  \"This<\/p>\r\n

                  Janice Tufte<\/h2>\r\n

                  Janice Tufte<\/strong> vit \u00e0 Seattle, dans l\u2019\u00c9tat de Washington, et est une patiente partenaire active dans la recherche sur les syst\u00e8mes de sant\u00e9 et les efforts d\u2019am\u00e9lioration de leur qualit\u00e9 partout dans le monde. Elle a publi\u00e9 des guides de ressources d\u2019urgence locaux pour les musulmans il y a 20 ans, et diffuse \u00e0 pr\u00e9sent les derni\u00e8res ressources et connaissances sur les facteurs sociaux de la sant\u00e9 et leurs effets potentiels sur les soins complexes, tout en luttant contre les disparit\u00e9s dans l\u2019approche de soins globale. Janice Tufte fait partie de plusieurs groupes d\u2019experts techniques, comit\u00e9s et groupes de travail communiquant sur l\u2019importance de l\u2019inclusion \u00e9quitable et collaborative dans la conception, la r\u00e9alisation, la mise en \u0153uvre et la diffusion d\u2019\u00e9tudes. Pour en savoir plus :\u00a0www.janicetufte.com<\/a><\/p>\r\n

                  En savoir plus<\/h5>\r\n

                  Ressources recommand\u00e9es:\u00a0<\/strong><\/p>\r\n

                    \r\n
                  1. Patient Engagement Tool Kit<\/a><\/li>\r\n
                  2. Culturally responsive health research: A collaborative design model for equitable and sustainable community impact<\/a><\/li>\r\n
                  3. Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation<\/a><\/li>\r\n<\/ol>\r\n

                    \"This<\/p>\r\n

                    Dawn Richards<\/h2>\r\n

                    Consultant, IALA Engagement des patients dans la strat\u00e9gie de recherche<\/p>\r\n

                    Dawn Richards, PhD, lives with rheumatoid arthritis and osteoarthritis. At Five02 Labs Inc., her work combines her analytical chemistry training and her passion to ensure patients inform research and healthcare. She helps people and organizations design and execute their patient engagement initiatives using leading practices and tailoring their approaches to meet their goals and patient partners’ needs. She has contributed to the literature and practice in patient engagement on compensation, authorship, recognizing patients as people with skills and who lead fulfilling lives, and training on patient engagement in research. As a volunteer, Dawn is Vice President of the Canadian Arthritis Patient Alliance, has been invited to and is involved in a number of People Living with Arthritis\/Rheumatism in Europe (PARE, of the European Alliance of Associations for Rheumatology) activities, and was the first Patient Advisor of the Canadian Medical Association’s Wait Time Alliance.<\/p>\r\n

                    En savoir plus<\/h5>\r\n

                    Ressources recommand\u00e9es:\u00a0<\/strong><\/p>\r\n

                      \r\n
                    1. Course: A How-to Guide for Patient Engagement in Research<\/a><\/li>\r\n
                    2. R\u00e9mun\u00e9ration des patients partenaires dans le contexte de la recherche et des soins de sant\u00e9 : perspective des patients sur les motifs et la marche \u00e0 suivre<\/a><\/li>\r\n
                    3. Reflections on patient engagement by patient partners: how it can go wrong<\/a><\/li>\r\n
                    4. Rosamund Snow: What makes a real patient?<\/a><\/li>\r\n<\/ol>\r\n

                      Nouvelles et mises \u00e0 jour<\/h2>\r\n

                      Pour recevoir des nouvelles et mises \u00e0 jour concernant la conf\u00e9rence PxP.<\/p>\r\n

                      S\u2019abonner <\/a><\/p>","protected":false},"excerpt":{"rendered":"

                      EVENT Steering Committee 2023 We are hugely grateful to the 2023 PxP Steering Committee for their significant guidance and expertise. 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