Le forum s’est concentré sur le renforcement des capacités en matière d’engagement des patients pour les chercheurs, les patient, famille et donneur partenaires et les stagiaires par le biais d’un mélange de présentations, d’ateliers et de discussions sur la définition des priorités.

Les résultats de l’apprentissage ont permis de :
  • Renforcer les compétences et les ressources afin d’améliorer la capacité de la communauté de recherche sur le don et la transplantation à faire participer les patients à l’élaboration des projets et à l’exécution de la recherche ;

  • Développer et partager des approches pratiques pour améliorer l’équité, la diversité et l’inclusion dans l’engagement des patients et la formation à la recherche au sein du réseau canadien de don et de transplantation ;

  • Comprendre les meilleures pratiques émergentes pour intégrer les PFD dans la mobilisation des connaissances et partager les connaissances acquises avec l’ensemble de la communauté des chercheurs.

Consultez les enregistrements

Le forum s’est concentré sur le renforcement des capacités en matière d’engagement des patients pour les chercheurs, les patient, famille et donneur partenaires et les stagiaires par le biais d’un mélange de présentations, d’ateliers et de discussions sur la définition des priorités.

Les résultats de l’apprentissage ont permis de :
  • Renforcer les compétences et les ressources afin d’améliorer la capacité de la communauté de recherche sur le don et la transplantation à faire participer les patients à l’élaboration des projets et à l’exécution de la recherche ;

  • Développer et partager des approches pratiques pour améliorer l’équité, la diversité et l’inclusion dans l’engagement des patients et la formation à la recherche au sein du réseau canadien de don et de transplantation ;

  • Comprendre les meilleures pratiques émergentes pour intégrer les PFD dans la mobilisation des connaissances et partager les connaissances acquises avec l’ensemble de la communauté des chercheurs.

Consultez les enregistrements
Nous tenons à remercier AstraZeneca pour leur soutien à cet événement.

Le riche programme de cette année a été développé par un comité de planification diversifié incluant :
Les coprésidents :
Le comité de planification :

JEUDI 8 JUIN 2023

Bloc 1 – Intégrer les patients, familles et donneurs dans l’élaboration des questions de recherche et du financement

Mot de bienvenue des coprésidents du forum.

Undertaking research with First Nations, Metis and Inuit peoples: what researchers need to know about research governance and Indigenous patient engagement | 20-minutes presentation & 10-minute Q&A
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Moderator:
Description

This presentation will focus on providing guidance to researchers on ethical research practices and respectful engagement with First Nations, Metis, and Inuit (FNMI) peoples in Canada. It will outline the unique histories and cultures of FNMI peoples and how they relate to research practices along with the importance of research governance and Indigenous patient engagement, with examples and case studies used to highlight successful engagement strategies. Ultimately, this presentation will provide valuable knowledge and tools for researchers to undertake ethical and respectful research with FNMI communities.

Patient & Public Partners in Research Prioritisation: Experiences of the BTRU in ODT | 20-minute presentation + 10-minute Q&A
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Moderator:
Description

The presentation will focus on the involvement of patients and the public in research prioritization for organ donation and transplantation. The presenter will the importance of engaging with patients and the public to ensure that research projects are aligned with their needs and values. Case studies and real-life examples are shared to demonstrate the effectiveness of this approach. Ultimately, the presentation provides insights and tools for researchers to engage with patients and the public in a meaningful and effective way, producing more relevant and impactful research outcomes.

12:15 – 12:25 | PAUSE
Navigating Research NET | 20-minute presentation
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Moderator:
Description:

This presentation will introduce you to the core elements required to meaningfully integrate Patient, Family, and Donor partners into your grant applications. The goal is to prepare researchers and PFD partners with an understanding of how to navigate ResearchNet, attain your CIHR Pin, complete the Equity and Diversity questionnaire, and register & complete the Canadian Commons CV. By the end of this workshop, researchers will understand the steps required to add PFD partners as grant applicants and PFD partners will have the tools to complete their profiles.

Best practices in involving patient partners in grant applications | 20-minute presentation
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Moderator:
Description:

The presentation will cover topics such as the importance of involving patient partners in the grant application process, how to identify and recruit patient partners, strategies for collaborating with patient partners, and best practices for ensuring that patient partners’ perspectives and needs are adequately incorporated into the grant application. Additionally, the presentation may discuss the evaluation of outcomes of involving patient partners in the grant application process. The presentation is expected to be informative for researchers and organizations seeking to involve patient partners into their research efforts, particularly during the grant application stage.

Q&A on integrating patients, families, and donors during funding development | 10 minutes
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13:15 – 14:00 | PAUSE REPAS
Bloc 2 – Intégrer l’engagement des patients, des familles et des donneurs dans l’exécution de la recherche
Best practices when communicating research opportunities and integrating patient, family and donor partners to a project | 15-minute presentation
Speaker:
Moderator:
Description

The presentation will focus on the best practices for discussing research opportunities with patient, family, and donor partners and integrating them into the project. It will cover topics such as the importance of involving these partners in research, how to identify and recruit appropriate partners, strategies for effective communication and collaboration with partners, and how to ensure that diverse perspectives are represented in the project. Additionally, the presentation will touch upon the evaluation of partnerships in research and the benefits and challenges of involving patient, family, and donor partners in the project. This presentation is expected to be informative for researchers and organizations seeking to establish effective partnerships with patient, family, and donor partners in the field of research.

Get in touch with Sofia by email: Sofia.Ahmed@ahs.ca or on Twitter (@SofiaAhmedMD)!

Inclusive Method for Developing Patient-Oriented Research Tools | 15-minute presentation
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Moderator:
Description:

The presentation will explore a novel approach to developing patient-oriented research tools that prioritize the needs and perspectives of patients. This inclusive method involves collaborating with patients and other stakeholders to identify research questions and meaningful outcome measures, and involving them in the design and testing of research tools. By prioritizing patient perspective in clinical research, this method aims to develop tools that are more relevant, accessible, and meaningful to patients, ultimately leading to better health outcomes. Attendees of this presentation can expect to gain insights into the process of developing patient-oriented research tools and the potential benefits of adopting an inclusive approach to clinical research.

Learn more here.

Get in touch with Selina by email: soallu@ucalgary.ca or on Twitter (@SelinaAllu)!

Integrating Patient, Family and Donor Partners in Clinical Trials | 15-minute presentation
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Description:

The presentation will delve into the importance of incorporating patients, family members and donors in the clinical trial process. During the presentation, attendees can expect to learn about the benefits and challenges of including these individuals on clinical trial teams, as well as strategies for effectively engaging and incorporating them onto the team. Practical tools will be provided to help clinical trial teams that wish to engage people with lived experience on their teams.

Get in touch with Dawn by email:  or on Twitter (@TO_dpr)!

Panel discussion on integrating patient, family, and donor engagement in research execution
Speakers:
Moderator:

VENDREDI 9 JUIN 2023

Bloc 3 – Les patients, les familles et les donneurs dans la mobilisation des connaissances

Mot de bienvenue des coprésidents du forum.

 Engaging Patient, Family and Donor Partners in Arts-Based Research | 15-minutes presentation & 5-minute Q&A

Speaker:
Moderator:
Description:

The presentation aims to showcase the benefits of inclusive research methods that involve patients, families, and donors as active partners. The presentation will explore the ways in which arts-based research can be utilized to engage these partners in a meaningful way, and discuss the importance of including their perspectives and experiences in the research process. Attendees can expect to gain a deeper understanding of the benefits of engaging diverse stakeholders in research, and learn practical tips on how to incorporate arts-based approaches into their own research projects. Whether you are a researcher, healthcare professional, or simply interested in learning about innovative research methods, this presentation promises to be an engaging and informative discussion.

Get in touch with Fraser by email: fraserallanbest@gmail.com or on Twitter (@FraserAllanBest)!

Developing a modernized organ donation and transplantation data and reporting system:​ A lens on patient, family, donor engagement | 15-minute presentation & 5-minute Q&A
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Moderator:
Description:

Learn more about how CIHI and Infoway are developing a modernized ODT data and reporting system in Canada. This presentation will provide a project overview, including key milestones achieved to date across its five work streams. This presentation includes a lens on the project’s patient, family, donor engagement and our approach to partnering with 4 PFD members to plan virtual focus groups to seek input on CIHI’s ODT public reporting.

Get in touch with Ryanna and Rachel: odt@cihi.ca.

11:50 – 12:00 | PAUSE
Bloc 4 – Définition des priorités de recherche pour les patients, les familles et les donneurs
Patient, Family and Donor Research and Policy Priorities: Using Machine Learning to Enhance Equity and Access in Organ Donation and Transplantation Health Systems: Patient Perspectives | 1.5 hour Workshop
Session Objectives:
  • Engage with patient and family donor partners to discuss patient perspectives on ML deployment in a clinical setting.
  • Advance collaboration between investigators, patients and family donor partners in donation and transplantation research.
  • Inform the development of research questions for a large grant applicatiobased on participant perspectives.
  • Identify patient and family donors willing to contribute to a grant application and subsequent project.

13:30 – 14:15 | PAUSE REPAS
Patient, Family and Donor Research and Policy Priorities: A National Approach to Prioritizing Emerging Issues in COVID-19 in Transplantation | 1.5 hour Workshop
Description:

Transplant recipients remain at higher risk of severe COVID-19 outcomes. For transplant recipients surviving COVID-19 and/or experiencing the extreme stress associated with the pandemic, little is known about effective strategies to support recovery of quality of life. Studying these questions in Canada is challenging, given the pace of variant evolution and drug development, as well as regional variations in therapeutic practices and public health policies. How quickly the pandemic changes has made it difficult to deliver research results in time to still be relevant for clinical and policy decision making.

To address this challenge, CDTRP has established a national, multi-disciplinary team and an agile, collaborative framework to address emerging research questions. With 12 participating Canadian transplant programs, we are creating a prospective registry of over 2500 transplant patients and their caregivers. A national data platform will capture outcomes from medical chart reviews, Patient-Reported Outcome Measures, and economic questionnaires to enable our research team to answer emerging questions on (1) therapeutic effectiveness and safety; (2) mental health, long-term well-being, and family impact; and (3) therapeutic cost-effectiveness and economic burden on the health care system and on families.

This workshop is open to everyone in the national transplant community, including patients and family, health professionals, partner organizations, industry, and researchers from all disciplines. Together, we will develop consensus on the most pressing knowledge gaps related to therapeutics, mental health and well-being, and the economics of COVID-19 in transplant patients and families and plan the studies to address them.

Session Objectives:

  • Identify the priority questions that the community would like to be answered through the TREAT-COVID research project
  • Gain every participant’s perspective, including adult and pediatric transplant recipients, their families, caregivers and researchers
  • Share progress on developing the project that we’ve made over the last year
  • Align the research goals of TREAT-COVID with the priorities of the community