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Outcomes of organs transplanted after Medical Assistance in Dying in the province of Québec

Since the initial development of the program in 2017, donation after Medical Assistance in Dying (MAID) has grown substantially in Québec. Today almost 15% of all donors in Québec come from this pathway and 182 organs were transplanted from 64 donors between 2018 and 2022. However, while transplant programs informally report that recipients of these organs have had favorable outcomes, very little scientific data has been published on the topic. Our project aims to evaluate how the patients who received these kidneys, livers, and lungs are doing after the transplant using standardized outcome definitions. We will compare to patients who received organs from traditional donation pathways such as after brain death or living donation. This will provide important knowledge that can be used to: encourage programs to develop or improve their donation after MAID programs; give patients who are considering donation after MAID more information about the impact their gift could make; serve as a pilot project for a Canada wide program that would evaluate similar questions.

Apply by 2023-04-03

Virtual
This opportunity is now closed

Canadian Society of Transplantation - Abstract Reviewer for Annual Conference

The Canadian Society of Transplantation (CST) hosts an annual conference, which will take place in Oct 2023. Researchers and clinicians submit summaries of their research (scientific abstracts and lay/plain language summaries) which are reviewed by their peers from the scientific committee, and also by patient-family-donor partners to determine their suitability for teh conference. Top rated abstracts are also selected for awards, with 2 awards for the best lay/plain language summaries, selected by PFD partners.

Apply by 2023-05-15

Virtual
This opportunity is now closed

Experiencing graft failure and exploring re-transplantation: a patient perspective

Kidney transplantation can significantly improve the lives of patients with kidney disease. But the life span of a transplanted kidney is limited, and many patients experience graft failure. Patients with graft failure do extremely poorly. They experience a life-altering event for which they are often poorly prepared and poorly supported. Many are not re-transplant candidates and some die after experiencing graft failure. It is known that patients with graft failure experience fragmented transitions of care between the transplant and dialysis teams. Patient perspectives are poorly researched and poorly understood, thus poorly translated into clinical practice. This research project aims to obtain the perspectives of patients and their caregivers who are in different stages of graft failure. We want to describe the unique experiences and needs of patients as they transition to dialysis, re-transplantation or palliative care. We also want to identify factors that can improve the care, outcomes, and well-being of these patients and what patients think impedes their access to re-transplantation. We will use well-established qualitative methods that are largely unexplored in the field of kidney transplantation. Our team includes nationally recognized transplant clinicians, researchers, and leaders.

Apply by 2023-05-23

Virtual
This opportunity is now closed

Curating Critical Futurities in Transplant Medicine: Arts Practices as New Knowledge

“Curating Critical Futurities in Transplant Medicine: Arts Practices as New Knowledge” asks us to consider how the arts can be part of creating new knowledge and materializing new futures for people impacted by transplant medicine. Transplant medicine is a field marked by frictions: entanglements of self with other, graft with host; biomarkers, biopsies, devices, pills and surgeries blur inside with outside. A curative hope can be elusive as health is marked by the chronicity of other illness. In this event, our research team (consisting of academics, artists, students, and people with lived experience of transplantation) is proposing to create an exhibition of artistic projects and makings from a large multi-year arts-based study of psychosocial challenges and resiliencies across different solid organ transplantation programs. The project is embedded in a critical disability (and disability arts) framework, and we are hoping to engage people working in the biomedical side of transplantation with ways of knowing transplant differently, through the arts.

Apply by 2023-07-17

In person
This opportunity is now closed

Working with deceased donors' family members to improve the donation process experience

There are more people who need a life-saving organ than there are donated organs. To increase the quality and number of organs available for transplant from deceased organ donors, physicians use ‘donor interventions.’ Donor interventions involve things like administering drugs to donors to improve the condition of their organs for the benefit of organ recipients. However, there is limited evidence that these interventions are safe and effective; some may even do more harm than good. To improve donation practices, large trials of donor interventions are needed, but conducting these trials in deceased donation is challenging. Our long-term goal is to produce guidance on the conduct of randomized trials of donor interventions. As a first step in our program of research, this project addresses important preliminary research questions to ground guideline development. As part of this project, we aim to partner with deceased donors’ family members to identify key markers of a high-quality donation process, enabling us to later derive outcome measures aimed at improving donation processes for families. As a critical step on the path to transformative research, this project will benefit donors who want to maximize their legacy, families who want to see successful donation, and recipients who will benefit from improved organs.

Apply by 2023-11-30

In person
This opportunity is now closed

Patient perceptions on shared decision-making about deceased donor kidneys

Transplantation is a life-saving therapy for patients with kidney disease, but patients continue to deteriorate on the waitlist. Meanwhile, sometimes physicians decline deceased donor kidney offers on behalf of their patients without a discussion with them. The purpose of this study is to learn about how people feel about decision-making about deceased donor kidneys. We also want to learn what people know about how kidneys are allocated and how they feel about less than ideal kidneys. Finally, we’d like to learn about how people prefer to be educated about this topic. This study is being conducted by researchers from the University of Saskatchewan and University of Montreal. --- La transplantation est un traitement vital pour les personnes atteintes d’une maladie rénale. Cependant, certain(e)s patient(e)s décèdent en attente de cette intervention. Il arrive que des médecins refusent les offres de reins de donneur(euse)s décédé(e)s au nom de leurs patient(e)s sans en discuter avec eux car ils jugent les reins non optimaux. L’objectif de cette étude est de recueillir l’opinion des patient(e)s et des proches aidant(e)s à propos de la prise de décision relative aux reins de donneur(euse)s décédé(e)s. Nous souhaitons également découvrir ce que les gens savent de l’attribution des reins et ce qu’ils pensent des reins dont l’état n’est pas optimal. Enfin, nous cherchons à savoir comment les gens préfèrent être renseignés à ce sujet. Vous êtes admissible à participer à cette étude si vous êtes une personne ayant subi une transplantation rénale, un(e) candidat(e) à une transplantation ou un proche aidant(e). En participant à l’étude, vous devrez répondre à un questionnaire en ligne.

Apply by 2024-02-29

Virtual
This opportunity is now closed

Identifying And Addressing the Educational Needs of Patients from Marginalized Groups On Less Than Ideal Kidneys

Kidney transplantation is the best treatment for patients with end-stage kidney failure. There is, however, a gap between the number of patients waiting for a transplant and the number of organs available, leading to the death of patients. Meanwhile, there are numerous deceased donor kidneys which are not used and discarded. In the US, it is estimated that around 1 out of 5 deceased donor kidneys are discarded. Most of the discarded kidneys are less than ideal since the deceased donor had medical conditions such as high blood pressure or diabetes. However, using these less-than-ideal kidneys for selected patients could be a novel strategy to increase access to kidney transplantation. We have shown in previous studies that patients support the use of less than ideal kidneys and that shared-decision making is important for patients and transplant professionals in the decision to accept or decline a deceased donor offer. Shared-decision making is a process where both the healthcare providers and patients participate in the decision making. However, patients require educational tools to provide clear information to engage in this decision-making process. Discussion and education about less-than-ideal kidneys that lack cultural sensitivity could contribute to mistrust in the allocation process. Therefore, it is of paramount importance to give patients from marginalized populations the opportunity to identify methods for developing educational resources tailored to their needs and realities. Purpose of the study: In this study, we aim to capture patients’ and caregivers’ perspectives from marginalized populations by race and ethnicity on less-than-ideal kidneys and their education needs. Methods: Literature review on the existing educational tools developed for patients from marginalized populations. Individual interviews and focus groups with kidney transplant candidates and caregivers from different ethnic groups (Black, Asian, South-Asian and Indigenous) about their perspectives on less-than-ideal kidneys and their education needs. The content of the interviews will be analyzed, and the results will be used to develop educational tools that will be translated into different languages. Participants will be invited to review the developed educational tools. Anticipated outcomes: This research project will provide a new educational tool that will help patients participate in the decision-making process to accept or not a less-than-ideal deceased donor kidney.

Apply by 2024-06-28

Virtual
This opportunity is now closed

Rural-to-Urban Relocation for Organ Transplants in British Columbia: Patient Experience and Cost

Rural patients in need of solid organ transplants face financial difficulties due to the expenses associated with accommodation, transportation and food costs when relocating to Vancouver for their transplant. Often, patients must relocate at a moment’s notice due to the nature of organ transplant operations. In a city with one of the highest costs of living in Canada and a vacancy rate of 0.9%1, patients and their families face considerable challenges finding housing and experience stress with the associated costs. The purpose of this study is to develop an understanding of the out-of-pocket costs of rural solid organ transplant patients from British Columbia and their caregivers coming to Vancouver for transplant care to support advocacy efforts. The study has two parts. We are doing interviews with rural transplant recipients who have received a solid organ transplant within the last 5 years or are on the waitlist for a transplant and those who have provided care to transplant patients. We are also conducting an online survey to learn more about the out-of-pocket costs of patients and their caregivers. The data collected will be used to advocate for policy change in the next provincial election cycle to ensure rural solid organ transplant patients do not face barriers to accessing life-saving treatment due to financial obstacles. Visit our study website: https://crhr.med.ubc.ca/current-projects/rural-to-urban-relocation-for-lung-transplant/ Complete survey here: https://ubc.ca1.qualtrics.com/jfe/form/SV_3lbFievmDNTdTsq

Apply by 2024-08-30

Virtual
This opportunity is now closed

Abstarct reviewer for Canadian Society of Transplantation Annual Scientific meeting

The Canadian Society of Transplantation Annual Scientific Meeting attracts researchers from across the country to present their newest research findings to the transplant community. The researchers write a scientific abstract and a plan language (lay abstract). We are looking for PFD partners to review the lay abstracts and provide a rating. The reviewers will also identify abstracts that should be considered for a lay abstract award, which will be presented at the conference to the top 3 lay abstracts.

Apply by 2024-07-04

Virtual