Série de webinaires « Level Up Research »
Le PRDTC est fier de tenir sa série de webinaire 2022 : Level Up Research. Ces webinaires ont pour but d’informer la communauté du PRDTC sur des sujets de recherche diversifiés s’adressant aussi bien aux professionnels de la santé, aux chercheurs qu’aux patients, familles et donneurs partenaires. L’accès est ouvert à tous et gratuit. L’inscription est obligatoire.
Visitez le site web pour plus d’info et voir les enregistrements antérieurs.
Shelby Gielen, Jordy Hermiston, Alice Virani et Jordan Joseph Wadden – Exploring the ethical considerations of direct contact in pediatric organ transplantation; A qualitative study
Le 14 novembre 2022, nous avons eu le plaisir de recevoir Shelby Gielen, Jordy Hermiston, Alice Virani et Jordan Joseph Wadden pour nous parler d’une étude sur les considérations éthiques du contact direct dans la transplantation pédiatriques d’organes.
Résumé (en anglais)
Background
Non-anonymized direct contact between organ recipient and donor families has been explored internationally in the adult context, including the recent development of such a program in British Columbia. However, there is limited discussion about whether direct contact should be extended to pediatric settings due to clinician and researcher concerns of the potential harms to pediatric patients.
Methods
This qualitative project draws on narrative interviews with pediatric recipients, their families, and organ donor families. Interviews were semi-structured and deliberately naive to ensure participant-centred knowledge translation. Interview questions fell into three broad categories: developing context, determining the harms and benefits of direct contact, and identifying needs and safeguards. Interviews were conducted in two stages: those who were further removed from the transplant process occurred first and informed the approach to interviews with those who more recently went through the transplant process.
Results
Twenty-nine individuals participated in twenty in-depth interviews, where some interviews included multiple participants from the same family. Participants were pediatric recipients and families who have aged out and are now in the adult program (n=13), pediatric recipients and families who are still in the pediatric program (n=11), and family members of organ donors (n=5). The study included participants from three major organ systems: kidney (adult n=3, adolescent n=6), heart (adult n=4, adolescent n=2), and liver (adult n=3, adolescent n=6). Eleven recipients indicated they had already met their donor family (n=5) or had learned substantial identifying information about them (n=6). Across all groups, only five participants expressed that direct contact might cause harm or discomfort, while twenty-three indicated they saw significant potential for benefits. Nearly half (n=14) focused instead on the harms to others rather than themselves, and nearly two-thirds (n=20) focused more on the benefits for others than benefits to themselves.
Conclusion
This study indicates that expanding direct contact to the pediatric transplant community may provide more benefits than harms to both recipients and donor families. Likewise, this expansion could take a harm reduction approach to mitigate the effects incurred by those who seek out information even where no direct contact program exists. Therefore, current practices employed in protecting patients and families from harm may have moved beyond reasonable measures. These results suggest a need to revisit assumptions in our practice as clinicians and researchers.
Shelby Gielen est une double greffée du foie, ayant reçu sa première greffe à l’âge de 14 ans et sa deuxième à l’âge de 27 ans. Le fait de devoir subir une troisième greffe du foie a incité Shelby à devenir une ardente défenseuse des greffés et de leur famille. Tout au long de sa jeunesse et de sa vie d’adulte, Shelby est restée active dans la communauté des transplantés en tant que mentor, bénévole et athlète aux Jeux canadiens des transplantés.
En tant que patiente partenaire à la recherche, Shelby est passionnée par l’utilisation de son expérience vécue pour intégrer le point de vue du patient dans le processus de recherche, ce qui permet d’améliorer les résultats et de trouver des solutions pratiques.
Jordy Hermiston est le facilitateur de programme des services aux familles de donneurs à BC Transplant, où il se consacre au soutien des familles de donneurs d’organes après le décès de leur proche. Jordy est un travailleur social agréé et, avant de travailler avec les familles de donneurs dans la communauté, il a exercé dans plusieurs unités de soins intensifs et services d’urgence de la région de Vancouver. Il est titulaire d’une maîtrise en travail social de l’Université de la Colombie-Britannique.
Alice Virani est la directrice générale des services d’éthique clinique et de soins spirituels du Provincial Health Services Authority (PHSA) et professeure adjointe de clinique au département de génétique médicale de l’UBC. Alice est une défenseuse passionnée des décisions et de la prestation de soins de santé fondés sur l’équité, en mettant l’accent sur la sécurité culturelle, la pratique fondée sur les traumatismes et l’humilité. En plus de son travail à la PHSA, Alice se passionne pour le rôle de l’éthique à l’échelle nationale et est fière de siéger au Groupe consultatif interagences en éthique de la recherche, au Comité d’éthique des IRSC et au Groupe consultatif sur l’éthique en santé publique de l’Agence de la santé publique du Canada.
Alice est également une éducatrice et une chercheuse respectée, et elle est une universitaire et une collaboratrice compétente avec plus de 50 publications évaluées par les pairs et de multiples subventions de recherche. Avant de s’orienter vers l’éthique, Alice était conseillère en génétique au sein de la division de médecine fœto-maternelle du Columbia University Medical Center à New York. Elle est titulaire d’une maîtrise en sciences humaines de l’université d’Oxford, d’une maîtrise en conseil génétique du Sarah Lawrence College, d’une maîtrise en santé publique de l’université de Columbia et d’un doctorat en génétique et éthique de l’UBC. Alice est professeure adjointe de clinique au département de génétique médicale de l’UBC.
Jordan Joseph Wadden est bioéthicien à temps plein et chef du service d’éthique du Ontario Shores Centre for Mental Health Sciences. Il anime également un centre régional d’éthique qui regroupe d’autres hôpitaux, des centres de santé ruraux, des centres pour enfants et des organismes communautaires de santé mentale dans la région du Centre-Est de l’Ontario. Son approche donne la priorité à l’inclusion des voix des patients et des familles et met l’accent sur les avantages de la prise de décision clinique en étant confortablement mal à l’aise.
En tant que chercheur et défenseur des droits, le travail de Jordan se concentre sur l’accès équitable aux soins de santé, la défense des droits des personnes handicapées et la mise en œuvre de l’intelligence artificielle et de l’apprentissage automatique dans les hôpitaux. Il termine actuellement un doctorat à l’Université de la Colombie-Britannique, où il s’est intéressé à la capacité du patient à consentir et aux obligations du clinicien lorsqu’il utilise une intelligence artificielle puissante dans les diagnostics. Il est titulaire d’une maîtrise en philosophie de la Toronto Metropolitan University (anciennement Ryerson University).
ity of Alberta and has received training in patient-oriented research through the University of Calgary’s PACER (Patient and Community Engagement Research) Program. He is the Patient, Family, and Donor Partnerships & Education Manager with the Canadian Donation and Transplantation Research Program. In this role, Manuel builds relationships patient partners with investigators and strengthens capacity among CDTRP patient partners.
Anders Billström 
Gareth Wiltshire
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Sherrie Logan 
born and raised in Edmonton, AB. With a degree in Music Performance (saxophone performance) and Education, Lindsey has taught for over a decade in the Edmonton Public School system. When she is not teaching, she is very involved in the music community, performing in the Edmonton Winds, conducting her own community ensemble (The Beer League Band) and on numerous musical boards across the province. For the past 5 years, Lindsey has had to take a break from teaching after having her amazing son, George. Maternity leave did not goes as expected as George was diagnosed with Dilated Cardiomyopathy at 5 months old and required 2 heart transplants before the age of 4. During this time, Lindsey has also began to dedicate her time building and expanding her charity: Big Gifts for Little Lives, where they raise money to fund Pediatric Heart Transplant research at the Stollery.
Dr. Caigan Du is a scientist at the Vancouver Coastal Health Research Institute and an assistant professor in the Department of Urologic Sciences at the University of British Columbia. He received a Ph.D. degree in Biochemistry in UK and postdoctoral training in Immunology in USA. He is interested in the pathogenesis of kidney ischemia-reperfusion injury and transplant rejection, and molecular control of urinary malignancies. He has been studying the impact of kidney donor-derived factors on renal allograft rejection, and the molecular pathways of kidney injury and regeneration in experimental models. He is also interested in developing medical solution including drugs made from natural compounds for all kinds of health problems, including immune disorders, organ preservation, kidney failure and urinary cancer. He is the PI of many grant supports from the Kidney Foundation of Canada and the Canadian Institutes of Health Research.
Heather Badenoch is a non-directed living liver donor and communications strategist. As the president of Village PR, she provides strategic communications direction and training to not-for-profit clients in community and health. An active transplant volunteer, Heather helps transplant candidates find living donors by running their public appeals, small and large, pro-bono. She also mentors potential living donors on the path to living donation. Heather is a volunteer with the UHN Centre for Living Organ Donation and the Canadian Donation and Transplant Research Program. She and her spouse adopt rescue dogs and volunteer together with Community Veterinary Outreach, a group providing free veterinary care to the pets of people who are homeless.
Sean Dicks is a clinical psychologist who has 20 years’ experience supporting both families of organ donors and transplant recipients. While it is rare for him to have contact with a donor family and recipient linked to the same organ donation-transplantation event, his contact with families who have lived experience with organ donation on the one hand, and patients who have received transplants on the other hand has provided opportunities to explore how their journeys become linked when they attempt to make sense of and find meaning in their respective crises.
Terri Hansen-Gardiner is a Cree speaking Metis woman from Northern Saskatchewan as well as a 10 year Breast Cancer Survivor. Her tireless spirit and dedication to her community is undeniable. Terri is a cancer survivor who travels around the province to provide assistance, information, and support to Indigenous patients who are trying to access and navigate the cancer care system.
Dr. Golnaz Karoubi is Assistant Scientist at the Toronto General HospitalResearch Institute and principal investigator in the Latner Thoracic Research Labs. She currently holds an Assistant Professor appointment in the department of Laboratory Medicine and Pathobiology and a cross-appointment in the department of Mechanical and Industrial Engineering at the University of Toronto. Dr. Karoubi received her PhD in Applied Science and Engineering at the University of Toronto and joined the Lung Regenerative Medicine Program in the Department of Clinical Research in Berne University, Switzerland for a post-doctoral research fellowship. She stayed on as a Group Leader in 2008 to direct the basic and transitional science as related to Cancer Stem Cell and Lung Regenerative Medicine in the Department of Biomedical Research at the University of Berne until 2012. In early 2012, she joined the team of Dr. Tom Waddell at the Toronto General Hospital Research Institute as a Senior Scientific Associate and was appointed to Assistant Scientist at the Toronto General Hospital Research Institute (University Health Network) in November 2019 and to Assistant Professor in the Department of Laboratory Medicine and Pathobiology in July 2020.
Dr. Haykal graduated from the University of Ottawa Faculty of Medicine in2007 as class valedictorian and silver medalist, and subsequently completed her residency training in Plastic and Reconstructive Surgery at the University of Toronto in 2016. During her residency, she completed a four-year Doctorate of Philosophy (PhD) in tissue engineering, regenerative medicine and immunology with a focus on tracheal reconstruction. She obtained numerous grants and awards including a CIHR Vanier Scholarship. Dr. Haykal then pursued fellowship training in microsurgical reconstruction at the Albany Medical Centre in New York. Dr. Haykal joined the University Health Network and the Toronto General Hospital in 2018. Her clinical focus is on complex oncological reconstruction and microsurgical reconstruction of the breast, head and neck and extremity. She started a lymphedema program in 2019 where she offers microsurgical techniques for the treatment of lymphedema.
Dr. Ahmed is a Professor in the Cumming School of Medicine at the University of Calgary. The recipient of the 2022 Hypertension Canada Senior Investigator Award, she is a nephrologist and clinician-scientist with a focus on sex and gender differences in human cardiovascular/kidney physiology and clinical outcomes. Dr. Ahmed is the Vice Chair (Research) for the Department of Medicine, Lead of the Libin Institute Women’s Cardiovascular Health Research Initiative at the University of Calgary and Lead of the Alberta Strategy for Patient Oriented Research Capacity Development Platform. Dr. Ahmed is an Advisory Board member for the Canadian Institutes of Health Research Institute of Gender and Health, a member of the Canadian Medical Association Journal Governing Council and the President-Elect for the Organization for the Study of Sex Differences.
r. Christopher Nguan is an Associate Professor at the University of British Columbia in the Department of Urological Sciences, Surgical Head of Kidney Transplantation at Vancouver General Hospital and the Director of the Surgical Technologies Experimental Laboratory & Advanced Robotics (STELLAR) facility at Vancouver General Hospital.
r Caroline Lamarche is a clinician scientist and transplant nephrologist at Maisonneuve-Rosemont Hospital. She is an assistant clinical professor at the Université de Montréal. After her nephrology training at the Université de Montréal (2015), she completed a Master degree on the use of adoptive immunotherapy to treat/prevent BK nephropathy in kidney transplant recipients. She then pursued a post-doctoral fellowship with Dr. Megan Levings at the University of British Columbia on the use of chimeric antigen receptor (CAR) regulatory T cells (Tregs) to induce transplant tolerance. Her lab is working on the development of adoptive immunotherapy in nephrology and understanding Treg dysfunction.
Dr. Tandon is an Associate Professor of Medicine, Co-Director of the Cirrhosis Care Clinic, Transplant Hepatologist and lead of the Cirrhosis Care Alberta quality improvement program. She obtained her training at the University of Alberta, the Hospital Clinic in Barcelona and Yale University. Her clinical practice and research are focused on cirrhosis with research interests including cirrhosis related complications, malnutrition, frailty, exercise therapy, palliative care, integrative health approaches such as meditation and knowledge translation. It is her career goal to provide wholistic, interdisciplinary, evidence based, patient-centered care through education, empowerment, engagement and team-work.
Emily is a PhD student at the University of Alberta, where she completed her Master of Science (MSc) degree in medicine. With a passion for patient-oriented research and a commitment to improving health outcomes, Emily’s doctoral project focuses on EMPOWER, a 12-week online mind-body wellness program designed for adults living with chronic health conditions.
Dr Basil S. Nasir, M.B.B.Ch
Dr. Victor Ferreira is an Assistant Scientist in the Ajmera Transplant Centre at the University Health Network (UHN) and the Toronto General Hospital Research Institute (TGHRI). He is also an Assistant Professor at the University of Toronto in the Department of Laboratory Medicine and Pathobiology (LMP). He completed his PhD in Medical Sciences – Infection and Immunity Specialization at McMaster University in 2014 and post-doctoral training at UHN. His research program is focused on three pillars: I) using systems vaccinology to reveal insights into vaccine responses in immunocompromised individuals like transplant recipients; II) characterizing the impact of chronic viral infection on host immune responses; and III) developing novel methods for eliminating latent viruses in human organs. His work has been cited >2,500 times and is published in journals including the New England Journal of Medicine, Nature Immunology, the Lancet Infectious Diseases, Clinical Infectious Diseases, the American Journal of Transplantation and Journal of Infectious Diseases.