ODTC Project Snapshot: Improving Access to Living Donor Kidney Transplantation (LDKT) in Communities Marginalized by Race and Ethnicity in Canada

Improving Access to Living Donor Kidney Transplantation (LDKT) in Communities Marginalized by Race and Ethnicity in Canada

What is this project about?

Project background

For many patients with end-stage kidney disease, a kidney transplant from a living donor provides the best outcome in terms of longer life expectancy and better quality of life. However, access to living donor kidney transplant (LDKT) is dramatically lower among racialized groups in Canada compared to white patients. This issue is partly due to insufficient knowledge among patients and communities about the benefits of LDKT, cultural or religious concerns, and barriers to communication about health problems outside the immediate family. Potentially modifiable barriers include systemic bias and racism, and lack of trust by patients in the health care system.

There has also been an absence of thorough discussion about planning for and implementation of best practices to address inequities in Canada. While this project focuses on South Asian and African, Caribbean and Black Canadians, the project findings and tools may be able to be adapted for other at-risk groups marginalized by race or ethnicity.

Objectives

This project aims to improve equitable access to LDKT in racialized groups in British Columbia and Ontario by implementing and evaluating culturally safe tools and clinical pathways.

Overview of activities

  • Identify and review existing tools and clinical pathways that support LDKT for South Asian and African, Caribbean and Black Canadians.
  • Develop culturally appropriate and safe educational materials and clinical pathways to support patients from racialized groups to explore LDKT.
  • Develop cultural safety training for health care professionals working in nephrology and kidney transplant.
  • Conduct a pilot study to evaluate the implementation of cultural safety training, education tools and clinical pathways developed through the project with the aim of encouraging their uptake across Canada.

How will the project improve the organ donation and transplantation system in Canada?

The project will contribute to:

  • Engaging South Asian and African, Caribbean and Black Canadian communities to better understand their challenges and needs in order to improve access to LDKT.
  • Increasing knowledge about living donation and LDKT among South Asian and African, Caribbean and Black Canadians.
  • Improving equitable access to culturally competent and safe services for South Asian and African, Caribbean and Black Canadians.
  • Increasing the knowledge of stakeholders including decision-makers and health care providers about the challenges faced by at-risk communities marginalized by race and ethnicity.
  • Providing the training, education materials and clinical pathways for use by across Canada.

The project leads

The project is led by Providence Healthcare in collaboration with the UHN Centre for Living Organ Donation.

Dr. Jagbir Gill, Associate Professor, UBC Division of Nephrology, St. Paul’s Hospital

Dr. Istvan Mucsi, Associate Professor, University of Toronto Kidney Transplant Program, UHN

“Change takes time, but we are channeling our passion and energy into something positive. We are planting the seeds so that eventually the system can be better for everyone.” Fadia Jerome-Smith, living donor kidney recipient for ACB communities

“In research and in healthcare, we need to have the difficult conversations about how we have historically contributed to the mistrust from racialized communities,” Lydia-Joi Marshall, Research Associate/ Community Liaison

EXPECTED PROJECT COMPLETION IN 2022

 

 

The Organ Donation and Transplantation Collaborative is an initiative led by Health Canada with provinces and territories (except Québec), Canadian Blood Services, patients, families, clinicians and researchers. Funded by Health Canada, the project Improving Access to Living Donor Kidney Transplantation (LDKT) in Communities Marginalized by Race and Ethnicity in Canada contributes to the Collaborative’s vision to achieve organ donation and transplantation system improvements that result in better patient outcomes and an increase in the number and quality of successful transplantations. For more information, please consult the Organ Donation and Transplantation Collaborative (the Collaborative) website: https://tinyurl.com/ODTCollaborative.