During this time of uncertainty, the A.C.T.I.O.N. project has paused all focus groups and in-person plans for the safety of those involved. Whatever parts of the project can continue while adhering to social distancing measures will proceed. We value the involvement of our community and patient partners, and we look forward to resuming our collaborative efforts when it is safe to do so.
Overview of the A.C.T.I.O.N. Project
The Centre for Living Organ Donation at University Health Network and Providence Health Care Research Institute at Providence Health Care are pleased to launch A.C.T.I.O.N., a joint project to reduce inequities in access to living kidney donation and transplantation in the South Asian and Black, African and Caribbean (ACB) communities in British Columbia and Ontario. The term A.C.T.I.O.N. comes from a creative interpretation of the project title: Improving Access to Living Donor Kidney Transplantation (LDKT) in Ethno-racial Minority Communities in Canada.
The 2.5 year project builds on the work of co-principal investigators, Dr. Istvan Mucsi and Dr. Jag Gill. It was developed and will be implemented in collaboration with national and local partners including:
- BC Renal Agency
- Black Health Alliance
- Canadian Donation & Transplantation Research Program
- Council of Agencies Serving South Asians (CASSA)
- Kidney Foundation of Canada, Ontario Branch and BC & Yukon Branch
- Indus Community Services
- Punjabi Community Health Services
- Sickle Cell Association of Ontario
- Taibu Community Health Centre
LDKT is the preferred treatment for patients with kidney failure because it provides better health outcomes than dialysis and lasts longer than a kidney from a deceased donor.
LDKT also results in significant improvements in quality of life and productivity of people with kidney failure, and a large cost savings to the health care system; the patient and societal benefits of a single kidney transplant have been valued at $2.7 million.
Access to LDKT is dramatically reduced among ethno-racial minority groups in Canada, with some studies reporting a 50-70% lower likelihood of transplantation in Indigenous and ACB populations (2-4). Culturally and linguistically competent education and other supports to help patients with end stage kidney disease (ESKD) identify potential living donors have been found to increase LDKT in ethno-racial minority groups in the UK, the Netherlands and the US. No such interventions targeting ethno-racial minority groups have been carried out in Canada (5-9).
The A.C.T.I.O.N. project will address this gap by identifying barriers to access and piloting interventions to reduce inequities in access to living donation and transplantation in two large and diverse communities. Lessons learned from the project will inform efforts to improve access and equity in living donation and transplantation in racialized communities across Canada.
AIMS & DELIVERABLES
1. Conduct epidemiologic analyses on disease burden and trends in LDKT among ethno-racial minority groups in Canada and develop a standard of metrics to measure and track inequities in access to transplantation.
2. Engage systematically with patient and community partners to identify cultural gaps in the current processes and materials to help ESKD patients from ethno-racial minority groups access LDKT.
3. Develop culturally competent educational materials and clinical pathways to help patients with ESKD from ethno-racial minority groups access LDKT.
4. Implement and evaluate these clinical pathways through a pilot project in BC and Ontario.
5. Describe the acceptability and costs of implementing the pathways.
6. Inform broad implementation and evaluation of these strategies based on project findings and a national consensus conference on improving access to LDKT in ethno-racial minority groups.
Visit Nefros.net for updates on the A.C.T.I.O.N. project
THE CENTRE FOR LIVING ORGAN DONATION AT UHN
TORONTO GENERAL HOSPITAL
PROVIDENCE HEALTH CARE RESEARCH INSTITUTE
ST. PAUL’S HOSPITAL