Research Award Recipients

University Health Network, 2026 - 2028, Kidney Health Research Grant, Exploring First Nations' perspectives about kidney failure and its treatment options- mixed methods, community-based participatory study

Co-applicant(s): Aminu Bello, Anukul Ghimire, Carl Everton James, Crystal Hardy, Devron Swaby, Jacqueline Getfield, Marc Hebert, Rory Silverberg

Lay Abstract

Background: Kidney disease is a serious health issue that affects many people in Canada, but Indigenous Peoples—particularly First Nations communities—carry a much greater burden. They develop kidney disease at younger ages, are more likely to experience kidney failure, and face extra challenges when accessing care. These challenges stem from systemic racism, disconnect between federal and provincial health systems, and the fact that many First Nations communities are geographically remote. These barriers create mistrust in the healthcare system and make it harder for First Nations to navigate care pathways. As a result, health outcomes are disproportionately worse for First Nations patients compared to non-Indigenous Canadians. While statistics clearly show these inequalities, numbers alone cannot capture the lived experience. Very little research has centered the voices of First Nations patients, families, and communities to better understand their experiences with kidney health, kidney disease and kidney care.

Purpose: This project aims to change that by placing First Nations voices and perspectives at the heart of the research. By working in partnership with patients, families, Elders, Knowledge Keepers, and healthcare professionals, we will explore how settler colonialism and the lack of cultural safety in the health system shape health care experiences.

Method: An Indigenous Advisory Council will guide the process at every stage to ensure the research is culturally respectful and aligned with community priorities. We will hold interviews and sharing circles, guided by Indigenous Storywork, to learn about patient journeys—from diagnosis, through dialysis, referral for transplant, and transplantation. We will explore care needs, barriers and supports that exist.

Participants: Caregivers, family members, community leaders, and healthcare professionals. We will review de-identified medical records from kidney programs in Thunder Bay and the Ajmera Transplant Centre in Toronto to track the patient journeys through the healthcare system. This will allow us to identify where delays, gaps, or inequities occur. By bringing together lived experiences and medical data, we will provide a holistic understanding of the challenges faced by First Nations patients with kidney disease. We will also highlight strengths, opportunities, and community-driven ideas for improvement. The findings will be shared with communities, healthcare professionals, and policy-makers to create practical recommendations to make kidney care more culturally safe, responsive, and accessible and improve kidney health outcomes.

Outcomes: This project will deliver practical, community-guided recommendations to improve kidney care for First Nations patients. It will highlight barriers, supports, and opportunities for change. We propose culturally safe strategies to improve prevention, early diagnosis, dialysis, and access to transplantation.

Patient Engagement: Patients are not only participants in this project but active partners. First Nations patients, families, and caregivers will help shape the study design, guide the questions asked, and co-interpret the findings. The communities will provide input to ensure the research reflects community values and priorities. Engagement will extend to knowledge sharing as well, with patients involved in discussions about how findings should be translated into practice and policy. This collaborative approach ensures that the project is accountable to the people it is meant to serve and that outcomes remain meaningful and relevant to patients’ real-life needs.

Relevance to Patients/Community: This project is rooted in the priorities of First Nations, who will be involved throughout the research process, ensuring their experiences and perspectives drive the work. By creating a space for First Nations voices to be heard and respected, the project will help build trust, highlight barriers to care, and co-develop culturally safe and responsive solutions.

Conclusion: The knowledge generated will not only guide healthcare providers and policy-makers but also empower communities with evidence they can use to advocate for better services. Ultimately, this work aims to improve day-to-day experiences of care, increase access to lifesaving treatments like transplantation, and contribute to health equity for future generations.