Kidney Check Project: Respecting Health and Data Sovereignty

Between 2012 and 2015, the First Nations Community-Based Screening to Improve Kidney Health and Prevent Dialysis (FINISHED) program brought mobile health screening teams to 11 rural and remote First Nations across Manitoba. These teams screened for chronic kidney disease, diabetes, and hypertension, testing 1,690 individuals in total. Of those, 84 people were selected for enhanced screening and voluntarily provided blood and urine samples. These samples were stored for up to 10 years for further research. 

The program has long benefitted from the involvement of Dr. Barry Lavallee, and Caroline Chartrand, Senior Nurse Advisor who have both been deeply involved in the project since its inception.  

When researchers and Indigenous communities partner to advance health research, it is essential to follow the OCAP® principles—ownership, control, access, and possession—that safeguard Indigenous data sovereignty. A core component of the Kidney Check Project, these principles are particularly important when dealing with biological tissue samples. For KIM, ensuring data sovereignty is crucial, given that Manitoba’s 63 First Nations represent five distinct linguistic groups, each with its own cultural values and belief systems. 

Guided by Elders, the project followed community-specific cultural protocols, ensuring the respectful disposal of biological samples. Following Elder recommendations, a pipe ceremony was held on September 25, 2024, at Seven Oaks General Hospital to honour those who provided the samples. This ceremony honoured the repatriation of the samples, ensuring they were handled in a culturally appropriate and respectful manner. 

The FINISHED Project is a partnership between the Diabetes Integration Project (FNHSSM) and the Centre for Health Innovation funded by the Health Services Integration Fund (FNIHB). 

To learn more about the First Nations Principles of OCAP® visit this link.