Giving Compass' Take:

• The Canadian Institutes of Health Research reports on how Indigenous patients in Canada can help shape the direction of kidney research, since they often face higher rates of the disease than the general population.

• What can this teach us about medical research here in the U.S.? In what ways can we make more of effort to reach out to the communities most affected by certain illnesses?

• Here's a giving smarter guide for donors when it comes to kidney disease.

Kidney disease is often called “the silent killer,” as many people who live with this condition do not realize they have it until the disease has reached its later stages. In Canada, kidney disease is particularly a concern in Indigenous communities, which often experience much higher rates of the disease.

Supported by the Strategy for Patient-Oriented Research (a partnership between the federal and provincial governments and a variety of other stakeholders), the Can-SOLVE CKD Network is taking a multi-disciplinary, pan-Canadian approach to finding innovative ways to prevent and treat this condition.

As part of its efforts, Can-SOLVE CKD created the Indigenous Peoples’ Engagement and Research Council (IPERC). This group, which is comprised of Indigenous patients as well as Indigenous and non-Indigenous researchers, helps provide guidance on the development and evaluation of research involving First Nations, Inuit, and Métis peoples.

“When my son was 19 years old, he experienced total kidney failure and needed a kidney donor,” recalled Helen Robinson-Settee, a patient volunteer with IPERC. “My older son ended up being his kidney donor and I became the caregiver, so kidney disease is an issue that has touched our family very closely. It was at that time that we learned about the Can-SOLVE CKD Network and decided to get involved.”

Cathy Woods, another patient volunteer with IPERC, developed kidney disease in 2010 and was asked by her physician, Dr. Paul Komenda, to get involved in the Can-SOLVE CKD Network. When she joined IPERC in 2015, she soon discovered that the patients actually had an opportunity to shape the structure and aims of the research.

Read the full article about bringing an Indigenous perspective to kidney research by Helen Robinson-Settee and Cathy Woods at Canadian Institutes of Health Research.