In Canada, Black people experience disproportionately high rates of kidney disease compared to the rest of the population.

Many individuals may not be aware of their risk, and those who are diagnosed often face delayed referrals, fewer treatment options, and poorer outcomes. Recently, a working group made up of people living with kidney disease, clinicians, researchers, and non-profit partners came together with a shared goal: to change the status quo. 

This new collaboration between Can-SOLVE CKD, the Black Health Alliance (BHA), and the Kidney Foundation of Canada (KFOC) launched its first initiative this year: a two-part webinar series aiming to provide culturally grounded information on kidney disease and ways to prevent it for Black communities, as well as highlight the importance and impact of Black people participating in research.  

“This work is critical, because it provides culturally grounded, accessible information on kidney disease and prevention tailored specifically for Black communities, helping to address gaps in awareness and care,” explains Omo Enilama, a research coordinator with Can-SOLVE CKD who led the development of the webinar series.  

“It also highlights why Black participation in research is essential—so that studies truly reflect our communities’ needs and Black people also benefit from the advances, treatments, and knowledge that research produces.” 

Strengthening kidney health through prevention 

Because the progression of kidney disease can often be prevented or slowed with medications and adjustments to lifestyle, the first webinar session, held in July 2025, focused on sharing information about early identification and prevention of kidney disease.  

The panel included Danayi Munyati, a health promotion specialist at BHA who lives with chronic kidney disease (CKD) and lupus nephritis, and Lynn Clarke, a support group facilitator with KFOC who also lives with CKD. Both shared their personal experiences of being diagnosed with kidney disease. Dr. Dolapo Abe-Dada, a family doctor, provided tips for prevention and early testing, while Dr. Oshorenua Aiyegbusi, a nephrologist (kidney specialist), discussed treatment options for individuals who are diagnosed with kidney disease. 

“We were able to bring in different perspectives and provide tangible information that I think people could use and go forward with,” says Tiyondah Fante-Coleman, BHA’s research and policy manager, who helped create the webinar series.  

Listening to community priorities 

To ensure the webinars were relevant to a Black audience, an online survey was circulated with support from Black-led and Black-focused organizations, as well as key health organizations, early in the planning process to collect feedback from Black communities about what they’d like to know about kidney disease prevention, care, and more. 

Fante-Coleman emphasizes the importance of this kind of approach, and to not assume what people want to hear. “It’s much, much more impactful that we actually know from community members themselves what they want to hear about,” she says. 

Expanding representation to improve outcomes  

The second webinar, held this fall, focused on an equally pressing and under-discussed factor related to kidney health disparities among Black communities: a lack of representation in research. Just as historical exclusion of women from research in the past has resulted in harmful or inaqequate treatments for women, a lack of representation of Black people in studies can result in delayed health monitoring and access to treatments.  

During the session, Suzanne Deliscar shared how working with Can-SOLVE CKD as a patient partner has allowed her to shape research questions and influence decision-making throughout the research process. Similarly, Jessica Ntofon described her experience as a patient partner with the Kidney Research Scientists Core Education and National Training (KRESCENT) program’s Patient Community Advisory Network.  

Clinician-researcher Dr. Ayodele Odutayo spoke about the ways in which lack of representation of Black people in research can negatively impact Black communities, while researcher Jemal Demeke provided an overview of privacy and ethics considerations for people considering getting involved in kidney health research as patient partners.  

Julie Wysocki, KRESCENT Program Manager with KFOC and a Black woman living in Halifax, Nova Scotia, who helped plan the webinar series, emphasizes the importance of Black representation in research.  “If we want more personalized medicines or [to better] serve certain communities, the only way to do that is for people to be involved in research to actually help [develop] treatment and interventions for ourselves,” she says.  

Fante-Coleman agrees, noting that efforts to improve the kidney health of Black communities through research aligns very well with the mission of the Black Health Alliance. “It’s really hard to tackle challenges without that data and that strong evidence to support what needs to be happening next for Black populations,” she explains. “Working with Can-SOLVE CKD has allowed us to expand our horizons through our partnership, but also really strengthen the work that we do.” 

Collaborating toward long-term change  

The webinar series is only a first step. The collaboration between the BHA, KFOC, and Can-SOLVE CKD—which is now expanding to include additional organizations—has developed a proposal to create a Black Research Council for Kidney Disease (BRC-KD). This council would bring together people with lived experience of CKD, clinicians, researchers, and policymakers to identify the research priorities of Black communities and co-lead studies that are relevant and aligned with their needs. The long-term goal is to improve kidney health outcomes for a population that has been underserved for far too long.  

Wysocki emphasizes that these next steps are essential for fostering meaningful change in how kidney health research is done. “If we just did this webinar and nothing else, well, that’s history repeating itself—it comes across as tokenism,” she says. “But [we’re saying] we actually do want you to be involved, and this [council] is how you can be involved. I think that’s really key.” 

To learn more about the Black Research Council for Kidney Disease (BRC-KD), please contact research coordinator Omo Enilama at omo.enilama@phc.ca.