janvier 14, 2025

Over the past year and a half, members of the Can-SOLVE CKD Network gathered at workshops to discuss key strengths and future directions of the network, as part of the Inclusion, Diversity, Equity and Accessibility (IDEA) audit. The results of these discussions were published in December 2024, providing a valuable testament to Can-SOLVE CKD’s inclusive environment, while also highlighting new ways to better embody IDEA in our work.  

To lead the audit, the network recruited Keila Turino Miranda, a sex and gender expert and PhD candidate at McGill University. Through her career and training, Turino Miranda has experience working with the transgender, gender-diverse, and non-binary community and leading IDEA workshops. 

Taking the time to listen 

For Can-SOLVE CKD’s audit, Miranda guided network members through seven workshops between June 2023 and January2024, where patient partners, research team members, and staff came together in their respective peer groups for learning and conversation. Turino Miranda started the workshops by providing examples of inclusion, diversity, equity, and accessibility before opening the floor to participants to identify the network’s successes and areas for improvement within each of these categories.   

Turino Miranda emphasizes that the process itself is a testament to Can-SOLVE CKD’s inclusive environment, as peoples’ enthusiasm, comfort, and willingness to share perspectives gained momentum throughout each workshop. “The workshops showed how strong we are as a network and also showed that we collectively want to move in this direction together,” she says. “For me, I think that was a major finding of the audit.” 

Charles Cook is a patient partner with Can-SOLVE CKD who participated in two of the workshops with his peers. He says that at the first meeting, many people didn’t know much about IDEA principles, but the workshops were an excellent opportunity to reflect and learn about them.  

In online sessions, every point that was mentioned by a participant was documented as a virtual “sticky note”, and if the same concept was mentioned again, it was recorded as well.  

“I felt like my input was taken seriously, which is very cool for a patient partner,” Cook explains. “You want to feel like, if you’re going to give some time and energy to something, that it’s going to be taken seriously, and you’re going to see some outputs.” 

What we heard 

Some key findings from the audit suggest that Can-SOLVE CKD offers an inclusive environment, but more efforts could be made when it comes to improving network communications, as well as recruiting underrepresented groups—such as members of Black, Asian, and LGBTQ+ communities—to join the network.  

Turino Miranda says she’s proud of the fact that we took the time to properly assess the network’s current embodiment of IDEA principles and get the “lay of the land” before jumping into action. As a result, we were able to identify barriers to participation. For example, the audit revealed that some network members still have only a partial understanding of Can-SOLVE CKD’s scope and structure. As Turino Miranda points out, Can-SOLVE CKD is already taking some steps to revamp its onboarding materials to make them easier to understand.  

Putting recommendations into action

Cook—who never shies away from an opportunity to advance care and research for others—has also stepped up to the plate to help co-lead the development of a novel kidney health webinar series for members of African, Caribbean, and Black (ACB) communities in Canada. The project aims to increase the number of ACB folks who are screened for kidney disease, as well as raise awareness about the importance and impact of people with kidney disease co-leading research. The webinar series will also introduce participants to the Can-SOLVE CKD Network and its patient engagement tools, such as KidneyLink, KidneyPRO, and the patient engagement toolkit. 

Cook says, “The biggest takeaway [from the audit] for me is there are some voices missing from the table, and we need to do something about it. So, we started working on this ACB webinar series, which I am very excited about.” 

He underscores the need for such a webinar series, noting that members of ACB communities experience very high rates of kidney disease, and it’s important to increase awareness of the opportunities they have to be leaders in kidney research for their community.  

 “We know how good we are inside of Can-SOLVE, but the rest of the world doesn’t know,” explains Cook, emphasizing the need for new and effective outreach strategies. “If this webinar series goes the way we hope, people who never knew about Can-SOLVE are going to find out about what we do, that we do it well, and come join us at the table, because we need those perspectives to make kidney care and research better.” 

To learn more about our IDEA Audit process and our findings, check out our report.