At Can-SOLVE CKD, our members have experienced first-hand the value in close partnerships between patients and researchers – but now it’s time to expand this vision beyond the network to include better collaboration between these groups across Canada. To support this goal, the network has recently launched a new and improved KidneyLink platform.
KidneyLink was originally launched in 2019 as a means for connecting researchers and people affected by kidney disease, including patients, family members and caregivers. It was designed to be a one-stop-shop where researchers can post studies and recruit participants, and patients can visit the site to learn about the opportunities available and more easily become involved. However, users reported some barriers to engaging with the site, such as the need to create a user account and the use of technical jargon to describe research.
Nancy Verdin is a patient partner at Can-SOLVE CKD who helped provide feedback on the platform and participated in its redevelopment. “It’s really hard for most patients, including me, to read through [technical research documents], so it was important that we started providing lay summaries of the research,” she explains. “The other thing we did was make sure it was straightforward and easy for our researchers [to use] as well.”
As a result, the newly relaunched KidneyLink platform no longer requires a username and password, and describes research opportunities and results in easy-to-understand lay summaries. The new website also features filters that allow users to easily search key categories and find what they are looking for (e.g., genetics studies, quality of life studies, etc).
“The idea is to [have the platform] be efficient, useful and something you want to go back to,” says Verdin.
Graham Pollock, Communications & External Relations Lead at Can-SOLVE CKD, notes that the team also partnered with the Kidney Foundation of Canada to build up a training section that helps demystify some of the questions around patient engagement. For patients, this includes resources to help them understand what it means to be part of a research team. For researchers, KidneyLink offers tools and resources to help integrate patient partners into their research teams and share the results of their work more effectively.
By bringing together researchers and patients on a single platform, KidneyLink aims to improve kidney research in Canada. “What we’re all trying to do is bring the patient voice more actively into research and use that lived experience and those insights that patients have to develop research that’s more relevant, aligned with what’s important to patients, and ultimately leads to better health for people affected by kidney disease,” explains Pollock.
Verdin, who shares her own lived experience with kidney disease with the Can-SOLVE CKD Network, emphasizes how beneficial it can be for patients and patient partners to become more involved in research. “When you’re first diagnosed, you’re shell-shocked,” she says. “But by looking up research and being able to find out what’s going on… I’m learning so much about how our doctors and researchers are truly looking to improve not only how kidney disease is treated, but how that impacts the quality of life for the patient.”
She sees KidneyLink as a valuable tool to continue building these partnerships and advancing meaningful, patient-oriented kidney research in Canada. “By building that network [via KidneyLink], I think we build the strength and the opportunity to make a difference in kidney care,” says Verdin.