Lifestyle changes can slow kidney disease progression, but many patients don’t have the practical, culturally relevant, and holistic information they need to effectively manage their health. This lack of support leads to worse health outcomes and deep inequities. 

To better support patients, a team of researchers and patient partners within the Can-SOLVE CKD Network set out to create a comprehensive website that provides kidney patients with a wealth of tailored information to help them manage their disease. The site, called My Kidneys My Health, has gained significant traction, receiving more than 20,000 views between September 2024 and September 2025. 

Dwight Sparkes, a 55-year-old from St. John’s, Newfoundland, living with chronic kidney disease (CKD), knows just how impactful this type of tool can be. When he was first diagnosed more than 10 years ago, he had little information on how to manage his disease. By doing his own research and changing his lifestyle, he was able to double his kidney function. He wanted the same positive outcomes for other patients and joined the research team to help create My Kidneys My Health.  

Patient partner Dwight Sparkes

“For someone who’s newly diagnosed with the disease, being able to access this ‘one-stop shop’ tool to [help] you manage your disease is a game changer for a lot of people,” says Sparkes. 

A trusted source for kidney health information

In addition to information on diet, medications, symptom management, finances, and mental and physical well-being, the website also includes tools that patients can use to track their self-management care.  

In a recent study focused on strategies to implement My Kidneys My Health into routine primary care and general nephrology clinical care, health care providers in Alberta reported that the website was relevant, reliable, and aligned with perceived patient needs for accessible information. The team distributed more than 950 postcards, 25 posters, and 400 one-pagers to health care providers to encourage them to share the tool with their patients.  

While My Kidneys My Health has already gained traction among the kidney community, the team is now working on further improving and tailoring its content to the needs of diverse communities.  

Building on success to reach more communities

In Canada, Indigenous people are two to four times more likely to develop kidney disease than the general population. Guided by Indigenous patient partners like Maureena Loth—a Dene Suline from Cold Lake First Nation in Alberta—the team is working to make the website more culturally relevant for First Nations and Métis people. Through her work with Can-SOLVE CKD, Loth has become a passionate advocate, encouraging her peers to get screened and learn how to protect their kidney health.  

Along with enhancing the website’s relevance for Indigenous people, the team also discovered that many users wanted more information about the link between kidney disease and sexual health—a topic that is rarely talked about, even in the doctor’s office. In response, the researchers conducted a survey to understand the current practices and perceptions regarding sexual health discussions in clinical care. They also conducted an environmental scan to identify and measure the quality of available resources. This work will support future adaptations of My Kidneys My Health to enhance the evidence-based information available.  

Other improvements are also underway including translating the website materials into French and creating printable materials to improve accessibility. 

Maoliosa (Mo) Donald, an Adjunct Assistant Professor at the Cumming School of Medicine, University of Calgary, has helped co-lead the project since its inception. She explains that My Kidneys My Health empowers people to find information that fits their own lives. For example, rather than being told to follow a low-sodium diet, users can explore different strategies to reduce salt in a way that aligns with their cultural and personal food preferences. 

“This work began with the idea of providing tailored information to support people in self-managing their kidney disease,” says Donald. “Rather than prescribing a single approach, My Kidneys My Health helps individuals set their own goals and make changes in the way that works best for them.” 

A model for patient-led research and engagement 

The team’s approach has been so successful that it has sparked interest from international groups seeking to learn from My Kidneys My Health’s model of co-development. Strong guidance from people living with kidney disease—such as Dwight Sparkes and Maureena Loth—throughout the development of the website has ensured that it remains grounded in the realities of patients’ lives. 

“This project is kind of like the gold standard when it comes to patient engagement,” says Sparkes. “Because no matter what it is and what task it is, it always begins and ends with us—the patient partners.”  

Visit the My Kidneys My Health website to see how it can help you or a loved one live well with CKD.