Navigating kidney disease: Insights from a patient partner’s advocacy journey 

In 2011, Kate Chong received a life-altering diagnosis of kidney failure, marking the beginning of a transformative journey that reshaped her personal life and fueled her passion for patient advocacy. As a living kidney transplant recipient now, her story underscores the importance of understanding chronic kidney disease (CKD) and the powerful impact of community support and patient involvement in health care discussions. 

Over the years, Kate’s experiences with kidney disease not only altered her personal life but also ignited a passion for community service and volunteerism, culminating in significant roles with organizations like the Can-SOLVE CKD Network and the Kidney Foundation of Canada. Her story is a testament to resilience, community support, and the importance of the patient voice in health care. 

A life-altering diagnosis 

Kate’s health challenges began with initially benign symptoms that escalated dramatically. By the time her glomerularfiltration rate (GFR) reached a perilously low level, she faced immediate hospitalization. “It was a pivotal change in my life,” she notes, highlighting the urgency of her situation.  

Through strict medication, dietary changes, and ultimately a successful transplant with a kidney donated by her husband in 2017, Kate stabilized her health and deepened her commitment to advocacy. Reflecting on how her journey has led her to embrace a new role in raising awareness about kidney health, Kate says, “I’m forever grateful and thankful to my lovely husband who has given me the gift of life and that I am able to not only do my work and my volunteerism but also raise my children. I’m very, very fortunate.” 

Finding community and building connections 

Because Kate experienced kidney failure in her mid-20s, she advocates for the importance of education around kidney health for people of all ages, emphasizing that kidney disease doesn’t only affect older generations.

Kate’s participation in patient-focused initiatives like the Can-SOLVE CKD Network has helped her see firsthand the value of patient input in shaping research and health care policies. In the early days of her involvement with the network, which included supporting the initial grant for patient-oriented research and contributing to the evolution of the Patient Council (now known as the Patient Governance Council), she says she also benefited from the experience and support of the network and others with lived experience. “I think when you have people that are mentoring you… it makes it easier,” she says. 

Connecting lived experience with research 

Kate’s advocacy highlights a growing recognition of the need for patient voices in medical research and decision-making. In November 2024, she participated in the International Society of Nephrology’s PARADIGM meeting in Vancouver, along with five other patient partners from Can-SOLVE CKD. Addressing an audience of researchers, clinicians, and other interest-holders in the international kidney research field, Kate spoke of the importance of including patient partners in these conversations and noted that the “wonderful patient partners who I have had the pleasure to get to know [during this experience] have approximately 125 years’ worth of lived experience.”  

As patients increasingly take on advocacy roles, their insights pave the way for a more people-centred approach to health care, ensuring that diverse perspectives are included in conversations surrounding chronic illnesses. This evolution not only empowers individuals but also enriches the medical community’s understanding of patient needs and experiences. 

The role of a patient partner can be taken on not only by people living with kidney disease, but also by donors, caregivers, and family members. If you would like more information on how to get involved in research initiatives as a patient partner, please visit our Get Involved page.  

Watch Kate on CTV Morning Live, raising awareness about kidney health on World Kidney Day.