At only 13 years old, Thomas Ng was diagnosed with lupus nephritis, an autoimmune condition that causes inflammation of the kidneys. By the time he was an undergrad at UBC, he was studying engineering and living the life of an average university student – all the while receiving rounds of dialysis. “Let’s just say I had more dialysis than hot dinners during those days,” Thomas jokes. Now, several decades, countless treatments, and two kidney transplants later, this BC Renal patient partner is using his lifelong journey with kidney disease – and the years he spent in BC’s health-care system – to help shape the future of kidney care province-wide.
“Being a patient partner is like being part of a supergroup,” Thomas says, “but instead of music, we make health care better.”
Though the former professional engineer first entered the world of patient engagement in late 2019 – just before the onset of the COVID-19 pandemic – he’d been an active force in the kidney community for nearly three decades prior. In the 90s, he volunteered with the Kidney Foundation of Canada and joined the Chinese Renal Association (CRA), where he served in capacities such as peer support, committee member, and acting president. The CRA was also the site of his chance meeting with BC Renal staff member Helen Chiu, who attended one of the organization's monthly social gatherings and introduced Thomas to the concept of patient partnership. Five years after joining BC Renal (and the Can-SOLVE CKD Network) as a patient partner, his advocacy is as strong as ever.
“I’m all about this cool idea where patients like me get to team up with health-care pros as partners,” Thomas explains. “It’s a game-changer, working together to make life with kidney failure a bit more bearable.” He sees patient engagement as a means to re-evaluate, and even redefine, the way in which health-care providers and organizations approach care – shifting from a model that has historically prioritized the perspectives of health professionals, to one that aligns with patient voices and concerns. “Traditionally, the primary focus of health-care providers has been on improving patient longevity. However, from the patient’s perspective, setting priorities can be significantly more complex.”
This, among other reasons, is why Thomas believes it’s essential for patients to share their perspectives within the health-care system. During his time as a patient partner, he’s done so in a number of ways, including participating in key planning meetings and workshops, such as the “What Matters to You” workshop in early 2020; translating BC Renal resources for Chinese-speaking patients; joining committees and working groups like the Patient Governance Council at Can-SOLVE; and, most notably, becoming involved with the kidney research community.
“Between 2020 and 2023, I participated in a research group at UBC, providing feedback on the impact of using epitopes for kidney matching,” Thomas says. “I also served as a reviewer for research grant applications with the Canadian Nephrology Trials Network (CNTN), which involved providing feedback from a patient perspective.” Thomas’ work with patient engagement has even led him to challenge his fear of public speaking: earlier this year, the Faculty of Pharmaceutical Sciences at UBC invited him to present his kidney journey to over 100 students. Across multiple organizations and disciplines, his lived experiences continue to play a key role in informing care and research decisions – and, in the coming years, he hopes to see more patients leaving their mark.
“Your experience as a patient or caretaker, no matter how small it may seem, is invaluable to our health-care team,” Thomas says, when asked what advice he’d give to future patient partners. “Your personal insights offer researchers, clinicians, and frontline workers a perspective they can’t gain through academic training alone. With this understanding, they can prescribe better treatments, choose more relevant research topics, and ultimately provide us with the best possible care and outcomes.”
