From survivor to systems change: Why I advocate for better digital health in Canada
People often ask why I spend so much time on advocacy when my cancer experience was positive. I had an incredible medical team who helped me become a survivor, a title I’ve claimed since my diagnosis on September 30, 2016. By mid-November, I was in remission and I finished chemotherapy in November 2018.
But even with excellent care, I saw gaps in the system, gaps that digital health could help close.
One moment stands out: after a dietitian consult, my hematologist couldn’t access those notes because they were stored in a different system. I was treated in the Ambulatory Care Unit not the cancer center and those systems didn’t talk to each other.
Later, through Young Adult Cancer Canada, I learned that patients in other provinces could view test results online in real time. At the time, that wasn’t available in Newfoundland and Labrador. Years later, it finally was, but it made me wonder: What else was I missing? Why are systems so different across Canada?
The more I learned, the more I wanted to help. Few Newfoundland and Labrador patients applied for national committees or conferences, so I did and became the voice at the table. Today, as I finish my tenure on several committees, I encourage others to apply. You don’t need to be a scholar, you just need to care.
Representation matters. Decision-making tables should reflect diverse lived experiences. I’ve walked away from tables where I felt like a “checkbox” because my time is limited, and I want to contribute where my voice is valued.
Patient partnership in healthcare design is still new, and yes, there are growing pains. But excluding patients affects adoption and buy-in for new products and services. Patients bring insight into what truly matters, what they value and need.
Digital health isn’t just about technology; it’s about connection, access, and equity. My advocacy is driven by the belief that every patient should have the same opportunities I had and more. Because when systems work better for patients, they work better for everyone.
Melissa Coombs, e-Health26 Patient Partner, St. Johns N.L., nine–year Acute Lymphoblastic Leukemia survivor
Learn more about Patient Partners at e-Health.
