From Diagnosis to Advocacy: Transforming the Healthcare System with Patient Engagement

Roche Canada has partnered with patient advocates to author a series of articles to amplify their unique stories, experiences, and advice. These narratives, representing their own views, aim to inspire and mobilize, and provide valuable insights from those who have firsthand experience.

By Michelle Burleigh, Healthcare Advocate and Consultant

I grew up in a time when children were raised to believe that Canadian healthcare was free and could blindly be trusted. I believed that up until the day I was diagnosed with an aggressive and rare form of cancer called Acute Promyelocytic Leukemia (APL). At 36 years old, with an active lifestyle, I was the last person I thought would end up in that position. So, when I locked a muscle in my hip after a workout, I didn’t think much of it. Reinforcing my lack of concern was doctor after doctor who validated what I believed the issue to be, which was followed by painkillers that masked the problem rather than fix it.

Once the pain had gone on for weeks, I did the only thing left to do; I called (formerly known as) Telehealth Ontario – a service that provided health advice and information over the phone from registered nurses. Their response jarringly contrasted that of anyone I had previously spoken to. They advised me to drop what I was doing and go to the nearest emergency department.

Five hours later, I was admitted to Juravinski Cancer Centre to begin immediate treatment in a race against the clock. I was covered in bruises, with blood vessels bursting, hemorrhaging upon admission, and then my kidneys began shutting down as my temperature soared. The resident doctors immediately started me on chemotherapy while simultaneously running endless bags of blood products, antivirals and antibiotics. And all the while, I couldn’t help but think to myself, “I should never have had to push this hard to get a diagnosis”, which was closely followed by, “If I was a less assertive person would I have made it to a diagnosis at all?”

For many people diagnosed with APL the answer is no, and that was and remains an intolerable thought. What is happening, or more aptly, what is so broken in our healthcare system when a person can get to the point that I did, and only by literally fighting for her life?

Amid the chaos of treatment and the myriad of emotions that pummeled me in the days, months and years following my diagnosis, something unexpected happened: I found my voice, and with it, my purpose.

And I realized that I could help shape something bigger than just my journey—I could help shape the Canadian healthcare system.

What Patient Engagement Really Means

Patient engagement isn’t just about being polite to patients or using lay terms—it’s about making patients full partners in shaping healthcare policies, programs, and research. It’s about pulling up another chair to the decision-making table and saying, “We need your perspective.” 

Having been through cancer or other chronic health conditions, we offer insight that no textbook or degree can replicate. We know the anxiety of waiting for results, the frustration of limited      treatment options, and the struggle of navigating fragmented care systems.  Our insight is invaluable—but too often, it’s left out.  

As patients, we owe our quality of life – and sometimes even life itself – to those working in therapeutic and diagnostic development, clinical trials, policy and patient programs. How often do they witness the impact of their hard work on patients’ lives? Patient storytelling can highlight this magic, boosting morale and reconnecting them to the humanity of their work. But what about beyond the inspiration drawn from our stories?

Working with patients, being curious about our experiences, and understanding how our healthcare professionals’ expectations differ from practical application can also help ensure that healthcare delivery and research priorities are more patient centered. In fact, studies show that when patients are engaged, health outcomes improve, patient satisfaction increases, and hospital performance improves. And isn’t that what we all collectively want? To learn, grow, evolve and make things better for those who will come after us.

From Transactional to Transformational 

Let’s be honest—sometimes, patient engagement still feels like a checkbox. But when it’s done right, the results are transformative.

As patients, there are countless examples of how we can help shape and improve healthcare systems. I’ve served on leadership teams that redesigned patient engagement within entire businesses. I’ve worked on committees to help develop surveys that ensure the data collected reflects the gaps in the patient journey – which does not start or stop at diagnosis and end-of-treatment, respectively. I’ve helped healthcare professionals understand what it feels like to live the darkest days of our lives and how to be more empathetic and compassionate when delivering news to patients.

These experiences taught me something vital: books teach you how things are supposed to work—lived experience teaches you how things actually work. Patients bring perspectives that challenge beliefs and assumptions, and ground innovation in real world experiences. Without the convergence of these two critical understandings, we cannot possibly focus on what evolution is really required to improve.

Why Your Voice Matters

If you’ve ever felt dismissed, frustrated by your care, or wanted to help others through similar experiences, you’re not alone—and you’re not powerless either. Whether you’ve just been diagnosed or you’re in treatment, disease management, or living beyond disease, your story holds knowledge that can drive real change.

You don’t need to be a public speaker or a policy expert to get involved. You just need to believe that things can be better—and be willing to share what you’ve learned along the way.

5 Ways to Get Involved in Patient Engagement

Wondering where to start? Here are a few tangible ways to make your voice heard:

1. Share your story publicly: Blogs, podcasts, and social media platforms are powerful ways to raise awareness and advocate for change.

2. Support policy advocacy: Collaborate with patient organizations or write to local representatives about issues that matter.

3. Participate in health research as a patient partner: Research teams increasingly look for patients to help design, review, and shape studies that reflect real-world needs.

4. Join a Patient and Family Advisory Council (PFAC): You’ll work directly with healthcare leaders to improve services and experiences.

5. Engage with federal and provincial quality council organizations: Ontario Health, Alberta Health Services, and the BC Patient Safety & Quality Council regularly seek patient input for system-level improvements. Canada’s Drug Agency even added their first patient partner to their board of directors in 2024!

A Call to Action—for All of Us

We are at a turning point in Canadian healthcare, making it more important to advocate for improvements in the delivery of care. But we can’t do that without the input of those who live through it.

So, if you’re wondering whether your story is worth sharing—it is.

If you’re doubting whether you can make a difference—you can.

If you’re waiting for permission to speak up—you don’t need it.

Together, we can build a healthcare system that doesn’t just treat people—but listens to them, learns from them, and co-creates a better future for everyone.