In my first meeting with Chris Fraser, we’ve been speaking for maybe twenty minutes before he motions to me and the rest of the office. “Now, don’t take offence,” he says — not that he could cause me offence, not with his genial, objective nature — but I simply nod and he continues. “None of these people — none of them, and not you — understand healthcare, and I’ll tell you why.”

He sits up in his seat. “You don’t understand healthcare because you are healthy,” he says. “You don’t understand the system until you’re forced into it. And you’re only forced into it when you’re sick.”

He’s right. At least, I agree with him. I’m used to having American friends tell me how lucky I am when it comes to healthcare, coveting our simple, universal system. At 27 years old, I had never needed more from a physician than an antibiotic that would’ve cost me 25 dollars, even if I had to pay. For a healthy person like me, Canada’s healthcare system just works.

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“You don’t understand the health care system until you’re forced into it. And you’re only forced into it when you’re sick.”

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Chris had experienced the system from a different position, and it changed his perspective. Nearly a decade ago, Chris’s wife, Susan, died of leukaemia after a fight that spanned nearly two years. During those 2 years, Chris was forced to become fluent in healthcare language, and learned first hand how difficult the system was to navigate. Chris and Susan had fought the Ontario government to have a stem-cell transplant in the U.S. and won their case, but Susan had died before she was able to receive treatment.

“We learned several life-changing lessons about the healthcare system during Susan’s time in treatment,” he said. “Personally, I have a lot of gratitude for all of the amazingly talented doctors, nurses, support staff and management who make the hospital system work every day.”

But there was an undercurrent of frustration for Chris, too. He and Susan were bounced between providers, specialists, clinics, and institutions, all while fighting a legal battle to make it possible for Susan to obtain the treatment she needed. And there were millions of little things. “Getting to the facilities, finding parking, wayfinding in the hospital zone, and finding food and lodging are all challenges when you’re under stress and you don’t know the neighbourhood around the care facility,” Chris said.

While his wife fought acute leukaemia, Chris learned how non-linear the health system is. He experienced the twists and turns first hand. And he saw the health care system in an entirely new way.

It was this experience that made Chris realize that his relationship with the healthcare system was contextual: it would shift and change depending on whether he was receiving care through it, was in a support role, or watching from the periphery.

“When you are not in the midst of life and death discussions and have time for reflection, you can help others with your ideas and personal and financial support,” Chris says. “Pain plus reflection equals progress, as Ray Dalio says. To progress, you need to encourage people to share their experiences and bring forward ideas that can be executed that help others.”

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“We need to break down the barriers around health discussions and find better ways to ensure conversations take place about cause and effect when it comes to health — and when you lack it.”

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Nine years later, it’s clear that Chris has enough space from the pain he’s felt to reflect and grow. His past has led him to try and help others, going through similar experiences, navigate the health system and deal with the pain and frustration. Over many years, through his own personal experience and the experiences he’s observed, Chris has come to believe that communication is the area within healthcare most desperately in need of change.

“We need to break down the barriers around health discussions and find better ways to ensure that more conversations take place about cause and effect when it comes to health or when you lack it,” he says. “Everyone has to be active in the conversation: families, friends, companies, governments, patients, caregivers, voters, and inventors. Health in a city, a province, a country, is not just a government file or discussion based on social medicine.”

As soon as he says it, Chris sits back in his chair and looks at me, clearly deep in thought. I know what he’s thinking: Where do we start? How do we eliminate the fear the comes with talking about life and death and everything in-between? How do we begin to get a better understanding of a system that seems to constantly shift and change?

As if in answer to my unspoken questions, Chris speaks “Curiosity. To improve the health machine, people have to feel a personal responsibility to be curious, to pursue continuous learning, and have the confidence to take ownership of their wellness,” he says. “They have to understand that the health machine is focused on treatment. Returning to health outside of the hospital requires work by the patient and their caregiving team.”

He smiles. “You are your health, and your health is you,” he says. “The number one advocate for your health is you. Learning to advocate, I think, is about learning to ask questions and not feeling that because you aren’t a doctor, you shouldn’t try and get answers to build confidence about what your state of health is.”

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This is part of Dot Health’s #HealthStories series, where we highlight individuals from across Canada and their experience with the healthcare system in Canada as a patient, caregiver, or advocate.

Dot Health is a Toronto-based digital health company that believes health information belongs in the hands of its owner: you. Through our web andmobile app, we empower Canadians to own and control their health data, from clinics, hospitals, labs, and pharmacies.

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