What lived experience teaches care: The journey of Vincent Dumez 

In this section :

“I am first and foremost a patient. An old patient.” 

This is how Vincent Dumez introduces himself, even after a life devoted to championing causes, sharing lived wisdom and shouldering many responsibilities. Activist, educator, administrator, and co-founder of the patient-partner program at the Université de Montréal’s Faculty of Medicine, he also brings his voice and vision to several boards, including Accreditation Canada. 

A long-time patient and a prominent advocate for patient partnership in Quebec and abroad, Vincent grew up with hemophilia, in constant dialogue with the healthcare system. Like many of his generation, he was impacted by the tainted blood scandal, a chapter in Canada’s history that laid bare deep fractures in safety. 

From that collective wound, Vincent began a new path. Not to run from what happened but to seek understanding. To turn pain into knowledge and silence into dialogue. He chose to stay. To stay, and to act. 

Guiding the system with lived experience 

What might have led to retreat or surrender became, for Vincent, a relentless will to understand and to spark action. Early on, he sought to bring a different voice to conversations about quality and safety in care: the voice of those who live it. 

After years of community work, much of it alongside people living with HIV, Vincent crossed into the academic world with a clear purpose: to make the patient’s voice part of its fabric. At the Université de Montréal’s Faculty of Medicine, he helped create a patient-partnership program that ushered in a new current, one where lived experience itself became a source of learning. Today, patient partners sit in classrooms, shape quality-improvement work and take part in decision-making. Not on the sidelines, but at the heart of the team. 

This model, now recognized in Quebec and abroad, rests on a simple idea: we cannot train competent clinicians without helping them understand what it means to live with an illness, a loss of autonomy, or a long and complex care journey. 

For Vincent, safety is not something you declare. It is something you weave into the care relationship. It rests on discourse, on valuing everyone’s knowledge, and on sharing decisions. 

Giving experience a voice and meaning 

Vincent has long defended an idea that still unsettles some: patients know. Over time, they develop a deep understanding of their body, their condition and the system that cares for them. They know what helps, what harms and what is missing. 

Yet this knowledge often stays hidden, rarely named and even more rarely valued. To change this, Vincent helped lead the creation of the first international typology of patient knowledge. This work gives form and language to what patients know, including experiential medical knowledge, self-management skills, relational knowledge, system-navigation skills and cultural knowledge. In doing so, it recognizes patients not only as care recipients, but as knowledge-holders whose insight can guide safer care. 

Vincent’s commitment to making patient knowledge visible has also found expression in practical tools. At the Centre of Excellence on Partnership with Patients and the Public (CEPPP), he helped design learning paths tailored to different conditions. These resources support patients in understanding their health, asking informed questions, recognizing risks and taking an active role in decisions. Because a well-informed patient not only protects their own safety. They also help prevent avoidable complications and, in their own way, ease the pressure on care teams. 

Navigating risk, together 

For Vincent, safety begins with a patient’s ability to understand what is happening to them, know who to turn to and make informed choices. That is why he insists on real, clear and equitable access to health information. 

His commitment is also rooted in lived reality, in the experience of a patient who had to learn how to safeguard his own well-being. “For 35 years, I have forged a stance: to take an active role in my own safety.” Hospitalized many times, Vincent estimates he has personally avoided between five and ten adverse events, some potentially serious or even fatal. His safety net, he says, is knotted first by him and those closest to him. 

He speaks of their essential role, recalling a moment when his father prevented a major safety breach during a hospital stay. Often, it is loved ones who spot the detail others overlook, who bring forgotten information back into view, who speak up when something feels amiss. Yet they are still too often regarded only as visitors, sometimes even as obstacles. 

The more vulnerable a person is, whether young, older, in distress or weakened by pain, the more essential their loved ones become. Inviting them into clinical discussions, offering clear guidance and giving them space to intervene are all part of safe care. 

Fostering a shared culture of safety 

Moving forward often begins with finding our community. For Vincent, patient associations, support groups and community organizations play a vital role in learning, offering comfort and turning lived experience into shared wisdom. They are spaces where fears, discoveries and questions are shared. Places to better understand oneself, to stand up for oneself, to act. Places where knowledge meets, grows and strengthens. 

Seen this way, safety is not only the responsibility of the healthcare system. It becomes a culture, a collective commitment, a thread woven between patients, their loved ones, healthcare professionals, leaders, researchers and decision-makers. 

Safety in care is never guaranteed. It is built and rebuilt every day, in every encounter. It requires rigour, but also humility. It depends on strong systems, but also on human connections. And it calls for shared responsibility. 

To be informed. To listen. To ask questions. To speak up. To take part. 

Whether we are healthcare professionals, patients, care partners or members of the public, each of us has a role to play in making care safer. Sometimes, that role begins with a question asked, a doubt expressed, or a vigilance shared. 

At the heart of safety lies a simple, essential principle: never do things for people, but with them. 

Related program