“Expert” patients to the aid of the health network

Christian Chabot, 63, is a hospital regular. He underwent two heart operations due to a heart defect, discovered by chance when he was 34 years old. He has since suffered a stroke and ended up in intensive care for sepsis, linked to a kidney stone. He now coexists with a mass, lodged behind his pancreas and closely monitored by his doctor.

“I live on borrowed time! smiled the big guy, who works and trains to keep in shape. “The health system saved my life. I feel indebted. »

Christian Chabot has found a way to return the favor to the health network. Since 2015, he has been a so-called “patient partner”, a major user of the healthcare network who shares his knowledge with hospitals and university researchers. In particular, he sat in 2021 on the committee of the Ministry of Health and Social Services which visited the 25 least efficient emergency rooms in Quebec.

“I had the chance to question complaints commissioners, user committees”, specifies the citizen of Quebec, met at his residence last week.

Christian Chabot was also able to share his personal experiences and suggest solutions to improve fluidity in hospitals. “I have already been followed by three specialist doctors, and to be discharged from the hospital, the three specialist doctors had to come and give it to me, he cites as an example. Sometimes it can take a day just to see all three doctors and get discharged. »

He believes that “better coordination” between specialists would make it possible to free up beds more quickly. Patients awaiting hospitalization, stuck in the emergency room, could thus go upstairs.

Quebec, a leader

More than a thousand patient partners are currently “mobilized” in the health network and the Quebec university world, according to Vincent Dumez, scientific co-director at the Center of Excellence on Partnership with Patients and the Public.

A small revolution in a system where patients had no voice in the past. “The patient was always seen as someone who, in the end, could bring little to the system,” explains Vincent Dumez, also director of community partnerships at the Faculty of Medicine of the Université de Montréal. He was someone to take care of. »

And yet, the chronically ill take on “98% of their care”, emphasizes Vincent Dumez. The 52-year-old is well placed to know. Suffering from severe hemophilia, he contracted HIV-AIDS and hepatitis C in the wake of the tainted blood scandal in the 1980s. From an early age, he strived to be “the most independent possible” in the management of his health problems.

This is what prompted Vincent Dumez to develop the patient partner concept in 2010 at the Faculty of Medicine of the University of Montreal. Since then, Quebec has become a world leader in this area. “Now we involve patient partners to think about how to improve quality in hospitals,” he says. It may seem obvious, but it has never been done before. »

The perspective of these users makes it possible to “break open” the many closed silos in the health network. “They are the only ones who have an overview,” says Vincent Dumez. Patients see what is happening in the hospital, at home, in their community, in their neighborhood. »

At the Faculty of Medicine of the Université de Montréal, students are made aware of these issues. They follow a course on “patient partnership” and are put in contact with “experienced patients” during “reflective workshops”. “They discuss situations that they have experienced in the clinic”, specifies Vincent Dumez.

research partner

Patient partners also participate in university research projects. Christian Chabot even co-constructed one with two professors from Laval University, Dr.D Caroline Rhéaume and Marie-Pierre Gagnon, holder of the Canada Research Chair in Health Technologies and Practices.

The objective of the study? To determine whether smartwatches, which collect physical activity data, encourage patients with type 2 diabetes to exercise.

“It’s really Mr. Chabot’s idea! confirms the DD Rheaume. The family doctor says he “organized a dinner” so that she could meet Marie-Pierre Gagnon, a researcher she did not know.

Once the project got under way, Christian Chabot took part in all of the research team’s meetings. He also commented on the first version of the scientific article. “We, what we want to know is if it makes sense, explains the DD Rheaume. Does he understand what has been written? Are numbers too complicated? »

The article was eventually published in the journal mHealth in October 2021. The name of Christian Chabot appears there, alongside the other co-authors. The team now wants to find a way to transfer the data collected by the watches directly into the patient’s electronic medical record. A technological challenge among others in the network.

Christian Chabot considers it “inconceivable” to still come across “a committed line”, as when he was “young”, when he contacts his medical clinic. “There are technologies, virtual agents, that could be used to pick up calls and redirect them to the right people when they’re available, but at least not drop them into the void,” he says.

Christian Chabot wants to improve the healthcare system. But he also wants to help his peers, as his roommate did before his second heart operation. He hesitated then to undergo this intervention, knowing the rehabilitation which awaited him. It was a matter of life or death. Too delicate a question to ask those close to him, he thought.

“I asked him what he would do if he was in my position, said Christian Chabot. He had had five heart operations. He said to me: “I would say yes right away, even if I have a 50% chance of staying on the table.” In that moment, I saw what one patient could do for another patient. He had knowledge that I did not have. »

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