Nicolas

Nicolas

Nicolas is a kidney transplant patient and an assistant professor at a university. Before receiving a new kidney, he had been receiving dialysis treatment for about 8 years. He was a student at the time, and wrote most of his PhD while sitting on a dialysis sofa at the university hospital. Since his graduation and as a professor, he has been involved in medical education and also in promoting partnerships as a patient and a researcher. Nicolas believes that the knowledge patients have to offer from their lived experiences is very important for research, but realizes that it is not always a natural process for everyone involved. He thinks that it is really important that patients and researchers are provided training to be good partners. In an ideal world, patients and researchers would have a coach when they are working together – someone who can help them solve their problems as they go along. A key challenge is to help patients see research as something where they can make a big difference. As a patient collaborator, he appreciates the learning and personal growth that comes from being part of research projects.

Patient
Researcher

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You know many people are saying this a window of opportunity, we have to advantage of it because it’s going to -- if we mess up this opportunity to get patient in SPOR for now the SPOR unit, that initiative, if we mess it up, then that window will close forever and we’ll continue business as usual. And so there is a tendency to think like that. That, okay well -- because it’s hard. It’s not easy. Researchers, I’ve been doing research many years for very often PIs I mean. Principal Investigators. They know each other. Some research they hate and they never work together. Others they love and they work together all the time. They publish together. Sometimes they even go on holidays together. They know each other’s kids. Whatever. Very close. And then to have patients being forced on them, you know, here, you have to deal with patients now. And there’s funding for that as long as you have a patient. Then it becomes -- that is dangerous in the sense that it can become well. If it fails, and they have a vested -- they can do that. Then, okay, they’ll give up SPOR, they’ll close it and okay they’ll go back to their normal way of doing things.

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I remember we came in, in a room like this, and there was a researcher sitting on this side of the table, and three patients on that side. And then -- and researchers were talking about their project. It was glomerular -- they were trying to get together a registry for sample, tissue samples and so. And they were talking and talking, I didn't understand anything they were saying. And they didn't even notice that we came in. We just sat there, and we looked at each other, the patients, and [laughter] and they just kept on going. Occasionally they would look at us, oh yeah, well we'll get to you in a minute. But they were just talking about a [cue]. “So John, how's it going with the samples in Toronto? Well yeah, I talked to the supervisor and blah, blah, blah.” They were just getting -- they were talking the day to day business of the research project, and we were like -- “yeah I talked to John and he can get me samples with that kind of GFR or that kind of . . .”  And we’re just like, so what do we -- how do we contribute you know? It just seemed like such a huge wall. I felt like I was in front of a wall. We talk about this, and we -- that's all we talk about, and “we'll get to you when we get to you.” And so, I felt it was weird. It was strange.

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So the same thing I always say is the same thing with doctors. Not all doctors want to do research. A few. Not all nurses want to do research. A lot of nurses just happy doing their job. So patients are just happy doing their job and just taking care of themselves;. So it’s a small portion, I think, of patient population that will be involved in research. So the ripple effect, I don’t know. I mean it’s very personal. I think in a hospital setting, when you see that one patient is very active and very involved with other researchers or the doctors and patients can have a feeling of, mm I don’t know, I don’t trust him, like he’s one of them. Because we live in a very confrontational kind of society where it’s always us and them. So there’s a feeling among patients that it’s us and them. And researcher, patients who become researchers are the ones who have beyond that and who have just thrown that aside, that sort of separation. So I’m not sure what the ripple effect of patients getting involved in research on other popular [unintelligible] besides the ultimate in [unintelligible] the research project.

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Yeah. It’s very difficult and I think it just didn’t happen on its own. The basic premise, as I say always, the basic premise is that patients have experience living the knowledge. I mean knowledge -- no, I mean knowledge about their disease through experience. They’ve experienced managing it. They’ve experienced the symptoms, whatever, so they have that. And that’s very valuable, I mean, a researcher who’s never had kidney disease or whatever disease, doesn’t have that. They have a very theoretical view of knowledge. A very theoretical knowledge about their disease and very advanced. I mean, obviously they’re, especially if they’re researchers, they’re very on the cusp of what we know. So they’re really on the boundary of what is known about the disease.

But yet, they’re very aware that that’s a limited position. They don’t know everything and they can’t solve everything, so. But, so, the key to the partnership is that. That they bring this sort of leading edge knowledge to a group of people about a disease, about a certain problem. And patients bring in what it’s like to live in that re... So that, in that sense, it can be a partnership, where both parties bring something to the table.

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And I think, and this is based on the premise that including voice, patients’ voice, in research will improve it. And that’s not really proven yet, solidly. I mean I know there are researchers who are very insistent on that, that we have proof, but we don’t. What we’re seeing is that it changes research for sure. It’s not the same anymore, but it... Does it make it better? We don’t know. I guess we’ll never know. We’ll have different opinions about it. But it’s more inclusive and I think in a way research, it is a natural human process to question and to think critically. So, in that sense, it should have a wider dissemination in this society where people feel they’re empowered to think critically about what’s happening to them or in their lives and so on.

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And there is a very big tradition in education with experiential knowledge, or experience in education. So we're trying to do that, and so thinking about patients and how they get involved in research or how they get involved in their care, or how they get involved in quality assurance in hospitals, for example, got me thinking about the value of that, but also got me thinking about how do we leverage it. How do we work with it? How do we mine it? How do we, you know, it's like raw, right. A patient telling a story about, you know, I was admitted in hospital in 1943, ever since then I've lived with chronic kidney disease, and my mother died and so on, that's the raw material. But then out of that raw material you can produce a consistent body of knowledge that is scientifically rigorous, that is useful, that you can rely on. So, you know, that's important.

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Policy makers. Yeah, I think, I mean the prevalence of disease in many parts of the world, in Canada as well, in different populations, and I'm thinking specifically about the Indigenous population -- it's completely off the map. It's unacceptable. It's just not acceptable that the incidence of kidney disease or diabetes in the Indigenous population is so out of kilter with the non-Indigenous population. It's just, I don't know the numbers, but it's pretty depressing. So, and that indicates that things have to be done differently. That current ways of doing things are not providing, are not leading to the results that we want. So one of the things I know, and research in kidney, and research in particular, traditional research methods, and the randomly controlled trial, for example, where you have a control group and a non, don't work. For Indigenous people, the idea that you’re going to give a placebo to somebody and the real stuff to somebody else is inconceivable. And so yes, we don't even think about yes, I mean from a methodological point of view, from a logical standpoint, how can you tell the effect? There are other ways of doing it, look for them. And I think that policy makers have every interest in supporting that kind of Columbus exploration kind of thing, or people are trying to look for other ways of testing and developing drugs, or treatments that don't involve that -- which yields very small information, very, very limited kind of . . . 

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But in general, I must say that my outlook towards research is dire. It’s becoming very difficult to conduct it. We’re living in more and more in a society where that kind of investment in something that doesn’t really return very fast, is not very politically accepted. And so funding is going to come more difficult. There are people, thankfully, who realize the importance of research and it’s important for the evolve, the development of a country. But a lot of it will be based on things that can provide immediate return. So maybe health research will be spared because if we can show that research is better and can lead to better results in the clinics then perhaps it will be and there will be more funding for it. I don’t know. But it remains to be seen whether patients will continue to be part of research teams, that’s for sure.

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Yeah definitely if we can show in some way that it makes a difference in terms of the quality of research being done, for sure. If we show also so that it makes a difference in the quality of life of Canadians or people, if we can sort of make a link, if they’re more involved in research, they’ll be better cared for and they will take better care of themselves, you know, make a difference. And besides that, I think you have to go one person at a time. Change does happen. It sometimes doesn’t go as fast as you'd like, but I think more and more patients are becoming militants and becoming advocates, or at least becoming aware that research is there. But in general, I must say that my outlook towards research is dire. It’s becoming very difficult to conduct it. We’re living in more and more in a society where that kind of investment in something that doesn’t really return very fast, is not very politically accepted. And so funding is going to come more difficult. There are people, thankfully, who realize the importance of research and it’s important for the evolve, the development of a country. But a lot of it will be based on things that can provide immediate return. So maybe health research will be spared because if we can show that research is better and can lead to better results in the clinics then perhaps it will be and there will be more funding for it. I don’t know. But it remains to be seen whether patients will continue to be part of research teams, that’s for sure.

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And I think, and this is based on the premise that including patients’ voice in research will improve it. And that’s not really proven yet, solidly. I mean I know there are researchers who are very insistent on that, that we have proof, but we don’t. What we’re seeing is that it changes research for sure. It’s not the same anymore, but it... Does it make it better? We don’t know. I guess we’ll never know. We’ll have different opinions about it. But it’s more inclusive and I think in a way research, it is a natural human process to question and to think critically. So, in that sense, it should have a wider dissemination in this society where people feel they’re empowered to think critically about what’s happening to them or in their lives and so on.


 

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I started my experience in a very positive way. I mean what that meant, the fact that we talked about it, was that my experience as a kidney and dialysis or a kidney patient was always surrounded by some sort of positive energy if you like, in the sense that we embraced the treatments that came with it whether it was pills that we had to take or dialysis that we had to perform. And so very quickly when the nephrologist advised that I should do that. So it’s always been, we’ve always felt as patients that we were surrounded. We were well taken care of. There was a safety net somewhere and that we could feel bad and feel really awful but in the end, hospitals were there and they would take care of us. So that’s what happened.

And I started dialysis. At the same time, I was studying, so I did my Masters in Education. I’m in higher education. And then I did my PhD. And most of my PhD I wrote sitting on my dialysis sofa at the university, which was quite an achievement and I think the experience of going through dialysis really transformed me and in many ways in a sense it made me listen to myself more and more being able to name things for myself and so on. So, that’s the general background. That’s where I come from. I finished my PhD and then the next day I got hired at the Centre for Pedagogy for applied pedagogy for the Health Sciences. [Les Sepass] it’s called at the [name] to work on medical education basically, and that’s what I’ve been doing ever since then in 2010. And at the same time, at the Faculty of Medicine, they started the patient-partnership movement, which became […]. So I very quickly became sort of us, I was sucked in, I say, because of my patient experiences and because of my research background and because of all those things like quickly, it was a natural fit with these people, with [name] who is a well-known figure in Canada with patient engagement. And I started working and I started doing different things namely, going to train people about integrating patients in care and in care delivery and so on. But also slowly into research activities. 

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So these people started off like that and then they said you know, the first meetings with the research team are very difficult. Researchers are on one side, patients are on the other side. And researchers, when you ask them a question, they’re used to being quick about things, so they give you an answer in two seconds. And they feel comfortable because they’ve said everything that has to be said. Whereas patients, you never get a two-second answer, you always... And they tell their story and they need to be heard. So there’s two different needs. And what I can say what we’re seeing anyways is that at first everybody talks to each in their, oh Mr. so-and-so, Dr. so-and-so. And then a year after, everybody was Mike and Lisa and Tom and Jerry. There was a change, there was a sort of a -- the ice was melted. And so to give you an example, some people really got involved in what they were doing. For example, there’s a good example in Ontario of a transplant ambassadors program where basically there... It’s a research project involving live donors of kidneys. And they sat a table with researchers who were just trying to figure out.

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I mean the limits are the same for everybody. Time, resources, ability and so on. The limits are the same. But in a research project, if a patient wants to get involved and then really conduct research then it’s something that we’re going to have to, you know. If there’s something that interests them and they care very much about it and so on, there’s no limit, they can -- I mean, no limit in terms of what they can do. The only limits are the same thing -- and in terms of roles, you know the beauty about role and the concept of role, is that it can evolve. So, at first you’ll play this role and then you play that role. And also it’s not, you know, unlike the metaphor for roles with the theatre where scripts are scripted and you can’t move away, roles can change. But they always reflect the expectations of others and what you do. And so in that sense, roles can evolve and they have to be negotiated and they have to hammered and they have to be discovered as a team progresses. There’s no set roles otherwise.

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I’m in education, and I’m expert and I’m very picky about those things. You know, for me one of the debates that we had in the Strategy for Patient-Oriented Research (SPOR) committee, the committee for the foundational curriculum was that there was a view from the other members who said that well, we’ll just put a, slap a few slides together and we’ll disseminate the knowledge and we’ll talk about them and we’ll make them talk in between little groups and we’ll make little activities like that. We’ll make it crossword puzzle, whatever. That was the to constitute training and in my mind, no, it’s not training, you’re just informing people. In my mind, training is a sort of a continuous follow up with when you’re doing something. 

So for me, in my mind, it would have been, for example in the Can-SOLVE network, the ideal situation, which is impossible because educationalists are dreamers and so the minute they start dreaming, money starts popping up and it’s breaking the dream, right. So, ideally, patients and researchers would be working a team and they would have a coach that would help them solve their problems as they go along. And in my mind, that’s the best way to learn. It’s not always possible, but that’s the way to learn when you’re in the minute, just in time kind of learning when you’re going through a phase with your team and for example, I mean typical in research teams, researchers tend to do their stuff, make decisions and then send documents to be reviewed by patients. That’s typical.