Within Nicolas’s department, his patient experiences made him a natural fit for a partnerships team
Transcript
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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- Learning From Other – NicolasNicolas views patient stories as raw valuable data that contributes to a broader body of knowledge
- Measuring Impact of Partnership – NicolasNicolas believes that there are benefits for patients as partners, but the impact on the research itself is still unclear
- Impact on Research – Nicolas (2)The voices of patients did improve the research, according to Nicholas, but he thinks we still lack good evidence.
- Impact on Research – NicolasNicholas explains that patients have “experience by living the knowledge”. They know their disease through experience.
- Challenging Experiences – Nicolas (2)Nicolas reflects on a time when patient partners felt “invisible” even when invited to join a meeting
- Challenging Experiences – NicolasIf researchers feel they have ‘messed up’, Nicolas worries they will be less motivated to engage in further partnerships
- Supports needed – NicolasFor Nicolas, there is a difference between training to inform and learning through continuous coaching.
- Looking forward – Nicolas (3)Funding is becoming more difficult but Nicholas hopes that health research will be spared
- Looking forward – Nicolas (2)Variation in patterns of illness across different groups indicates that things must be done differently, according to Nicolas.
- Looking forward – NicolasLinking engagement, the quality of research and impact on the lives of Canadians is key, says Nicolas.