For Nicolas, there is a difference between training to inform and learning through continuous coaching.
Transcript
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.
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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.