Nicholas explains that patients have “experience by living the knowledge”. They know their disease through experience.
Transcript
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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- 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.