Variation in patterns of illness across different groups indicates that things must be done differently, according to Nicolas.
Transcript
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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- 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.