Linking engagement, the quality of research and impact on the lives of Canadians is key, says Nicolas.
Transcript
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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- 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.