The voices of patients did improve the research, according to Nicholas, but he thinks we still lack good evidence.
Transcript
And I think, and this is based on the premise that including voice, patients’ voice, in research will improve it. And that’s not really proven yet, solidly. I mean I know there are researchers who are very insistent on that, that we have proof, but we don’t. What we’re seeing is that it changes research for sure. It’s not the same anymore, but it… Does it make it better? We don’t know. I guess we’ll never know. We’ll have different opinions about it. But it’s more inclusive and I think in a way research, it is a natural human process to question and to think critically. So, in that sense, it should have a wider dissemination in this society where people feel they’re empowered to think critically about what’s happening to them or in their lives and so on.
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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.