Nicolas views patient stories as raw valuable data that contributes to a broader body of knowledge
Transcript
And there is a very big tradition in education with experiential knowledge, or experience in education. So we’re trying to do that, and so thinking about patients and how they get involved in research or how they get involved in their care, or how they get involved in quality assurance in hospitals, for example, got me thinking about the value of that, but also got me thinking about how do we leverage it. How do we work with it? How do we mine it? How do we, you know, it’s like raw, right. A patient telling a story about, you know, I was admitted in hospital in 1943, ever since then I’ve lived with chronic kidney disease, and my mother died and so on, that’s the raw material. But then out of that raw material you can produce a consistent body of knowledge that is scientifically rigorous, that is useful, that you can rely on. So, you know, that’s important.
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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.