In Nicolas’s experience, only a small number of patients are truly interested and able to engage in research as a partner
Transcript
So the same thing I always say is the same thing with doctors. Not all doctors want to do research. A few. Not all nurses want to do research. A lot of nurses just happy doing their job. So patients are just happy doing their job and just taking care of themselves;. So it’s a small portion, I think, of patient population that will be involved in research. So the ripple effect, I don’t know. I mean it’s very personal. I think in a hospital setting, when you see that one patient is very active and very involved with other researchers or the doctors and patients can have a feeling of, mm I don’t know, I don’t trust him, like he’s one of them. Because we live in a very confrontational kind of society where it’s always us and them. So there’s a feeling among patients that it’s us and them. And researcher, patients who become researchers are the ones who have beyond that and who have just thrown that aside, that sort of separation. So I’m not sure what the ripple effect of patients getting involved in research on other popular [unintelligible] besides the ultimate in [unintelligible] the research project.
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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.