Nicolas reflects on a time when patient partners felt “invisible” even when invited to join a meeting
Transcript
I remember we came in, in a room like this, and there was a researcher sitting on this side of the table, and three patients on that side. And then — and researchers were talking about their project. It was glomerular — they were trying to get together a registry for sample, tissue samples and so. And they were talking and talking, I didn’t understand anything they were saying. And they didn’t even notice that we came in. We just sat there, and we looked at each other, the patients, and [laughter] and they just kept on going. Occasionally they would look at us, oh yeah, well we’ll get to you in a minute. But they were just talking about a [cue]. “So John, how’s it going with the samples in Toronto? Well yeah, I talked to the supervisor and blah, blah, blah.” They were just getting — they were talking the day to day business of the research project, and we were like — “yeah I talked to John and he can get me samples with that kind of GFR or that kind of . . .” And we’re just like, so what do we — how do we contribute you know? It just seemed like such a huge wall. I felt like I was in front of a wall. We talk about this, and we — that’s all we talk about, and “we’ll get to you when we get to you.” And so, I felt it was weird. It was strange.
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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.