Nicolas feels that patient partner roles can change throughout the project
Transcript
I mean the limits are the same for everybody. Time, resources, ability and so on. The limits are the same. But in a research project, if a patient wants to get involved and then really conduct research then it’s something that we’re going to have to, you know. If there’s something that interests them and they care very much about it and so on, there’s no limit, they can — I mean, no limit in terms of what they can do. The only limits are the same thing — and in terms of roles, you know the beauty about role and the concept of role, is that it can evolve. So, at first you’ll play this role and then you play that role. And also it’s not, you know, unlike the metaphor for roles with the theatre where scripts are scripted and you can’t move away, roles can change. But they always reflect the expectations of others and what you do. And so in that sense, roles can evolve and they have to be negotiated and they have to hammered and they have to be discovered as a team progresses. There’s no set roles otherwise.
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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.