If researchers feel they have ‘messed up’, Nicolas worries they will be less motivated to engage in further partnerships
Transcript
You know many people are saying this a window of opportunity, we have to advantage of it because it’s going to — if we mess up this opportunity to get patient in SPOR for now the SPOR unit, that initiative, if we mess it up, then that window will close forever and we’ll continue business as usual. And so there is a tendency to think like that. That, okay well — because it’s hard. It’s not easy. Researchers, I’ve been doing research many years for very often PIs I mean. Principal Investigators. They know each other. Some research they hate and they never work together. Others they love and they work together all the time. They publish together. Sometimes they even go on holidays together. They know each other’s kids. Whatever. Very close. And then to have patients being forced on them, you know, here, you have to deal with patients now. And there’s funding for that as long as you have a patient. Then it becomes — that is dangerous in the sense that it can become well. If it fails, and they have a vested — they can do that. Then, okay, they’ll give up SPOR, they’ll close it and okay they’ll go back to their normal way of doing things.
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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.