People need time to become comfortable in the partnership, suggests Nicolas
Transcript
So these people started off like that and then they said you know, the first meetings with the research team are very difficult. Researchers are on one side, patients are on the other side. And researchers, when you ask them a question, they’re used to being quick about things, so they give you an answer in two seconds. And they feel comfortable because they’ve said everything that has to be said. Whereas patients, you never get a two-second answer, you always… And they tell their story and they need to be heard. So there’s two different needs. And what I can say what we’re seeing anyways is that at first everybody talks to each in their, oh Mr. so-and-so, Dr. so-and-so. And then a year after, everybody was Mike and Lisa and Tom and Jerry. There was a change, there was a sort of a — the ice was melted. And so to give you an example, some people really got involved in what they were doing. For example, there’s a good example in Ontario of a transplant ambassadors program where basically there… It’s a research project involving live donors of kidneys. And they sat a table with researchers who were just trying to figure out.
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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.