Researchers should ensure that patients understand what it means to be a patient partner and collaborate together on a project, suggests Marc

Transcript

It is important to know the level of relevance, for sure, the more the research team… The more the research team tells the caregivers about the repercussions that they may have or the level of collaboration that is relevant, the more information concerning the level of collaboration and the repercussion that it may have, that will increase the motivation of other caregivers to get involved. Of course, we have the impression that we are very small in the research field which may seem very vague at the beginning, during the first experiences. And the more we collaborate in various studies, the better we understand the sense of research, of our role within these studies. But I must say that it is important to know the level of collaboration that is needed. To be told and explained the… The repercussion, I mean. Meaning to be explained what we are contributing, to concretely know what the outcome could be in the end. That’s it, we have the impression that we are in a big… Well, it is a wide field, but the more we are clearly and precisely being explained, not only our role, the level, but also the impact, the better it could be.

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