Challenging Experiences – Karen (2)


Karen describes an experience where she felt her involvement as a patient partner was tokenistic


I think, had very little idea of what they were doing when they invited patients to the table. And, so, I found that experience not to be one, I ended up leaving at some point, because, I felt that they really didn’t take your participation into account. They kind of wanted somebody to do their grunt work, you know, to book their place for their meetings or, take notes or, something. And, I didn’t feel that was appropriate, to ask someone to do your menial work and, that’s the involvement that you have, I don’t think, is acceptable. So, I stayed for a little while. I did bring that up directly to the researcher. And, confronted him on some of the behaviours that I saw. And, he was able to identify that he himself wasn’t really thinking or didn’t have a full idea of what a patient’s role would be. And, I think, that was helpful. He was willing to sort of look a little further and maybe understand the role a bit better. But, that was my experience with him. 

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