Karen feels that patient partners should have a forum to share their illness experiences

Transcript

The other thing about personal interest is, sometimes you come to the table and you have some undealt with issues that are around the subject that’s being discussed. And, I think, people need to be given time to, at the beginning of that, to express that. If you don’t, I think, it sits in the room and it’s like this silence in the corner that’s causing a problem in open communication. And, I think, it’s important that researchers get that. There may be some personal stuff here that people need to just disclose at the beginning and some concerns that they have. And, if they’re not heard, if you don’t allow them to be heard, I think, people start to feel like “Well, why am I even here?” So, I think, that was another piece they hadn’t thought about. That maybe when a person comes to the table, you need to ask them “What brought you here? And, what personal issues are you thinking in the background, as you come to this table? We may or may not have anything to do with that in our research but, we’d like to give you a chance to express that. And, I think, that’s really important.

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