Meeting face-to-face at the beginning was important for Maureen to make a connection
Transcript
Right, so having – like meeting the researcher, like the lead researcher and really feeling that I could work with that person was really important to me. So a face-to-face meeting where the person really explained to me what it is that they want to do and connecting with me in some way, is really important. I don’t want to waste my time when there’s so many things that I could be doing that I don’t want to waste my time. So I think that that connection is really important. So I weighed that heavily, like do I really think that this is a tick box or does this person really want to engage patients and really want to do it as a learning like for both of us?
So I think that that relationship is really important. When we – when I got involved in the core outcome set project, we had – we developed – so the researcher and I developed a training program to get our families on board; so our families have no experience at participating in research, they have sick children, they volunteer to do this, now we have to explain what core outcome sets are and how this project is going to unroll. And I said to our lead researcher, you know I really think we should go to Vancouver and meet these people like face-to-face and do this training. Like I know it’s a lot of money in the budget for the research, but I have a feeling that it’s going to be really important.
And she agreed and off we went, which cost money to go from Ottawa to Vancouver. And it’s paid back like many, many, many times, and at the end of the – it was basically a meeting where we did a PowerPoint presentation at, one of the participants said you know you guys sent a lot of emails explaining stuff, today I got it. (Laughs) I really didn’t understand it – it was all gobbledygook to me before. And I mean this wasn’t written in gobbledygook – this had been vetted and vetted and vetted, but it was still just not there.
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