Partnerships with patients involves on-going negotiation in Janet’s experience

Transcript

So there’s all kinds of roles for community partners in research, and in fact it’s really up to them to let me know, I think, like how they want to be involved. And in the example of the Research Ethics Board, yes, she had the whole community placed on – like so we had a few individuals identified as leadership but they represented the community, so that was really nice. I engage some knowledge holders or Elders in the research and provide them with honorariums and acknowledge them in whichever way they feel is appropriate on the research. And these people provide guidance and sometimes they don’t want to be acknowledged, which is fine, you know it’s really on their terms.          

I never do a research study that is not identified by the community as a priority for them, so that’s the first step. It’s like people need to say this is a problem, partner with us – like let’s work together on this. So that’s the first piece. I engage knowledge partners or knowledge-user partner community members in the design of the research study. They are engaged in the analysis of the research though sometimes I will hire – I have hired people from the community to work formally as a research assistant, so train them to work as a research assistant, to help with the design and the analysis piece as well. 

And then we also reflect the whole research process back to the community, so I’m always visiting like in that volunteer capacity. I have a presence in the community, but then I set up formal opportunities to go and talk about the research that we have underway, just as a way to inform the communities of what is going on. And then of course, at the end, the whole end of grant knowledge translation process, community partners are engaged to do that part as well. And so there’s presentations – we develop products that are identified as useful and relevant by community members, we test them out with community members. So there’s a whole process throughout the entire research study that community members are engaged in.

But through it all, it’s sort of a process of negotiation. There’s no assumption that people are going to want to be involved through the whole thing – like it’s sort of a trial and error thing as we go on. And it depends on what’s going on in their lives – sometimes they just don’t have the space and time and they just want to manage things, and that’s fine. I go off, I take care of something but then I bring it back and say this is where we’re at, is this okay to carry on.

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