Supports needed – Linda


Projects move forward more constructively, according to Linda, when patients receive coaching to help them understand their role and expectations.


And I know that the Canadian – the Ontario patient and caregiver group, they give coaching to patients. I think it’s probably a good idea for the bigger projects. And certainly if there is an agenda, if you will, either specific, or just a broad agenda of what – for time commitments that should be a session, an interview, or a meeting with the patient beforehand to let them know what’s going to be required down the road, that shouldn’t be – come as a surprise. But definitely if there is an agenda of what is specifically needed or required. A lot of patients go into these projects as a kind of therapy, and to talk about their experiences, and even sometimes to talk about their negative experiences, and to rant a little bit. And it can… I don’t think in many cases it’s the right context for that kind of dialogue. And I think it can keep things moving forward more constructively for everybody if patients are made aware ahead of time, before agreeing to be in a project. This is what we’re going to need, is this something that’s interesting to you? Yeah, so from a number of angles about what are you comfortable providing this kind of input, do you have the time to provide – to be a part of these committees? But yeah, I think in – it – maybe it’s not necessary all the time. Maybe for a focus group the researcher could say at the outset, this is our agenda, and this is the kind of information we’re looking for from you, just to sort of set the tone. But I think for some – in some cases the coaching – and I know that a lot of places across Canada do provide this, so there would be definitely already, you know, organisations or – committees or organisations to tap into that already do this for patients who are going to be part of patient engagement projects.

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