Maureen worries about the professionalization of the patient partner role

Transcript

Okay, so there’s one trend that’s happening in patient engagement research that I find disturbing and that’s the – and I’ve heard espoused at various conferences that I go to – and that’s the one where people, some people are of the opinion that if you’re not involved in the project from beginning to end, and then it’s not meaningful patient engagement. And I think it’s important in a project to have a couple of patients who are engaged from beginning to end, but I think that within the project, you also bring in many other patient voices and at different entry points and we have to make those entry points really clear, like these are places where people can come into the project and maybe it’s a two-hour contribution, and you tailor it to your research. 

So we need to do that and that, in my mind that’s the only way we’re going to get diversity. Like I think that’s the way to get the diversity. So there is that trend where you’ve got to be like a professional patient engagement person and I find I don’t like that – that’s not for me either. I really want to have patients in different areas. So the two projects that I do in Ottawa, we have two different approaches to patient engagement. So in the one project we have this family advisory forum that we set up with families of people and they were at the project from the beginning until the end, and that’s worked really well. The other project we’ve got like advisors that we send things out to and can you take a look at this diary and you know this is too cumbersome, and what do you think of this and the questions […]. Completely different ways to go but each one tailored to that project and there’s no – it’s not you know one way fits all, like you’ve got to have that flexibility. But when I hear that if you’re not beginning to end then it’s not patient engagement, I find – I don’t like that attitude. I think it’s – because not everyone wants to do that or has energy to do that, or has the interest.

So I’ve had people say oh you know you should take that piece or course in Alberta and become like a patient researcher, so I have no interest in that. Like I hate data – I don’t want to do literature reviews. We had 335 articles that were reviewed for the project that I was on. Yes, thank you for telling me, great, go ahead, do it – I have no interest in that. And that doesn’t mean that I’m not a good patient partner, because I bring something else to the table. So that professionalization of patient partner, I think is the wrong way to go and I think that – and there is a trend for some people towards that and I think that we’re going to exclude a lot of people that way. So that’s something that we’re going to have to deal with in the years to come now because we are getting professional patients and they have various attitudes on other people who are participating. And I think we all have a contribution to make and we have to figure out how it can be done and to include as many people as possible.

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