Misconceptions about patient partnership, Maureen feels, might limit the types of patients who get involved
Transcript
So you have to be really careful about what you’re – you know the options that you make available and maybe that person wouldn’t jump into that project just because of that one sentence – that could have turned them off. And so we adjusted it to make sure that well if they wanted to, and not that it was like it was a requirement of participating because the research world is – it’s like a bubble and people live in this bubble and if you’re not involved in that world, and even if you’ve been a research participant in a study, you don’t know what’s going on behind the scenes.
So there’s a lot of misconceptions about what it means to be a patient partner and we have to really explain that really clearly and show all the points of entry where you could jump in. And that’s where the diversity will come in, because you can’t be possibly a co-investigator from beginning to end if you’ve got a full-time job and you’re on a limited income, so you don’t – you know maybe they’re not even providing money for babysitting, who knows. And maybe the meetings are during the daytime. So if you make it so complicated, you are only going to get a small group of people.
So you have to really focus on the diversity that can come into the project and then how – what you can do in your research to make it doable. Because if you keep going the way you’re going, you’re only – you’re just going to do the same thing, you’re going to get a small group of people who are either retired or who work part-time and who have a certain income where they can forego other maybe paid employment so they can do that, and that’s not good for the future of patient partnerships.
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