Maxime thinks researchers need to include patients every step of the way
Transcript
Yeah, just involve patients every step of the way because there’s an adage in community organising that’s Nothing About Us Without Us. And I sincerely believe that it is a way to go forward in healthcare because if we’re truly going to move towards personalised medicine, involving patients from day one is as personalised as it gets. Because then you provide agency to those patients and you provide them with the knowledge they ultimately seek to gain, or the experience they ultimately want to see or to have in this sort of project. And so yeah, involve patients since day one, listen to their concerns and of course follow-up once you’re done your project to let them know — to let them see how the contributions made an impact on their projects.
Something that researchers should never do is just to have — again like I said, this is my big thing, just to have patients there for tokenism sakes. So just to listen to their voice, yeah, okay, thank you Mary for your inputs on Ob-Gyn practices — we’ll take it into consideration. And then never keep Mary in the loop of her feedback. Or just not listen to her at all, and just have her there I mean for no reason, other than just to show hey, we have her as a patient partner and she’s doing something great, but we’re not actually listening to her. That’s something researchers should never do.
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- Advice to others – MaximeMaxime thinks researchers need to include patients every step of the way
- Valuing contributions – MaximeThe honorarium and coverage of expenses really helped Maxime to be involved
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- Developing partnerships – MaximeMaxime suggests using a variety of strategies to find patient partners