Maureen feels that her lived experiences can have relevance to other patient populations
Transcript
Right, so some people think that you have to have that condition, or you have to be affiliated with that condition to contribute meaningfully, so no, for me it’s not. So in my area, I don’t need any research right now, I’m doing well, I’m good. But it doesn’t mean that my experiences don’t translate to some other disease group, or just in research on how to engage people. So I think meaningful to me means that I’m – I’m very big on mentorship, so are we going to engage some people who may later become co-investigators and who are going to be interested in it, and if it’s satisfying for them, like that’s – because obviously I’m going to take care of making sure it’s satisfying for me, but is it satisfying for the other people and are we doing something where they feel that they haven’t given up their time for nothing?
Especially in medical research, where if you’re engaging families or people who are ill, like that’s a big thing for them. You know they have other concerns to worry about too, so I think that’s what meaningful means to me and working with a team that’s willing to say well that was an error, that didn’t work, let’s see if we can fix it, or let’s see if – we won’t do that again next time. It’s not supposed to be perfect, right?
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- Supports Needed – Maureen
- Supports needed – MaureenFor Maureen, different levels of training, peer-to-peer learning, and training responsive to patients’ needs are important.
- Looking forward – MaureenMore diversity is needed in the kind of patients involved in research suggests Maureen
- Diversity – Maureen (2)Engagement is here to stay, but Maureen acknowledges some growing pains to work through as yet.
- Diversity – MaureenMisconceptions about patient partnership, Maureen feels, might limit the types of patients who get involved
- Advice to others – MaureenYou can start small, suggested Maureen, to see if partnering in research is something you enjoy
- Skills for partnership – MaureenFor Maureen, it’s important for researchers to dispel myths about patients needing to have a scientific background to participate in research.
- Relationship building – Maureen (2)Meeting face-to-face at the beginning was important for Maureen to make a connection
- Role determination – MaureenMaureen worries about the professionalization of the patient partner role