You can start small, suggested Maureen, to see if partnering in research is something you enjoy
Transcript
So for patients and caregivers, I would say that they should try it. They should just get involved and maybe start small and then see if it’s something that they enjoy, because you don’t have to start with participating from beginning to end in a project – you can start small. And work on that and see if it’s something that you really enjoy – if you don’t enjoy doing it, you shouldn’t be doing it. Like you should be getting something out of it, whether it’s just that you’re helping advance research or whether it’s in your child’s condition, or your own condition that you’re making life better for people who – it doesn’t matter what your motivation is but you need to maybe get involved on a small scale.
And if someone approaches you and you don’t want to get involved on a full scale, you could always say you know I’m interested but I’d like to do something small to start off with. And maybe they can find a place for you to do that. And get out there and take some of the training that – because you’ll get to network with the people who do it and will share their experiences, and most of the training now is down by webinar, so it’s not – and a lot of them they’re taped so you can watch them on your own time. It’s not like it used to be years ago – with the technology today it’s easier to go ahead and get some training. So I think that’s interesting.
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- 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