Transcript
It’s important for researchers who’ve had really positive experiences to speak to their fellow-researchers. So just as patients will have – and caregivers will have an impact on getting other people involved who are in the same situation as them, as I said people will – teachers listen to teachers, patients listen to patients – I think that researchers listen to researchers and so, on your end, you also have to advocate for this and get out there and share those experiences.
And share the lessons you’ve learned, and what didn’t work and what worked – I think there’s a big public relations (PR) job to be done there and you – patients have to do it on their end, but researchers have to do it on their end too. Because researcher to researcher, it’s going to be very impactful, because they know that you understand their reality, that you know what their life is like and this is what you’ve done and they can do it too. Whereas the same thing for patients – I understand that someone’s going to give up time to research and they’ve got a sick kid, that they’ve only got a certain amount of hours and they’d have to decide what’s important to them and what’s not, and I don’t want to waste their time. That would be a horrible thing to think that they had given up those hours and that their time is wasted.
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- Relationship building – MaureenMeeting face-to-face at the beginning was important for Maureen to make a connection
- 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