For Maureen, different levels of training, peer-to-peer learning, and training responsive to patients’ needs are important.
Transcript
So getting the patient and the caregivers involved in the training, I think is of utmost importance. I think you need to know – you need to go out and find out what it is that people think or people would like to know – like what would be the most helpful thing that we could tell you in a course? Find out what it is and really put that message out there – I think it’s really important. And I think, as I said before, diversifying the course is really difficult, so even if you did know levels, beginner, intermediate and advanced, that would be great, and maybe someone only takes the beginner level because that’s all that they really need, they want to participate and in one aspect of the research and they want to go to focus groups maybe and just talking about some of the outcomes that are important for that condition and what they think people should be looking at.
Well you know what, you don’t need to understand research from A to Z to go and say what you think is important for your condition, that you would like people to study. So I think that’s really important to make the training attractive to as many people as possible by not making it overly complicated.
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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