For Maureen, it’s important for researchers to dispel myths about patients needing to have a scientific background to participate in research.
Transcript
So it’s really difficult. But I think the most important skill is that you’re able to communicate, you have to really be able to communicate with the people who are leading the project and tell them when you’re unhappy or when you feel that it’s not going in a good way – I think it’s really important. I think that’s probably – but I don’t think you need to have – I don’t have a science background at all, so I have a Master’s degree, so I do have one stats course which I almost failed, but we won’t go there, but I don’t have a science background. I’ve had to learn a lot over the past 18 years and I probably have a lot more knowledge now than I had, but I don’t think that that’s absolutely necessary.
Yet, when you talk to people about becoming engaged as patient partners, they say well I don’t have a science background – that’s one of the things I’ve heard. So there’s myths that need to be dispelled because once again you’re going to be – who you’re going to attract and you don’t want just people with science backgrounds speaking – giving their perspectives. So I think dispelling the myth is really important. And I think one of the ways that – like if I ever do give presentations on patient engagement and research, I’d put up a couple of PowerPoint slides with all those different ways that people can participate, and you know oh, oh, like and it can be something small, like just reading a consent form. And letting the researcher know that what if you gave me this, I wouldn’t understand it. Well that’s really important. So we need to kind of like break it down into smaller pieces and say like these are some of the examples of what you can do – so you don’t think you have to engage for three years.
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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