Suzanne prefers there were common terms used for patient partners
Transcript
Interviewer: What would be your preference for terminology?
I honestly don’t know. Partly because it needs to be something sort of generic and fluid so that it’s not so restrictive that people can’t participate, who have a legitimate right to participate. I don’t know, citizen participant. Yeah, it needs to recognise the legitimate involvement in the research process, but also signify that I’m not the scientist, I’m not the medical expert, I bring a different perspective, legitimate but different perspective to the research. I honestly, I can’t come up with the term, I don’t know.
Interviewer: Does it having a terminology matter to you, is it important to have a very specific term or?
I would be more comfortable if there was a term, and if there was a general consensus of what that term referred to. And things evolve, terms do evolve when you either label it, it generally morphs into more or less according to use. But yes, it’s a lot more comfortable to me personally to be able to refer to something by a label or a term. That’s me.
More from: Suzanne
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- Learning From Others – SuzanneSuzanne learned that she could contribute as a patient partner in many different ways
- Supports needed – SuzanneSuzanne would like to learn more about how to read and interpret research data
- Balancing time and commitments – SuzanneFor Suzanne, participation has been manageable but wishes there was more time
- Defining partnerships – SuzanneSuzanne prefers there were common terms used for patient partners
- Path to involvement – SuzanneIn Suzanne’s role as a patient advisor, she helped to create online training videos