Suzanne learned that she could contribute as a patient partner in many different ways
Transcript
I think I was expecting that being involved as a research partner, as a patient research partner or a citizen research partner, would probably be reading over some statistics and saying, yeah okay, that makes sense to me, I understand this, that you know, there’s nothing wrong here that I as a citizen could point out, and thinking you then signed off. But the ability or the opportunity to be involved and actually determining how some significant research money is going to be spent by sending a focus and choosing a focus and helping decide what, from a citizen’s point of view, is the most important priority right now. That’s pretty powerful. And when I understood that that was part of our role, and I think really that that, as more and more researchers are required partly for their funding or their ethics or whatever, to make sure that there is a patient voice in their research. I really think it’s going to become more and more, not just signing off at the end, but actual involvement, engagement, priority setting, reviewing, the whole knowledge translation business, I think it’s really a growing area of legitimacy that is going to be required, and I think again, is going to just add so much value to research.
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