Frank and Rhene wished that their role had been explained to the whole research group
Transcript
Frank: I think before the group got going our role should have been explained to all the researchers. I think the resentment/tokenism approach that some researchers took would have been mitigated somewhat, if they knew why we were there. I’ve had it said to me “what could you possibly add to a research group”. So, I knew then that our role hadn’t been explained to them or that they just didn’t get it. I’m not sure what the problem was. It wasn’t all of them. It was just a few but it put a damper on our experience.
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- Learning From Others – Frank & RheneFrank & Rhene became friends with the researchers they worked with
- Impact on Research – Frank & RheneFrank and Rhene worry that patients and caregivers are asked to be the “guinea pigs” of patient engagement.
- Challenging Experiences – Frank & RheneFrand & Rhene did not feel that their roles were well communicated to them by the research team at the outset
- Role Determination – Frank & Rhene
- Motivations – Frank & Rhene (2)
- Role determination – Frank & RheneFrank and Rhene wished that their role had been explained to the whole research group
- Motivations – Frank & RheneFrank and Rhene would consider future patient partner opportunities if they feel worthwhile
- Developing partnerships – Frank & RheneFrank and Rhene feel that caregivers should be considered more often for partnerships
- Path to involvement – Frank & RheneAs a patient-caregiver duo, Frank & Rhene’s responsibilities as patient advisors evolved over time