Frank & Rhene became friends with the researchers they worked with
Transcript
Rhene: Actually, yes. It’s been very interesting. We met –
Frank: – Interesting.
Rhene: – some interesting people. Part of the reason why we kept on with it is that you make friends with the people. You’re working with them and get to know them and …
Frank: They’re fun people. You know, they have a life other than research too, so. And that made it fun for us. We had a good time with them.
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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