Transcript
Rhene: There should have been some discussion ahead of time.
Frank: It was never defined.
Rhene: Well, as I said, we were just told that all we had to do was attend the quarterly meetings.
Frank: – Show up and …
Rhene: – meetings sort of thing and …
Frank: We were encouraged to jump in at any time but you feel so stupid because you have no idea what they’re talking about and what am I going to jump into. So, it took a while to get over that hurdle. So we could have better participated and maybe that should have been better thought out. Not all the patients and caregivers have the same education as the researchers. It is not what they do. They’re from all walks of life. We have academic backgrounds.
Rhene: – I have a medical background.
More from: Frank
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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