Frank and Rhene worry that patients and caregivers are asked to be the “guinea pigs” of patient engagement.
Transcript
Rhene: I don’t know that we had a really big impact on the health care study.
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Frank What’s interesting on that point though, I had many people, not just one or two, but many show up and say what a great idea and why aren’t they doing that. I have followed the website and we’ve had a lot of people read our paper. So, we did something. And I think part of it was the novelty. But to address the simple question of did you make an impact on the study the answer’s probably no, not on the study, but maybe on where things are going.
Rhene: With patient caregivers involved –
Frank: With patient caregiver involvement.
Rhene: in research.
Frank: But we were again the guinea pig.
More content
- 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