Frank and Rhene would consider future patient partner opportunities if they feel worthwhile
Transcript
Interviewer: So, I’m thinking about what made you want to stay and you had mentioned that you didn’t want to just – once you commit to something you want to stick with it. Was there anything that made it easier to stay or that could have made it easier to stay involved?
Clip #1
Frank: Some very good people that are involved in it. I couldn’t say no to them.
Rhene: So, yeah, we’ve made friends with them and –
Frank: – We’ve made friends.
Rhene: – also it’s very interesting.
Frank: And interesting too.
Rhene: We got to see things that you normally just would never get to see on how research is done or the healthcare system.
Frank: On the financial side and ultimately that’s where it’s going to end up whether we like it or not there’s just few financial resources supporting this stuff. I’m not alone on that. Some of the researchers we dealt with see my point and they’re not getting funding like they used to get.
Clip #2
Interviewer: In moving forward if you were to continue on other research partnerships or …
Frank: Well, I guess it depends on the project. I have enough experience, albeit limited, to know whether I would do a project. It would have to interest me and if it does I’ll go after it, sure. And give me a mix of the right people and they can think outside the box. I’m big on that.
A lot of the success in my personal medical history has been because I have a few doctors and myself that do
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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