Frand & Rhene did not feel that their roles were well communicated to them by the research team at the outset
Transcript
It started with that and evolved. So, I think in fairness they didn’t know – it’s a big project. It goes for a long time, so you really don’t know what your role is two and three years out and that’s what happened, it changed. Still advisory and all that sort of thing, but it became much more time consuming and much more interesting actually too. It’s all the same time and it was a huge learning curve for us and probably for the researchers as well. In fact, I know it was. What we would do is periodically we would go to a quarterly meeting at the first tier and that’s where they were doing summaries. The disadvantage of that is we didn’t know what went on in between and there’s a lot of people doing stuff all over the world and we had no knowledge of it. So, we would come in and we really didn’t know what was going on. This became an issue. They all knew but we didn’t have the – So, it became an issue and a little hard with time. We would ask a lot of questions and with a little patience on the side of the researchers it became a little easier and we felt – at the beginning we felt we really weren’t contributing anything to the process. But as time went on, I think we did a little better at it to the point where they were starting to say “gee, for the next meeting would you give us your thoughts on a particular issue.”
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- 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