Path to involvement


Rhene: Okay. So about six years ago we were asked to be in a health research project and our roles were as patient and caregiver. They seemed to be happy with what we did in this project, so as a consequence we were asked to take part in a much bigger research project that involved three teams, two countries and was to go for six years. Our part –

Frank:  Well, five. Five, but it became seven.

Rhene: Okay. Our requirement actually was just to be on the board and to take part in quarterly meetings.

Frank: 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. So, we started to actually do feedback and give many presentations within these board meetings. Does that about sum it?

Rhene:   Yeah.                                         

Frank: That’s essentially what we were doing over a long period of time. And also, at the end of the large project, we were invited to give a presentation in New Zealand of a personal perspective of what we found over the period of time and that was huge. Nobody’s ever done this before.

Rhene: Actually, we did write a patient perspective paper and did a presentation as well.

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