Frank and Rhene

Frank and Rhene

Frank and Rhene are a retired, married couple who love to travel. In their working lives, Frank was an accountant and Rhene worked as a lab technician. Frank has been dealing with health problems for many years and has developed a strong relationship with his doctor. Frank and Rhene were both eager to get involved in a small-scale research project that their provider was involved with as a clinician-researcher. Frank and Rhene were engaged as a patient-caregiver couple in the project, and were later asked to join a large multi-country study as patient/caregiver advisors. Involvement came with a few challenges, including a lack of information and training related to how research works, and how the health care system is structured. They suggest that training be provided to patients/caregivers so that they can helpwithresearch in meaningful ways. Despite these challenges, they enjoyed the experience and made lasting friendships with other patients/caregivers and researchers. They also suggest that patients/caregivers should first ask questions to work through how they might be involved in a research project and consider whether their involvement would be meaningful and impactful on the research and outcomes. 

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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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Frank: Yeah, both the patient and the caregiver. And the heck of it is, you need somebody that has all the problems I do and have experienced the healthcare system and also is articulate enough to talk about it. I was asking one of my doctors, the one that I’m so very fond of, I said “Why was I picked?” She said because frankly, I was the only one standing. She had lots of patients that would qualify to be asked to be included in a research study but at this point in their lives they could not articulate their experiences.

So that’s part of the thing, getting people that can say what’s wrong with the healthcare system and talk about it. We all complain about it but how do we fix it and get involved in that process. So, this is partly why we’re involved in research studies. We are advocates with a small ‘A’.

My experience is that hospital settings, often the patient whether physically or mentally ill at the time can’t really do much and I’ve been in that position myself. So again, the caregiver is the one. It needn’t be a spouse. It can be just somebody that really knows the person. Often that’s the case. It’s a good neighbour, whatever the relationship is. And we all know people like that that actually care what happens and they step forth and speak for the patient. This is why I say the caregiver is a resource that’s just incredible.

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Rhene: I don’t know that we had a really big impact on the health care study.

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.

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Rhene:  Actually, yes. It’s been very interesting. We met –

Frank:  - Interesting.

Rhene:  - some interesting people. Part of the reason why we kept on with it is that you make friends with the people. You’re working with them and get to know them and …

Frank:  They’re fun people. You know, they have a life other than research too, so. And that made it fun for us. We had a good time with them.


 

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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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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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Clip #1

Frank: I think before the group got going our role should have been explained to all the researchers. I think the resentment/tokenism approach that some researchers took would have been mitigated somewhat, if they knew why we were there. I’ve had it said to me "what could you possibly add to a research group". So, I knew then that our role hadn’t been explained to them  or that they just didn’t get it. I'm not sure what the problem was. It wasn’t all of them. It was just a few but it put a damper on our experience.

Clip #2    

 

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.