Claire

Claire

Claire is a PhD candidate at the School of Nursing, Faculty of Health Sciences, and the University of Ottawa. Her doctoral work is focused on patient engagement in research, especially engaging frail and/or seriously ill patients as knowledge users. Her other research interests examine how patients and nurses work out the process of identifying problems and self-management in cancer symptom management. Claire is a senior health care leader involved in the starting up, working through, and assessing large-scale programs aimed at improving patient and caregiver outcomes. Claire is also a patient with cancer currently receiving immunotherapy (a type of cancer treatment). She has served as a knowledge user on research projects as a health care administrator and as a patient advisor in the acute treatment phase of her illness.

Researcher

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The flexibility was key. I really don’t think that I could’ve done it without the flexibility. I needed that flexibility in terms of when the meetings were set, the team was really very respectful of how I was feeling and my time, they – I would always be included in terms of setting meeting dates. So, there’d be a number of meeting dates, the choice of meeting dates and times, the option of teleconference, as well, was very helpful. But yeah, flexibility was the absolute key.

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I would have to say that I don’t think there’s usual practice. I think it’s really varied. I think my experience may be different than other people’s experience. In fact, the other thing that I was involved in was an event held by Cancer Care Ontario, looking at quality and safety in cancer care. And, just speaking with some of the other caregivers, it didn’t seem that we all had a uniform experience. 

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I think, you know, sometimes meeting people on their own turf, you know, if you’re trying to engage members, say, of the homeless community, then it’s about, you know, meeting people where they are. As well, because, you know, hospital or university environments can be incredibly intimidating for people, particularly those that have had a poor experience with care.

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I think we have a lot of assumptions as researchers, and certainly, my experience as a patient has challenged some of those assumptions, like, you know, thinking that perhaps, “This is the way we’re going to do it,” and being respectful of, “Well, actually, that may not work from a patient perspective.” And, “Well, is that actually an important question that the patient has?” So, you will never know if you’re setting your own objectives. So, I think having patients setting research priorities is incredibly important.

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I think we have a lot of assumptions as researchers, and certainly, my experience as a patient has challenged some of those assumptions, like, you know, thinking that perhaps, “This is the way we’re going to do it,” and being respectful of, “Well, actually, that may not work from a patient perspective.” And, “Well, is that actually an important question that the patient has?” So, you will never know if you’re setting your own objectives. So, I think having patients setting research priorities is incredibly important. And, in the analysis, you know, as a patient, I think I guided the analysis in the simulated calls project. I guided the analysis in a different way. So, having patients involved in the analysis, I think, is very important.

Interviewer: And just tell me what you mean by simulated calls. I’m not sure, I thought I understood, but maybe I don’t.

Okay, so, listening to a nurse providing symptom management support using symptom practice guides. So, over the phone, so, we were looking at that support and how they had incorporated or not incorporated the practice guidelines into their clinical practice. And the other thing that I really enjoyed doing was developing, or providing, feedback into a video of a nurse and a patient as a – it was a teaching video of a nurse providing symptom management support to a patient. So, being able to provide input into that interaction from a patient perspective. And then, that then went into orientation modules for nurses providing symptom management support.

Interviewer: So, really direct impact on the intervention, actually.

Yes, yeah.
 

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Oh my gosh, yeah, absolutely, you need to engage patients. Like, they bring expertise, they bring, you know, living with illness, living with treatment, you just – you cannot get that out of a textbook. So, it’s seeing somebody, you know, seeing somebody going through that experience of – somebody that’s going to question you, as well, as a researcher to say, “Well, how would patients feel about this?” 

Learning From Others - Claire 2

Just the, you know, I think we have a lot of assumptions as researchers, and certainly, my experience as a patient has challenged some of those assumptions, like, you know, thinking that perhaps, “This is the way we’re going to do it,” and being respectful of, “Well, actually, that may not work from a patient perspective.” And, “Well, is that actually an important question that the patient has?

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Just the, you know, I think we have a lot of assumptions as researchers, and certainly, my experience as a patient has challenged some of those assumptions, like, you know, thinking that perhaps, “This is the way we’re going to do it,” and being respectful of, “Well, actually, that may not work from a patient perspective.” And, “Well, is that actually an important question that the patient has?” So, you will never know if you’re setting your own objectives. So, I think having patients setting research priorities is incredibly important. And, in the analysis, you know, as a patient, I think I guided the analysis in the simulated calls project. I guided the analysis in a different way. So, having patients involved in the analysis, I think, is very important.

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Okay, so, actually, with one research project, which was to do with cancer symptom management, I participated – I actually had three roles, and my first role was as a healthcare administrator and as a decision-maker. So, I’m a senior healthcare leader. And, I was involved in the development of the grant for that study, and provided support to the research team, and then, became one of the knowledge-users on the study and really, it was about implementing the cancer symptom management guides into practice. So, that was my first role. And, I enjoyed that so much that I decided to go back and do my PhD, and then, was involved as a research assistant on that study. So, I was involved in doing the interviews, doing data analysis for another part of the study, and during that time, I was diagnosed with cancer. And, I was quite acutely ill, and had to take some time from work and some time from study. I was very, very ill at the time, and then, went into the acute treatment phase, and at that point, just – yeah, life and illness took over, and – but, a certain point, I was quite bored, I was still quite sick, but I was quite bored.

So, I reached out to my supervisor who was actually leading the cancer symptom management project, and said “Do you have any work for me? I’m not sure what I can do, but, you know, I need to feel useful, I need to feel like I’m doing something, I’m too sick to work, still, but is there anything that you can get me involved in?” And she said “Oh, you know, this is timely, we have – we’re just now doing a simulated […] analysis with the nurses providing symptom management support to patients using the symptom practice guides.” And, she said “Would you be involved in that – would you be happy to be involved in that?” And I said “Absolutely.” I said “I don’t know what I can do at the moment, but just send it my way.” And, I actually, with her, developed the framework for the analysis, and then, began analyzing the cause. And, it was really through my patent lens, so, my academic and my work, my employment experience, went out the window, and it was really from a patient perspective that I was analyzing these calls. And, in part, I was struggling with the same symptoms. So, severe nausea and vomiting, and I was able to really think about myself as the patient receiving this symptom support, and offer a unique perspective to the analysis.

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I would have to say that skills and training are really key, interpersonal skills are particularly important because of the vulnerability that patients feel, and yeah, it’s – you feel very fragile, not all the time, but there are periods where, you know, where I was feeling unwell that I felt quite fragile. So, I think an appreciation of where patients are at. The other thing that I think is really important for teams to understand is the impact – the emotional impact. So, the vulnerability, but there’s also a loss of self-esteem. So, you know, I know in my own circumstances, I felt that my self-esteem had really taken a bashing with my illness and diagnosis. I felt like – I didn’t know who I was anymore. I was always a strong, outspoken woman, and my cancer kind of took some of that away from me.

So, being at team meetings, you know, I think researchers need to be aware that patients may be feeling vulnerable, may be suffering with a loss of self-esteem and really need to, you know, if somebody’s quiet or not contributing, to check-in with them and see, you know, what they’re thinking, what they’re feeling, what input they have, following-up after meetings, I think, is very important, as well. Because, I think, because of that vulnerability, you know, and because of the information that is sometimes discussed in a research environment like, you know, I think of clinical trials, teams where patients are included and, you know, they might be hearing information that’s some unsettling. And so, I think it’s very important for teams to, you know, the team lead to check-in and see how they’re doing.