In a unique situation, Claire had been a partner in research both as a patient and as a researcher
Transcript
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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- Learning From Others – Claire 2
- Learning From Others – ClairePatient experiences of living with the illness can provide relevant context to help guide research projects, says Claire
- Improving Patient Care and Experiences – ClaireClaire’s feedback about nurse-patient interactions was included in orientation modules about symptom management
- Impact on Research – ClaireResearchers can assume a lot about process and priorities, but Claire, a patient-researcher, knows that not all may be feasible from a patient’s perspective.
- Diversity – ClaireClaire feels that researchers should reflect on how they can be more inclusive
- Defining Partnerships – ClairePractices and experiences with partnerships are highly varied, from Claire’s interactions with others involved in partnerships
- Balancing time and commitments – ClaireWithout flexibility, Claire would not have been able to participate
- Relationship building – ClaireResearchers should check-in with patients and ask how they are doing, suggests Claire
- Developing partnerships – ClaireAcademic and hospital environments can be intimidating. Claire advises researchers to engage with patients in places where they feel comfortable
- Path to involvement – ClaireIn a unique situation, Claire had been a partner in research both as a patient and as a researcher