Patient experiences of living with the illness can provide relevant context to help guide research projects, says Claire
Transcript
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?”
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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