For patients or researchers who have never been part of a research partnership, they may wonder whether they have what it takes, so we asked the people we interviewed to describe what skills they felt were needed for effective research partnerships - both for patients and caregivers, and for researchers. Almost everyone pointed to the need for good communication skills, but they also indicated particular character traits and attitudes as important. Many thought that patients didn’t need to come prepared with skills, aside from “just being a patient,” having experience in the healthcare system, and knowing that their voice matters. A key message for researchers, repeated by many participants, was the importance of openness, receptivity, humility and reflexivity.
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Relational and communication skills
Knowledge and experience
Overall, three types of ‘skills’ were frequently mentioned as important for partnerships:
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Character traits and attitudes, including openness, empathy, receptivity, patience, humility, reflexivity, self-awareness, and recognizing the value of lived experience
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Relational and communication skills, including active listening, ability to express opinions and ask questions, communicating in non-hierarchical way, and building relationships
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Knowledge and experience, including understanding language and process of research (patients), experience working with patients (researchers), experience as a patient in the health care system (patients), and knowing how to communicate with non-researchers (researchers)
Wendy believes that patients have expertise about needs that researchers may be lacking
Interviewer: And similar to my previous question what kind of skills or attributes do you think that community members need to be involved in partnerships?
Katie feels that researchers need to be open-minded, empathetic and humble
I think researchers need open-mindedness, empathy, and humility. A lot of terms that are not easy to train for, but I think they need to genuinely want to do this and not just be doing it to tick the box because patients and families can feel that. They can feel whether it’s genuine or not.
Patients’ lived experience should be front and centre in research, according to Gillian
Gillian speaks about the value of patients who can have strong opinions, while respecting other’s perspective
Interviewer: Similar to what I asked earlier, what kind of skills do you think youth and families need to have to be a part of these kinds of partnerships?
Self-awareness and patience are key skills for researchers, according to Emma
Interviewer: So what kind of skills do you think researchers need to bring to the table then if they're going to be part of the partnerships?
Relational and communication skills
Speaking clearly and making sure patients feel welcome is a key skill for researchers, says Karen.
I think, researchers need to know how to interact with a population who is not part of their scientifically-oriented world. How to speak, you know, in a clear manner to people. How to be able to conclude people, knowing that some of what they're talking about may not be understood. So, how are you going to make that clear to the general public?
For Maureen, it’s important for researchers to dispel myths about patients needing to have a scientific background to participate in research.
So it's really difficult. But I think the most important skill is that you're able to communicate, you have to really be able to communicate with the people who are leading the project and tell them when you're unhappy or when you feel that it's not going in a good way - I think it's really important.
Be raw, says Manda, don’t sugarcoat it when describing your experiences to researchers
Interviewer: Mm-hmm, and on the opposite side of that what kind of skills do you think that caregivers like parents and families need to bring to the table when they come to these partnerships?
Knowledge and experience
Maxime, Cathy and Dawn think the most important skill for patients is being able to share their patient experience
The only skill they need is to be a patient. Essentially every perspective, I feel every perspective as a patient needs to be captured and needs to be respected, and so yeah, it's not really a skill, but being a patient and just wanting to make a change in your community in the way the healthcare system works.