Transcript
The skills that patients need is really the experience in the system, where they can talk about their experience as well as their perspective of the experience of other patients. I think that when we sometimes run into problems is when the patients don’t feel very comfortable to be part of the team, or they have other priorities in their lives, or other issues that are influencing their ability to participate. I think that in the research environment, we tend to be more factual and to the point when we have meetings and so for some patients they might feel like it’s very business-like and so helping them understand how they can participate on the team. Sometimes I need to in meetings open the door for them to check-in with them during a meeting even, to ask if they have suggestions. So I think there’s a number of different elements that we can – or things that we can do as researchers to help make the process easier for us as a research team, and for patients and family members on the team.
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- Supports needed – DawnThe research process, as well as people’s roles and responsibilities, should be explained from the outset. Dawn thinks this would help prepare everyone for engagement.
- Skills for partnership – DawnMaxime, Cathy and Dawn think the most important skill for patients is being able to share their patient experience
- Relationship building – DawnConnecting with patients and learning more about one another has been helpful for Dawn
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- Developing partnerships – DawnDawn’s research team finds patient partners by reaching out to colleagues or support groups