Connecting with patients and learning more about one another has been helpful for Dawn
Transcript
So the most challenging is, in a couple of situations I haven’t known the patient or family member going into the group, and so I haven’t pre-established a relationship myself as the Principal Investigator with that person. And so in the one instance the actual patient actually – or it was actually a family member provided an opportunity for me to have a one-on-one meeting with the person as part of the decision-making process. And it was really helpful because I could then understand why that family member really wanted to be part of the process and she could also learn a little bit more about me. So it was very much a one-on-one meeting where we could establish our relationship together.
In the other situation where it didn’t work so well is when I never met the person face-to-face and I never felt very much connection with that person, and the person also had a lot of other extenuating circumstances that detracted from her ability to participate as a patient on the team. And so it isn’t always a positive experience.
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- Impact on Research – DawnIn Dawn’s project, engaging patients highlighted just how different the perspective of the patient can be from that of health professionals.
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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
- Defining partnerships – DawnPatient engagement can evolve into a full partnership, suggests Dawn
- Developing partnerships – DawnDawn’s research team finds patient partners by reaching out to colleagues or support groups