Speaking clearly and making sure patients feel welcome is a key skill for researchers, says Karen.
Transcript
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? And, how are you going to make sure that when you’re doing the research with a patient, that you keep that in mind throughout. That you’re constantly reminding yourself that maybe that person isn’t going to understand this. Is there another way I can explain it? Because, I don’t believe there’s anything you can’t explain in a really simplistic way. I do this all the time with my clients, because, obviously, some of the items and, terms and, concepts, could be quite complicated, but, it’s very easy to make things simple.
So, like, simplifying things, keeping the patient in mind and, remembering to make them feel welcome, to invite their, don’t let them sit in the room, invite them to contribute. Tell them how they will contribute. What is it exactly are you looking for? What are you asking of this person? Because, if you just sit them, sit at the table, they might not know what to contribute. So, I think, to think about all of that when you bring a patient to the table, what kind of ways are you going to keep them involved and, invite them? And, allow them to feel like, they understand the process, so.
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- Challenging Experiences – Karen
- Challenging Experiences – Karen (2)Karen describes an experience where she felt her involvement as a patient partner was tokenistic
- Supports needed – KarenA master class that Karen attended used great games to address the jargon.
- Diversity – KarenIf researchers came out to the community, Karen suggests, patients might feel more comfortable about getting involved
- Skills for partnership – KarenSpeaking clearly and making sure patients feel welcome is a key skill for researchers, says Karen.
- Relationship building – KarenKaren feels that patient partners should have a forum to share their illness experiences
- Role determination – KarenKaren shares two different experiences about how her involvement was determined
- Defining partnerships – KarenKaren prefers using the term ‘person of lived experience’ for patient partners
- Path to involvement – KarenThrough Karen’s patient advocacy work, she became interested and involved in research