If researchers came out to the community, Karen suggests, patients might feel more comfortable about getting involved
Transcript
I think you’re going to have some difficulty because, not everybody is going to want to come to a table, right. They’re not going to feel comfortable. Obviously, if you don’t see them out and about, chances are they’re not also going to come into a strange situation. But, I think you could include them if you did a little bit more in the way of survey, you know. Because, people feel a little safer around a survey than they do maybe coming to the table somewhere. But, I think, you’re going to find a lot of people in the world that are not comfortable being around people that are academics and, don’t want to put themselves in that position and, may feel like, if they are invited, they’ll feel stupid. So, I think, that’s a big, you know, and I do see the type of people that show. They tend to be people more comfortable with themselves. They’re less inhibited. They’re more likely to have an opinion and talk. Well, then there’s a whole group of people that aren’t like that and, the chances of getting them to a table are going to be a lot less. They’re not comfortable in that environment.
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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