Transcript
And, then, the other thing this group did was, they started saying they wanted us to write the notes for their meeting. Well, that’s not my job. That’s your job. You know, unless you’re hiring me, as your secretary, I don’t see that my volunteer in this, would have anything to do with that. And, then, the other thing is they wanted us to book the menu for them, “Sorry, again, that is not my job. So, what did you, you know, some people are ticking a box. They know that they get funding, if they say they have a patient partner. So, they tick the box and, then, they have no idea and they don’t really want to invite you to give any comments because, they’ve got all of their own ideas in mind. And, they’re not interested in asking you for anything, but, they’re going to tick the box that you’re there. But, these guys even went further than that. They actually expected us to do the work for them, like, the menial work. “Sorry, I don’t, I work full-time. I don’t need another job, being your labourer.”
More from: Karen
More content
- 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