Karen describes an experience where she felt her involvement as a patient partner was tokenistic
Transcript
I think, had very little idea of what they were doing when they invited patients to the table. And, so, I found that experience not to be one, I ended up leaving at some point, because, I felt that they really didn’t take your participation into account. They kind of wanted somebody to do their grunt work, you know, to book their place for their meetings or, take notes or, something. And, I didn’t feel that was appropriate, to ask someone to do your menial work and, that’s the involvement that you have, I don’t think, is acceptable. So, I stayed for a little while. I did bring that up directly to the researcher. And, confronted him on some of the behaviours that I saw. And, he was able to identify that he himself wasn’t really thinking or didn’t have a full idea of what a patient’s role would be. And, I think, that was helpful. He was willing to sort of look a little further and maybe understand the role a bit better. But, that was my experience with him.
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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