A master class that Karen attended used great games to address the jargon.
Transcript
And, so, they had games around the jargon. So, when you used too many like, initials and, you didn’t say what it was, you’d have to give a, they’d start off with so many tokens and, you’d have to turn them in, every time you said something without explaining what it was, because, everything’s an acronym, right. Well, people don’t know what those acronyms mean. And, so, people are like, lost what we were talking about. So, they really talked a lot about that, about watching the language and, watching the jargon and, watching the acronyms, because, you speak like, that and, people who are not in your world, don’t know what you are talking about. So, I thought that was kind of cool, as well that they really looked at that notion and, they made it into a game. And, you could catch people. Like, anyone could catch people on “Oh, you just did it.” You know, and, they did it in some of their smaller meetings, as well. And, I just thought that was a great idea. To make people mindful that you may be comfortable with this language, but, you are isolating a whole bunch of people here, who don’t have any idea of what you’re talking about. So, it was kind of cool.
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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