Karen prefers using the term ‘person of lived experience’ for patient partners
Transcript
Patient partner, patient engaged research, the lived experience piece, all those are comfortable for me. I may often speak, saying I’m a person of lived experience, because, my lived experience is significant in so many different areas. And, in one lifetime, it’s incredible how many places you cross. I come from a place saying that I have lived experience of mental health and addiction. But, I have lived experience with cancer at a level that the average person would not have, because of the number of my family members who have died. So, it’s amazing what one person can bring to that table, such a vast area of participation. So, I like, the notion of lived experience, you know. And, we all have lived experience. Even the doctor that’s doing the research, they have lived experience. So, there’s nobody that doesn’t have it. We all come with lived experience. And, so, I like that term. It kind of puts us all on the same playing field at some point.
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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