Karen is a Registered Psychotherapist who helps to support individuals who use drugs or alcohol, and their families. She first became involved as a patient partner after finding an advertisement online from a research group seeking patient partners. Based on Karen’s advocacy work and her own lived experiences, she felt that partnering in research would be interesting and that she had a lot to offer to the research team. Karen has now been a patient partner on various projects and she has had both meaningful and challenging experiences. Karen has most enjoyed her experience as a patient partner when researchers have treated her with respect, been considerate of her time, treated her as an equal member of the research team, and recognized her contributions to the project (e.g., co-author on publications). She strongly believes that patients’ voices are an important factor in moving research forward that improves the health care system, particularly for those suffering from addiction, and she hopes that researchers continue to be inspired to include patient partners on projects. She believes that researchers need to think independently, differently from others, about how they can reach patients that are not often heard. She also hopes to also continue being a patient partner herself and as an interest in contributing to mental health initiatives.
- 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