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.
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.
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."
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.
I think you're going to have some difficulty because, not everybody is going to want to come to a table, right. They're not going to feel comfortable. Obviously, if you don't see them out and about, chances are they're not also going to come into a strange situation. But, I think you could include them if you did a little bit more in the way of survey, you know. Because, people feel a little safer around a survey than they do maybe coming to the table somewhere. But, I think, you're going to find a lot of people in the world that are not comfortable being around people that are academics and, don't want to put themselves in that position and, may feel like, if they are invited, they'll feel stupid. So, I think, that's a big, you know, and I do see the type of people that show. They tend to be people more comfortable with themselves. They're less inhibited. They're more likely to have an opinion and talk. Well, then there's a whole group of people that aren't like that and, the chances of getting them to a table are going to be a lot less. They're not comfortable in that environment.
So, I got involved with patient-oriented research, probably about four years ago. I can't even remember how it came by me. I think, I just saw, I do a lot of research on the internet anyway. I'm always looking to see what's out there. And, I think, I just saw them, the young group that was asking for a patient partner.
And, I'd been involved a little bit in patient advocacy work, at different places. And, I thought, "Okay. This could be interesting." I had thought of trying something in a research area. And, so, I became involved with the Primary Healthcare, a research with a program called ARC.
And, it was looking at how difficult it is at times, for people to get from the doctor's office to another sort of resource that he refers them to. And, why that was not happening? Why did people never make it? And, so, they wanted some patient partners to sort of weigh in on that.
And, I thought that was something that I could probably really address, not only from my personal experience, but, because of the work that I do. I certainly see a lot of the barriers that the people I work with deal with, trying to get to these other resources.
And, I think, a lot of times, doctors don't really come up with all the ways that people can't maybe get to a resource. And, probably don't even think of them, you know. So, there's so many things that, I think, the patient can bring to a research project that the researcher, just by their background or, their life experience may not even consider or, think of.
As someone that works with counselling, you know, you become aware of the experiences people have and, how difficult that can be for them. And, how, a lot of people aren't aware of those difficulties. And, so, I thought it was a great project to start with.
So, I became involved in that. And, around the same time, I also, I joined a research, on Suicide Prevention. And, I was kind of really interested in that as well. Certainly, the Mental Health aspect interests me quite a bit. I think, I'm pretty knowledgeable in that area. And, I've had my own personal mental health issues.
And, so, I joined up with that group. It was interesting, because, it was a huge difference between the two projects. I found that the ARC people, the Primary Healthcare people, really had some knowledge about what they were doing and, how they were going to engage with patient partners.
The other thing about personal interest is, sometimes you come to the table and you have some undealt with issues that are around the subject that's being discussed. And, I think, people need to be given time to, at the beginning of that, to express that. If you don't, I think, it sits in the room and it's like this silence in the corner that's causing a problem in open communication. And, I think, it's important that researchers get that. There may be some personal stuff here that people need to just disclose at the beginning and some concerns that they have. And, if they're not heard, if you don't allow them to be heard, I think, people start to feel like "Well, why am I even here?" So, I think, that was another piece they hadn't thought about. That maybe when a person comes to the table, you need to ask them "What brought you here? And, what personal issues are you thinking in the background, as you come to this table? We may or may not have anything to do with that in our research but, we'd like to give you a chance to express that. And, I think, that's really important.
In this case, I had gone to a number of meetings and I had never got a sense of where this was going? What a tall part I would be playing. It just never got there. Like, it seems like, he was discussing his project and, stuff and, you were just sort of left sitting at the table. I kept thinking "Where is the point where you are inviting me to be part of this?" Whereas, in the first instance I went and, right away it was explained that I was part of this process. And, that we were going to, just what the issue was that they were looking at and, would be wanting to brainstorm around this issue to see if we could come up with a solution. And, they wanted to hear from me on, you know, how I could see that problem. Could I think of solutions? Or, what problems would I think that they, that a person would encounter?
So, right from the minute I stepped into the room, that opportunity was offered, you know. And, it was a learning process for me because I didn't know much about what they wanted. So, it took me a little while, but they would put us in little groups for discussion. So, you were always a patient partner, a clinician, like, a doctor and, somebody on policy or, research, altogether in little groups. So, we would discuss these things that they were, questions they had put up there. And, then, we'd all come back and sort of report on that. And, it was quite lovely. Sometimes I reported back to the group and, sometimes, somebody else did. So, on that level too, if you were comfortable doing the report back to the group, they invited you to do that.
I think, researchers need to know how to interact with a population who is not part of their scientifically-oriented world. How to speak, you know, in a clear manner to people. How to be able to conclude people, knowing that some of what they're talking about may not be understood. So, how are you going to make that clear to the general public? And, how are you going to make sure that when you're doing the research with a patient, that you keep that in mind throughout. That you're constantly reminding yourself that maybe that person isn't going to understand this. Is there another way I can explain it? Because, I don't believe there's anything you can't explain in a really simplistic way. I do this all the time with my clients, because, obviously, some of the items and, terms and, concepts, could be quite complicated, but, it's very easy to make things simple.
So, like, simplifying things, keeping the patient in mind and, remembering to make them feel welcome, to invite their, don't let them sit in the room, invite them to contribute. Tell them how they will contribute. What is it exactly are you looking for? What are you asking of this person? Because, if you just sit them, sit at the table, they might not know what to contribute. So, I think, to think about all of that when you bring a patient to the table, what kind of ways are you going to keep them involved and, invite them? And, allow them to feel like, they understand the process, so.
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.