Katie is a qualitative and mixed methods scientist and research chair in patient-centered outcomes at a local hospital. She was trained as a qualitative social scientist (i.e., using stories, discussions, and observations as data) and her interest has always been to learn about the experiences of all users of health care, such as patients, caregivers, families, physicians, and other front line workers. Due to the nature of her qualitative work, she often engaged with patients/caregivers as participants in research projects. Thus, it was a natural move to begin engaging patients/caregivers as partners in research. One area of her work has been focusing on the experience of people who survived a heart attack or were brought back to life when their heart stopped. This field has been primarily driven by patient outcomes and medical procedures, which made Katie realize that she needed patients/caregivers to help her understand how to research their experiences as survivors. She has had a positive experience engaging patients/caregivers to point out research priorities in this area and suggests that they should be involved when researchers are planning a research project. Katie thinks the future of patient/caregiver-researcher partnerships is a bright one with endless possibilities. There will always be research that needs to be done in a research environment, but she believes it is important to continue encouraging researchers to engage with patients/caregivers where possible in health services research.
I think sometimes it’s going to have to be a combination of researchers appreciating the importance of diversity, but also a little bit of a cultural shift. I really don’t like that word, but it does require some education about research and that it’s okay or important for patients and families to get involved in research. I think there are a lot of cultures and age categories that treat healthcare as a very special bubble that they can’t get involved in because, you know, people went to school or a clinician/MDs, you know that kind of thing, are highly regarded and that’s fine. But I don’t know that we do a good job in general of making it accessible. So it’s a combination of understanding where to go to get those populations in your particular field and those populations understanding that we want you, we need you, you can get involved and it won’t affect your care.
I can understand that some people who are new to Canada may not understand, may feel frightened that if they were to express an opinion that it might affect their care in some way or something like that. So we’ve got a long way to go I think to increasing accessibility of research because it’s been held on a pedestal kind of off over here for highly trained individuals for a long time.
Just a real understanding of the value, and that has only come with experience. I don’t think anybody could have probably told me that, but seeing, not just understanding, but actually seeing how they can shape a project for the better. That has definitely changed. I think the ease with which I can now interact with patients and families where I can actually cold call patients and families and say, “Hey, I’m a researcher at the University of Toronto and your name was passed to me” or however, in the ethical way we contact patients and families, but, “You mentioned you might be interested in getting involved. I was wondering if you’d like to meet and have a coffee?” That’s easier for me now than it was before. Even though we all need to work on the lay language piece, I think that’s a bit easier now. I feel like I can explain research better now than I could before. So those are sort of the practical things, but the value of their contribution is really obvious to me now.
I really try hard not to be just ticking the box of having them in the room, but really checking in with them. I don’t do any kind of formal surveys or evaluation of that per se, it’s more just a gut feeling I guess and trying to create a safe space where if they felt something wasn’t going how they assumed it would, then we could talk about that.
Interviewer: Since you brought up the idea about evaluation, have you thought about doing an evaluation about the process?
Yeah, so just recently actually, I was writing a grant and we built in an evaluation to use the tool from McMaster to actually evaluate the engagement process, but that’s the first time I thought about doing it formally. Because I’ve had a pretty positive experience, I guess, I haven’t thought about the need to evaluate. But as I get more engaged in engagement, I do think it’s important to evaluate that and also to contribute to the literature on that because there isn’t much. So yeah, we’ll see how it goes.
I think researchers need open-mindedness, empathy, and humility. A lot of terms that are not easy to train for, but I think they need to genuinely want to do this and not just be doing it to tick the box because patients and families can feel that. They can feel whether it’s genuine or not. When I say open-minded, I think they have to be willing to change direction in the project if necessary or to incorporate other perspectives if necessary. I think that relationship building skills and a lot of soft skills that are tough to train for, but that you kind of develop over time and some of those you either have or you don’t, but you do have to I think truly value the patient’s perspective, patient and family perspective and the contribution that they can make. So once you have that, the rest sort of comes. Certainly you need this as a researcher anyway, but time management skills and the ability to leave yourself enough time to build this in I think is important.
So we actually went through and created them all common Curriculum Vitae (CVs). We didn’t put them as collaborators. We made them official academic co-investigators. It took a lot of time and the common CV is a frustrating thing for most researchers let alone people who don’t have a research CV, but we felt that was a really an important way to make them feel truly valued and the reviewers commented on that. For me that was a win for sure. It was worth it. We ranked first in the competition so it worked and the patients were thrilled.