Gillian is an assistant professor of health policy and management at a university and has been trained in health research methods and economics. Her research focuses on issues in mental health policy and service delivery to support the development of coordinated, person-centred and recovery-oriented care for youth. While working on a national strategy for a mental health organization, Gillian realized how impactful individual voices, whether it be patients, families, or service providers, can be in shaping mental health policy. This experience has helped to shape her approach to engaging users in research and to develop her research program, which focuses on co-designing mental health services with youth, families, and health providers. Gillian’s experience to date with approaches that include co-design has been positive and she feels highly rewarded when she observes the more equal sharing of power amongst participants, and a shift towards all parties working together towards a common goal. Gillian hopes that the co-design of mental health services will become a more permanent approach within healthcare delivery organizations. In the meantime, she recommends that research teams seek help and guidance from other experienced groups when engaging in co-design processes. As well, researchers should be flexible during the co-design process, as things may arise that were not accounted for in the planning that can change the course of the project.
Yeah, it's hard to think of a truly negative experience but there have been difficult experiences and maybe that's what I'll point to. One where youth had discontinued her medication, you know, cold turkey two days before the event and was, you know, having health issues in the middle of it and had to leave and we had to get her to a clinic while trying to run the day for everyone else and make it all go smoothly. That's difficult. Other times when participants are in a lot of distress that can be hard, as I say you're trying to balance everybody's needs. And so, you know, it's not there's one particularly negative experience and we managed all of those situations but I would say it's challenging work, it's definitely challenging work. And at the end of a co-design I can say that I am exhausted [laughs] and it takes several days to recover. But that's also, you know, if meaningful things are happening that's the trade off, right.
Oh I think hugely, particularly youth and families they can think outside the box, right? Everyone else is inside the box. Service providers, they're mostly inside the box and because they are literally working within the system the box being they work for the system. And so it's not that they can't. It's just naturally more difficult. Whereas the youth and family will say things like, you know, the youth will say when we are going off to university, this is transition to adult services, my mom takes me to three, four different universities, we sample the programs, we sit in on a class, we check it out, why can't we do that when it comes to adult mental services? We know we're leaving child services, why can't we go and sample, why are we, you know?
So it's that kind of out of the box thinking that I think youth and families really bring to the work as well as lived experience and, you know, that ability to articulate this is what it feels like for me when this happens, you know. And to understand okay, now I understand why this is happening but still you need to understand what that feels like for me. And I think that's what it brings to the work.
Okay, so what motivated me to, I guess to, get involved in partnership research was my experience when I worked at the Mental Health Commission of Canada. So I was working on the mental health strategy and one of the tasks in developing a strategy for the country was to talk to people across the country. So we held stakeholder consultations, we interfaced with a number of advisory committees, each of which had different lenses on the question of what do we need to do to improve mental health policy in Canada?
And I think that experience was really powerful in making me realize the importance of everyone's voices. So that could be the person with lived experience, the patient, the family member, service providers and capturing the diversity of ages so whether it was youth mental health or senior's mental health or different cultural groups, First Nations and Métis mental health and so on and that looking at workplaces and the legal system, that all of these different dimensions had to be incorporated if we were going to be come up with solutions that worked for people. And so when I came to and started my research program here, I think that experience really shaped my approach to research.
And the other thing that happened in that experience was an exposure to the concept of a recovery orientation. And in mental health that's really about allowing people to recover, which may or may not be the same thing as be cured, but recover a meaningful life. And a big part of that was empowering people to seek out the sets of services that they need and to be very involved in designing services so that that lived experience component was really, really important.
So when I came to [name]as a professor my question was how do we do that in practice? How do we make that real? And one approach that I came across in literature was experienced based co-design and where, you know, people are working together, that's the co-design part from multiple perspectives. In this case, in the work I do, I focus on the youth mental health population, so it's be youth family members or other caregivers chosen by the youth, whoever the youth chooses, and service providers working together that's the co-design piece, but based on experience so their own lived experiences and the experiences from all three groups.
Yeah, personality traits, very open, you know, you have to be open-minded, you have to be a creative thinker and allow for creativity because and we see this with service providers a lot because they're working within the confines of a system is this tendency to say oh, that's not possible or that can't work, right? And it's much more of a well, how do we go with that idea and how do we take that idea forward? And we'll worry about some of those obstacles later; we won't dismiss them because they're important to hear. But it has to be at the right stage of the process. You know, as we're moving towards implementation then those obstacles become more important but not when we're in the brainstorming phase. Another thing I think we need is a lot of humility. The world doesn’t always operate the way we think it is and there's a tendency for researchers to feel like we know it all or we might be closer to knowing a little bit more than other people. And I don’t think that's it at all. If we're really going to be honouring lived experience it's about honouring lived experience and making sure that we recognize that not every lived experience is the same but that it needs to come front and centre as part of this process.
Interviewer: Similar to what I asked earlier, what kind of skills do you think youth and families need to have to be a part of these kinds of partnerships?
One thing I try to find is a bit of a balance in the mix of capacities of youth. I don’t want to have professional consumers if we can call it that, people who are advocates all the time as the only ones in my sample. I want to have youth who are acutely struggling with psychosis right now as long as they're well enough to participate from the clinician's perspective. I want people who are not so long past their experience that it's, you know, kind of been reshaped. But I do want to blend because I do want - you know, some of those people who are acutely struggling aren’t going to be able to stay in throughout because they may have another episode, something may be coming up in their life.
So, it's tricky but I - as I say they need to be well enough and strong enough and that's where the clinicians, getting the right clinicians onboard, so that you can - they become part of the team too in essence, not really, but in essence in terms of selecting people that they feel are well enough to participate but also its fresh enough that they can be really helpful participants. Same with family members, if you get the most powerful advocate who may be fixed in their positions and not able to be open then that's going to be problematic as well. And we've had sometimes where, you know, a real advocacy piece comes through and, you know, we sort of tolerate that but it doesn’t really help in terms with coming up with solutions that everybody can use. So it's tricky, you know, you want people who are strong in their opinions but also open in their opinions.
But then when you get to the co-design event - and I mean constant member checking, constant going back “did we get this right?” is part of it, so that they feel included throughout. It takes a lot of logistical support even to get youth in the room. We always send taxis to bring them here so that there's a defined time and a place and a person, either to bring them here or we go to them, we've tried both approaches. And creating a conducive environment is really critical as well and meeting youth where they're at in the community and so on.