Moving Forward, from Triage and Task Lists, Together.
Episode 5, featuring Karine Toupin-April and Laurie Proulx.
Meet Our Guests
Dr. Karine Toupin-April is trained in occupational therapy and is an associate professor at the University of Ottawa and affiliate scientist at the Children’s Hospital of Eastern Ontario Research Institute and the Institut du savoir Montfort. She has research expertise in chronic disease management and shared decision making. Her work has included research in pediatric and adult rheumatology, with experience in developing clinical practice guidelines, patient decision support interventions and self-management tools.
Laurie Proulx has lived with Juvenile Rheumatoid Arthritis since she was 14 years old and the disease impacted all aspects of life, like school, work, pregnancy and parenting. Her lived experiences led to her involvement in the Canadian Arthritis Patient Alliance (CAPA), a grass-roots patient driven and managed organization. She currently works part-time for CAPA as managing director. She works as a consultant where her work focuses on patient and community engagement, knowledge translation, and health and social policy analysis.
Resources
Contact the hosts: Anna and Bryn
Bryn Robinson
It’s not enough to recruit patient partners to the study - you have to build a relationship with them. Part of this work requires an awareness and appreciation of the merits of patient engagement, but participants in our study still felt that there are character and relationship traits that are more conducive to successful engagements.
But can you teach character?
Anna Chudyk
Those are really important points Bryn, and definitely echoed by our study findings.
Specifically, our workshop participants stated that while there is growing awareness and understanding that relationships and engagement activities are at the heart of patient engagement in research, many research teams still do not give ample consideration to both.
In case you’re wondering, by relational aspects we mean things like emotional intelligence, interpersonal and soft skills, and how you show mutual respect. Basically, relational aspects of engagement refer to all the interpersonal people skills and actions that nurture positive working relationships.
And in terms of the activity-related side of engagement, we’re talking about the more traditional, research process side. So things like patient partners and academic researchers working together to establish clear and mutual understandings of everyone’s roles, responsibilities, and the activities through which patient partners will engage in research, and also establishing accountability mechanisms for how decisions are made within the study. Other important activity-related considerations also include identifying the impacts that everyone would like to have on and through the research, to ensure that everyone is working towards mutual research goals.
So, how can we do better? Well, according to our study, in a preferred future state of patient engagement in research, it is standard practice for research teams to carefully consider and address both the relational and activity-related aspects of the engagement process. An important step towards this is universal awareness and understanding of what these aspects are.
Other identified supporting factors include engaging patient partners early, such as during the priority setting and idea generation stages of research, and throughout the entire research cycle, so that patients partners have an opportunity to meaningfully impact the research in its entirety.
Another supporting factor is creating designated engagement support person roles (commonly referred to as patient engagement liaisons). These individuals are the point person for patient partners, responsible for ensuring the integrity of the engagement process, including that patient partners are supported in engaging to their full potential and interests.
Clearly, there’s a lot to consider when engaging patients and caregivers in research, beyond just the activities you will use to engage them in the research process.
So we have on with us two guests today to share their experiences building a patient-oriented research program, whose foundation is built upon meaningful relationships with patient partners, and that also includes a patient partner in a knowledge broker and patient liaison role.
Before I turn it over to you, Laurie Proulx and Dr. Karine Toupin-April, to introduce yourselves to our listeners, I’d also like to take a moment to congratulate you your Choices Lab’s recent Inclusive Research Award from the Institute of Musculoskeletal Health and Arthritis, both for patient engagement and team science. That’s awesome!
Laurie Proulx
My name is Laurie Proulx. I've been working as a patient partner actually for quite some time, probably before we even knew about the Strategy for Patient Oriented Research. I first became involved through my involvement with the Canadian Arthritis Network, which is actually where Karine and I both met, when she was a trainee, and I was a patient partner and I was new to this world.
It was my first step into working with the arthritis community and the world of patient partners. I happened to connect through different people who are already quite active in that space. [I] ended up at a conference and was just actually quite surprised about how I could be involved, because, really, I have a business degree as my background. I worked in human resources for over 15 years. And so I really didn't know anything about it. I didn't even think about bringing my lived experience with arthritis.
I was diagnosed with juvenile idiopathic arthritis when I was 14. So I've been living with this disease for more than 30 years at this point, and working as a patient partner for close to 20, to be honest… pretty long. So anyways, that's just a little bit of my [history].
Karine Toupin-April
So I met Laurie more than 15 years ago at a conference. We were part of the Canadian Arthritis Network, which was an amazing network funded by CIHR — the Canadian Institutes of Health Research. It was one of the Networks of Excellence, and the goal was that there were conferences, and you would have patient partners, as well as clinicians and researchers - researchers from basic science as well as clinical research - and you would have all these people interact and each of these different people would present, which was amazing.
I was doing my master's degree at the time when I was part of the Canadian Arthritis Network, and that's how I really met patients, like who really had a big, big influence on our training. So for me, training and research was like, “You can't do it without patient partners.” It was a really good set up for everything to come.
I'm a professor at the University of Ottawa. I'm in the School of Rehabilitation Sciences, so I teach students in occupational therapy, students in physiotherapy, students in the PhD in Rehabilitation Sciences, and I also teach medical students as well. I studied as an occupational therapist, so I did a bachelor's degree, and then I went into research, and I did a PhD in public health and epidemiology.
I'm also a patient with asthma. I started with asthma when I was six months old. So I always lived my life as a patient going to the hospital every few months, and going on several different drugs and trying all these different types of complimentary health approaches for my asthma. I also was a patient, I would say, very early on.
And so I think we had a bond very quickly, Laurie and I, when we met, because I think we both felt that… [I was] a patient as well, so I wasn't there just as a trainee.
So yeah, it's amazing to think that we met so long ago. We kept in touch over the years and we started working on different projects together. And at the start, Laurie, we would go for coffee. And I remember asking you - at some point I was doing my PhD and my postdoc and I was like, “Hey, can we go get coffee?”, and I would ask you questions about, “Hey, do you think this is the way to go for this project?”
We had a project on complimentary and alternative approaches - like complimentary and alternative medicine - and I remember asking Laurie all these questions because I was like, “I don't know what patients think of this.” So that was the first step towards this discussion. And now, many years later, it amounted to Laurie having a very special role on the team, which we'll discuss a bit more soon.
Laurie
I think Karine was actually one of the first people I met at that conference. Because I remember just feeling like a bit of a fish out of water because I was like, “What are all these posters doing up on the wall?” When I go to conferences or meetings, they were much more focused in the world of science, and the way research was presented was just really, really different for me.
I don't know- I'm not sure if Karine remembers, but she was one of the first people. I remember walking through these posters and I have a very clear memory of it, just because I felt so out of place and like, “Am I supposed to be looking at these posters?” And Karine actually asked me if I had any questions and I was, ”Well, I don't know. Tell me what your posters about.“ I think that's where it's all begun and we stayed in touch and over the years, too. I'm quite involved, too, with a patient organization, and it's important that, with this Canadian Arthritis Network, they had a whole patient perspective that embedded every aspect of how the network operated.
They had what they called a “Consumer Advisory Council”, and a lot of members of CAPA today, or the Canadian Arthritis Patient Alliance, were actually members of the Consumer Advisory Council. So Linda Wilhelm, Janet Gunderson, there was a number of them. And you know, Dawn Richards as well, she started getting involved there.
They came over and part of the legacy, frankly, of taking that consumer component or that patient component. I know the terminology varies depending…So many in our community are quite involved in various parts of arthritis research. And the impact of the disease is- we often just see it as affecting the joints, but it's much bigger than that, affecting cardiovascular health and all sorts of things. So anyways, all that being said, we've felt a responsibility to train people.
I guess when I think back to it, I think back to my first experiences at the conference and although I feel very well supported, it was just such a different culture and a different environment for me. So to help people through that, so they can get some more formal support as they embark on projects and we actually match people, as well, to projects. We get approached a lot to be involved as patient partners and research you know, skirting at the grant phase and/or sometimes later, it really varies.
Anyways, I just thought I'd add that on in terms of my own, how I felt.
Anna
You raise a really important point, and it really does tie into the relational aspect. I know that I, for myself sometimes as a researcher, I get so hyper-focused on the output that I'm working on, that it's really easy to forget about the relational components and really the favorite things that make the research process so great.
And that's something for me personally as well, that engagement has really brought into my life and that I really appreciate. It's that relational aspect of things. I can see that you and Karine have a very deep bond. It's so nice to see too that it spanned so many years. And our original third co-host, Roger Stoddard, who's no longer with us, but I had that with him as well.
And it was great because it starts off as a research relationship, but then really it transcends into so much more. That's one of the many fulfilling things I find about patient engagement and research, because I don't know what the magic sauce is, but I find that entering in those research partnerships, there seems to be a lot more space for the creation of those deep bonds.
Karine
I think it's huge, right? I think it's an aspect. We mentioned also- we talked about Laurie before, but I think it's really hard, like we said, right?
The relationship is so important. You can't expect to just “do” patient engagement; have someone just show up for meetings, show up for calls, do what you ask them to do, and that's it. That's not building a relationship.
That won't- and I'm not sure, Laurie, but I think you mentioned sometimes - not all patient partners always feel included in research teams. I find that not building a relationship like that, just being, “You do this, you do that”, it's a bit like a job you don't want to have, right?
It's a bit like a job, where you have no friends at work and you don't discuss anything personal, anything ever. You don't know people, you don't build relationships, right? And why would you even stay in a team like that? Because I know this is just on top of your life.
Laurie
Yeah. As a patient partner, I've evolved, but this has taken over a decade plus of finding a role, and not everyone will even get there, right? I think the role I play with the team is, I think, helping with that relational aspect.
When I reflect back on all the experiences I've had as a patient partner, I think of the way I'd like to be treated. And I try to always consider that I want all the right supports. I don't want to be fighting with people over scheduling something. So it's just, “Whatever time the team wants, I'll do it, so long as I can find something”, recognizing that it's not the number one priority in their life, because a lot of the broader team are in school, and working, and they also live with a really serious chronic illness that's affecting their ability to participate in all those things. I know, because I went through a lot of those struggles firsthand myself.
So I'm trying to place myself back 20 years, to the way life was for me at that point, and trying to imagine the different barriers that people may have, and to want them to feel like part of that team, and that they're included, and that it's different, so that they wanna stay. Because I think- maybe it's 'cause of my HR background too, and not that I'm a big fan of the “human resources” word- it's just part of feeling included, and being part of a team. You don't really want to participate- as Karine said, there's a lot of different opportunities out there now, especially, so it's retaining people in a way is important. Why would you want to be involved in something if you're not getting something out of it? We talk about mutual benefits and it absolutely needs to be there.
Why would I do anything in life without some sort of… you could be altruistic and all that, but to keep up - especially myself, I just thinking over the last 15 years - to keep it up over that period of time, it absolutely needs to be benefits and there's nothing wrong with stating that and knowing that and realizing that. I think that's life, right?
And benefits are different benefits. It could be that you're compensated for your work. It could be that you're acknowledged on the work, on the papers, that you recognize your work is recognized and that you also build relationships that are meaningful, too. All of these are benefits. Or that you see your ideas carry forward in some way. That you see that your input meant something and is valued in some way. That you are respected and feel part of the team.
I suppose that's why this team science approach we've been working with- we have our own meetings with the broader group of patient partners, but we also bring them into the larger meetings, and then debrief on that afterwards.
We're always trying to find ways to better incorporate their perspectives, so they're front and center. So we've - Karine, you can maybe explain, too - we found ways over time to better focus on that and to accentuate, I guess, that.
Even in terms of the consensus meetings that we did recently. It was looking at, “This is what patient partners said, and this is what research or healthcare professionals said, and this is what researchers said”, so you're analyzing and you're trying to think it through in different parts.
Those are just a couple examples, but you're just trying to be more thoughtful and more actively include all those different perspectives.
Bryn
I wonder in terms of - and maybe this is leaning back on the team science award that you've received, and also your HR background and just your experience - clearly, the two of you are friends, and it's great to to see when those projects evolve into that.
When you're building a team of patient partners and researchers together, are there important relational aspects to consider? Is it like any other team, if you were approaching this from a pure HR lens?
You know, there's often- and I know you just said you don't subscribe into those sort of personality kinds of things - but I'm wondering if there is anything over your time working together, is there something [or] things that seem to stand out that led to more of a success?
Karine
I'll say a few things. I don't know HR so much, but I'm thinking that… people who have empathy and are able to put themselves in the shoes of others, and people who are trying to understand and ask questions and listen to patient partners and to all the members of their team, really. I think that's something you must have.
If you don't have empathy, and you're not able to ask questions and be able to receive these answers- if, for example, I asked the team, like, “Hey guys, are we doing this well or not?” If I'm not ready to acknowledge that maybe there's some things to improve in their patient engagement, or in our training we give, or in the way we conduct things- if I'm not ready to get that feedback, so that we can work together on it, then it's never going to work.
I find these are the things that I would see as really important. And I think Laurie and I, we get along well, too. We're similar personalities, too. So we're very much- our personalities match as well. So I think you need to find people that you can work with well. If there was someone that was a bit too- they want to do this and this is their own thing, and they're not really open-minded- it would be very difficult for me to work with a patient partner like that.
I don't know, Laurie, what do you think? You probably have a better answer.
Laurie
No, and I think just perhaps working in HR, and having to work with people a lot has made it perhaps more accessible for me to step into a role like this. Realizing that there's so many different truths, and there's so many different perspectives that are- one perspective isn't right and one perspective isn't wrong, that we can reconcile all these different things together. I've worked in managing employee conflicts over time. I've worked with union management relations over time, so maybe all of that?
I've also taken a concept that we talk about a little more in terms of recognizing what power you have, right? Because that occurs in typical human resources, “employee employer” relationships as well. It's very, very central and it's ever present, much like it is here.
I've been through a lot of these same challenges myself. Understanding the powerlessness, it's just even more accentuated, frankly, in the world of patient engagement, because the loss of choice, the loss of voice that happens in healthcare encounters, that you've really got to be cognizant of regularly.
And maybe it's because I've walked through- I mean, Karine as well, she mentioned her experience with asthma - but I do think that has probably made a difference; it has probably made her more empathetic.
I know you don't like it when I have to say really nice things about [you in] public, but I think that helps, right? It helps, and it's taking a very bad set of experiences, and just being mindful of that, and knowing that can affect how you interact with patient partners. I noticed those things.
Karine
A skill you can own, or is it something that you just have? I mean, it's a bit of both, right? I think you can not have it and be amazing.
It's funny, because from what I understand - I mean, I haven't grown up in the health research world. I've seen enough just through my different interactions, but it's not necessarily something that's - as healthcare professionals, it's taught right in terms of your individual interactions, but not necessarily as much in terms of recognizing the power you have because of your position. Because it's your research at the end of the day. The patient's name is just there as maybe a collaborator or, it's changing. And we're seeing examples, of course, where the engagement is perhaps getting to a level of true empowerment and decision making at times.
But I think it's possible that someone can learn these things and just become very self-aware of what power they have, and just how difficult it can be to talk about some of these experiences, and bring that to a project or to research in some way.
There's a lot of translation that happens, when you come to think of it, from the individual experience and then how that's relevant to the research being done. I think it can definitely- I mean, you need the basic skills maybe, and you also develop these skills.
I think also one of the things that I learned about recently is we have a tendency sometimes to- and maybe it's worse when we use Zoom- we have a lot of meetings back to back, and it's all online. It's very easy to just say like, “Okay, what's our goal?” We're very goal oriented. The whole point is, “Today, we need to make decisions on these ten things.” We don't have enough time in a meeting to really decide on all these points. It's not really realistic.
And in the world of research, we have the tendency to do that; “the end justifies the means”. However, our goal is to make decisions on all these things for a grant, for example, and we're not actually looking at the process of how we do this. It's very easy if you have that approach of, “We have to make decisions about all these things”, to then not spend time talking with patient partners beforehand, not take time to talk about your lives.
Cut all the chitchat, you cut all the things that build relationships.
You can have all these Zoom calls of 55 minutes each, because you need a bathroom break between. Okay, you're going to achieve your research goals or whatever. It's a bit like if you're in the emergency room, your goal is to save the person to do all these tasks, but sometimes you put aside all the things that are a bit more human because of that. So I find we have to be careful and it's very easy.
And we realize that, sometimes, on calls, “Ooh, some things maybe we didn't take into account what the patient partner said”, or, “Maybe that person dismissed a bit that thing”. It was done because, “Oh no, we need to go fast and we need to go to this next item”, but I don't think it's worth it. I think in patient engagement you can't really do that. Because what if you dismiss something and then the person's like, “Wait a second. Am I even valued in the team?” And then they want to leave the team.
I think researchers and clinicians, we're very in a mode of task-oriented, but it's a bit of a problem. It should be a bit more also relationship-oriented, right?
Laurie
And I think it's worse with Zoom. Because before, we would've done a meeting of an hour and a half, and we would've had time to talk before, and time to talk after. But now, we don't really- we cut these things.
I know it's definitely challenging, but I do think like it is- I think there's some good examples, too, where I, or at least some of the really good examples that I'd like to think from our work in particular, because we spent some time getting to know people because, honestly, I feel like most of the time, I'm an open book.
Even in my healthcare appointments, I'll tell them the story. I was just at an appointment earlier this week - diagnosed at 14, I took this, I took that - I've gotten to the point, I guess, where I’m pretty comfortable in relaying all that, and I always clearly say… it's like, everyone shares what they want to share. That's what I decide to share.
And no pressure whatsoever on anyone else, because I'm that one extreme of- there's a coming to terms with, almost like arthritis is part of my identity as a person, and I don't see that as a bad thing. It just means that I've reimagined who I am and I'm happy to include that part of myself in, you know, because I had to do that a lot over the last 30 years. Like imagining this is what I saw from life and well, it took me somewhere else and I've met some pretty awesome people along the way, and that's okay, because that's part of life.
But anyways, all that being said… just, I think having spent some time like that, like even there's been some benefits even outside the research process. So I do a lot of work with Natasha Trehan, who is in our group and she's the founder of a youth-led organization, a not-for-profit, called Take a Pain Check Foundation, and so it led to us collaborating outside the research space. We have a project that we launched, starting with a survey of youth. Honestly, supporting youth is always, it was just a topic close to my heart, because I just know personally how much I struggled. As a teenager, as a young adult with a chronic illness, when you're just so different from your peers, that I feel like there's just so many things that don't address that journey.
So anyways, topic very close to my heart. We've done a project called Make Rheum for Youth (like rheum as in rheumatology). Or even with Karine- we, and Natasha, presented with us too, at the Canadian Rheumatology Association on shared decision making. And Natasha presented and developed the infographics. It transcends - I guess it's a knowledge translation activity - but I just think it's led to so much more even within the world of research.
Anna Chudyk
So I'd like to jump in just to comment on one thing that you guys brought up that I found in my own research experience, and then to also ask you about another topic in a bit more depth.
But I've also found that myself, that, you know, I'm also very research process oriented and I can tell totally when I get in that mindset as well. Because, like you so described Karine, I have my tasks, I know when I need to get through them. And it's like, I'm hypervigilant, because I feel as though every minute of my life is basically spoken for. So these points need to be checked.
I think within that, though, something that I've noticed is that the process, the outcomes that occur when I'm in that mindset, I would say are definitely of a lot lower quality than what they would be if perhaps I was a little more flexible with my timeline and also created more space for others.
Because I think another one of the beauties of patient engagement in research is that space for synergy. So is the project all about you and your own ideas and your own timelines, or are you truly meaningfully engaging with others? And how do you engage with others? It's through conversations. It's through creating the space to co-create together. And that can only happen if your timelines are flexible because how can you ask someone to express themselves and then just say, “No, just kidding, like five minutes, 'cause we've got these four other points. So I am interested in what you have to say. But only if it's contained within this short amount of time.”
So I think that's something else where, if people build in that flexibility, and yeah, sometimes it may feel scary 'cause you may think that you're falling off your timeline, but then just trusting and seeing what results. And I truly believe that anyone who creates that space, they will see the benefits and really try to be more flexible with their time.
Something else that I've been pondering a lot myself, and we've been hearing from our other guests about, as well, is the whole idea about power dynamics. And really, I agree, it's that importance of researchers and patient partners, everybody realizing what their power is in a situation and what kinds of teams they're trying to be a part of and to create.
I know something else that I was personally really excited to hear about was your knowledge broker and patient liaison role, Laurie. If you could maybe share more about that and maybe bigger picture as well as what you see about the patient partner liaison role and how that could really help people disrupt the power dynamics that exist in research teams?
Because that's something I've been trying to push people towards, or gently nudge is, especially when you're writing grants to budget for that because it's an integral part of the engagement process, in my opinion.
Laurie
I think the role evolved, like relationships, right? It just evolved over time. I forget, I guess it was 2018 or some time around there that we were- Karine had asked me if I'd help her more in terms of facilitating the engagement, supporting the patient partners, I guess because I've worked as a patient partner for such a long time, including on her projects.
I do things like coordinate the meeting times, I at least develop an initial draft of what a terms of reference might look like, facilitate some of the conversations of the meeting. I do create agendas. So there is always some time, but I try to involve the whole group in creating the agenda. I identify some of the different strategies we could use to share the research with patients in public; developing the website, in English and in French by the way; developing plain language summaries, identifying opportunities like that. Developing the abstracts with them, co-presenting.
'Cause I think it's important.
I was going to say, “I could have power too, in this process.” And I don't want to be a gatekeeper. Reflecting on my experience as a young adult, even in a healthcare setting, and I always felt taken less seriously. As a teenager as you know, everything was deferred to my parents. A lot of the time, even at that age, I was always pretty stubborn and persevered- But anyways, I just want to recognize that I don't want to be another gatekeeper to something else. I want to defer to them and what's important, but I want to support them at the same time. Might be little things, like doing a private message chat, or maybe texting them during meetings, just to see how they're doing. I'm not trying to, but I also want to help the group have a voice and support them in having a voice.
So that's me, just how it's evolved over time. We've just tried to figure things out. We've had some plans to do things, which I think we've managed to accomplish a lot of what we had in our original plan over the last, I guess, five years? My goodness. Time flies. But COVID too sort of changed that, but I think it's…
Karine
But Laurie, I think the thing is, I think having you as a knowledge broker, there's a few things that we wouldn't have realized that we're not doing optimally if you weren't, if you hadn't been a knowledge broker, right?
So I know that my power- the power dynamic is probably a bit more between patient partners in general and me, and the rest of the team as well. And Laurie and I have worked for a long time, and so I felt like, “If there's something wrong, if there's something we should change, Laurie's gonna tell me.” I always felt that. What if other people say we should do things differently, but they don't feel that they can necessarily tell me directly, or if there's something with the bigger group that they don't feel at ease, or there's some things, and I felt that there's a few times that Laurie, you told me, “Hey, Karine, maybe we should do this and that?”
So that feedback was really important. And I think it came from you being a knowledge broker too. It came from you being the liaison. They would feel maybe that they can share more with you, and then we would discuss it together.
So I guess it's just to make sure that, I know there's a power dynamic. I know sometimes as researchers, we're often like very task-oriented as you mentioned. I think that sometimes I need… Laurie is an open door for all the patient partners, right? To tell you, “Hey Laurie, this is what I'm thinking, but maybe I don't feel comfortable to share it with the other team members on a big team meeting. And maybe I don't feel comfortable to say it to Karine.”
So I felt, for me, I felt it was something that was needed. And it's not because I don't listen to people. But I know there's always that power dynamic, always like it is there.
Laurie
Yeah. I think it's more, or just to add: it's like, when I talk with other people with arthritis, it's, I don't know, there's something different about it. You don't have to explain yourself and the way life is as much. It's like, “Yeah, I get it.”
Like immuno-compromised, COVID, wearing masks and navigating a world that doesn't want to accommodate you. I've experienced all of these things and I feel pretty privileged, 'cause I'm university educated and I just want to… I come from a family that supported me through chronic illness. That doesn't happen to everybody either. And realizing the differences.
But I think we see that with peer support, and I don't know if peer support actually gets the value, or the healthcare system realizes the value that that can play.
Because even myself, I never really met another person with arthritis until I started getting involved with CAPA. I've heard that even from people recently; the internet hasn't solved that problem. As much as we think that people are more connected -well, I wonder if it's, because to your point, healthcare isn't relationship-focused, so they don't see the value of peer support, or the patient experience, because they're not, it's focused on transactions and administration, and not like these things.
Because again, it comes back to time, at least from my own point of view. I mean, I don't know if that's your experience, but you're so right. They don't value the peer support and what one can get from that.
I think that's where a lot of patient organizations like Take a Pain Check - and, you know, Natasha's done such a wonderful job of involving a much bigger group. She even involved Naomi, who's also on the team in a CBC documentary that she did that she managed to apply for, and they did the filming. It's led to other things, which I should probably also provide the link to that.
I was just thinking, as we were talking in terms of showcasing, 'cause they talk about, and I get it, that's probably why I've stayed as involved as I have is, because, you know, a lot of these transactional sort of healthcare encounters render you powerless. Patients can't really do a lot at the end of the day. I can't write a prescription. As much as I'd like to be able to write my own prescriptions and I want to sometimes and that's why we do research on shared decision making, right?
We did the whole infographic that you guys did with Natasha Trehan. We were telling clinicians at the Canadian Rheumatology Association meeting, “We want shared decision making”. This is what it needs and it needs to have relationship- as you mentioned, not just a transaction of, “This is the medication you can take now, take it please. And then we'll meet next time.” Like, yes, I know. Or make a big switch to your medications, and it just doesn't consider the whole impact on the person and their lives and the lives of their family, and/or school. I've seen people delay making any big medication changes, because of life commitments, and they don't want to rock the boat, and I don't blame them. You know, that's a valid concern.
Anna
Something that I've really appreciated from what you've reflected here, as well, is thinking about the importance of not only a patient engagement liaison, but perhaps a patient engagement liaison that's a peer. So I appreciate you flushing that out.
Something else that I've heard before and I was wondering your thoughts as well, is I've had people share with me frustration sometimes when there was a patient liaison, but that person didn't really necessarily have any sort of decision making power within the broader research team. So then I had people share experiences with me where the patients themselves, the patient partners, felt disempowered and then they said that this patient engagement liaison was appointed. But then the patient engagement liaison as well had no real true connection to the research team or to really influence anything that was being done. And that for me was another thing that I've started to ponder about as I share with people the importance of patient engagement liaisons.
So ideally, every research team member shares decision making power, but if for whatever reason that isn't there, then the solution is not to appoint a patient engagement liaison that also has no power. Then it’s time to do a timeout and rethink the whole entire process. But what do you think about that?
Laurie
Well, it sounds like a bit of tokenism in action, right? They haven't put the time necessarily, or they haven't opened the door. People will have to go into it with the mindset that they're gonna change their mind. They're actually open to having their mind change based on what they hear, as opposed to plowing through things. I think there needs to be that sort of recognition underneath that just appointing someone to a role or appointing someone like I.
I always find, this isn't about me, right? This is not about my experience as a patient partner, though. I can use that to relate to people, or to help support them in one direction or another to validate how people feel, so you also need to make sure that you're preparing them and you're putting people in the role that they can effectively execute it as well. And I think we've just learned as we've gone along. I don't know, it's a bit of an experiment in a way, because I don't think we've necessarily seen- we've seen sometimes, or somebody like Dawn Richards, has embraced both aspects of this. I think we might need to reconcile these sort of different roles.
It's interesting, because I think a lot of researchers too, they don't - from what I've heard - they don't always know how to embrace different aspects of their lives and bring it to the work. There can be concern right about potential bias, I guess, or can they do research on an area, you know? But to me, that just brings you so much closer to things that it can only be good. Can't it?
Unless I'm really missing some element there. I don't know. Karine, if you have any other thoughts?
Karine
I guess one of the thing is, it's very easy to appoint to say, “We're gonna have patient partners and we're gonna have a patient partner liaison.” Then the thing is, as soon as that patient liaison brings something that the research team doesn't agree with, that the researcher doesn't agree with, then they say, “Well, too bad for you, because the researcher wins.” What's the point of that?
I felt a few times in our research we had sometimes where some patient partners wanted certain things. For example, some questionnaires; we wanted to add questionnaires about mental health and fatigue, a few questions like that, and we had to actually look at it together because I was like, “Oh, but maybe that's gonna be too much for patients to answer all of this.” So we had to gather to find a good middle ground compromise. Because the thing is, that's the reality. If the patient partners say, “We want to add mental health, we want to assess this in mental health”, and then we don't do it, then what does it say about our process of getting feedback and listening?
I think what we decided is, we added certain things; we found outcome measures that were not too cumbersome, and then we added them. I think the goal is that the patient partners really brought this, which it wasn't on the radar as researchers, but in the end, we made a change. But if you have no power as a patient partner liaison to make any changes and nobody acts upon it, then it's only tokenism, and it's only to check a box for the grant you're applying for. So I find quite a few times we made changes, and all the aspects of mental health, for example, came right when we developed a web application for pain.
In the end, we're adding now mental health symptoms and everything because patient partners said it was really important. It really came from the feedback from patient partners.
Laurie
And just because it's been a little while since we touched base Karine, but in the project I'm doing with Natasha now, the Make Rheum for Youth, mental health is the top issue. It's that needs the most support, that's affecting people's day-to-day lives. So it's consistent at least with our survey of upwards of 70 people within various forms of juvenile arthritis, up to the age of 30.
Anyways, it is a big issue, and I think you just need to be open to working through it and committed to working through the process. Even if you don't agree, and creating an environment where we still all respect each other and can relate to each other. Even if we don't want... that sort of addresses everyone's needs at the end of the day.
Bryn
You mentioned that you were a peer, right, to the others, to the other patient partners. I think that's one thing too; you said that you know each other, you're able to relate to each other because you have some of the similar or different experiences. But like, me not living with juvenile arthritis, I don't know these things. I really need you guys to help me figure out what we should have, right? So I think we figuring out together, and that's really the thing to keep in mind for folks getting into this - moving forward, it has to be alongside each other. It's a partnership and it takes time. And I think you've both alluded to that, over the course of our conversation, and also the empathy that's required in understanding where your power is, and how you can negotiate and be able to use it or not use it, or share that power as well. Things that I certainly was hearing in terms of the relational factors for engagement, before we start to wrap up.
I do want to finish with one question and that is, what little actions can we take? If we were to say to someone tomorrow, “Here's one thing, practical, you can do to improve.” From a relational process perspective for patient engagement, what would you suggest to them?
Besides wandering conferences and getting coffee, which I think are awesome, and I just love that it was so organic for both of you to meet and nurture that relationship.
Karine
I think what I would say, so some of the things I would say is if you're thinking of engaging patient partners, so if you're a researcher and you're thinking of engaging patient partners, try to do it as soon as you think of a research idea, right?
Try to engage them early. I think you mentioned that, right? Engaging them early, even if it's not, you don't know what you're going to do as a research project. To get people with lived experiences on board early so that you can think about it and start a discussion and a conversation over time about these ideas, right?
Rather than, “Okay, I have a grant, it's all written up. I need a letter of support.”
I mean, we've all done that to be fair. I mean, it happens sometimes because sometimes, you don't have a choice, and you have to do things quickly, and then you're like, “Oh, no.” But I think, even if that happens, that you bring people on board, give them enough time, always cognizant of, it's going to take time for people you need to have discussion. You need to have the time to discuss these thing with the patient partner, and you need to also discuss each other's needs. And like, so for example, terms of references, right? So you know — what kind of compensation, what kind of work, what kind of task, what kind of schedule, what you know, just to, and really ask like all these questions to patient partners and not patient partners as a global thing, but like each one personally when you bring people on.
Maybe I'd say also if you can find someone with a lot of experience as a patient partner first, it's easier because like, so Laurie is very experienced. I'm not sure I would start with someone who's never been a patient partner before. I would start with someone who, or you try to find something, someone like Laurie to help you find other people and to, you know, to really try to like, because you all need to learn through it, right?
So that's one thing. And find some people that you connect with and that you find nice and you know, it's easy to work with. And one of the things I would say is there's also a Clinical Trials Ontario. They did a tool. There's a patient decision aid and there's an investigator decision aid on their website. And so it tells you, “Oh, if you're a patient, would you like to be a patient partner in a research team?” And what do you need to consider to become a patient partner? And the same for an investigator. “Oh, you wish to engage patient partners. What do you need to know to do this?” For example, you'll need to find a budget.
It's going to take you a bit more time than if you don't do patient engagement. All these things you need to consider, you can't say, “I'm gonna ask for letters of support the day before the grant.” Then it's all set up and then not speak to them for months until the publication is ready.
So this would be my advice. I don't know, Laurie, if you have others?
Laurie
I guess just not be afraid to take the first step. I think I hear that a lot of the people think it's complicated, but, you know it needs some complete consideration and thought, there's no doubt. We're not just gonna steamroll through and treat patient partners exactly like you would someone else on your research team.
And arguably there I'd say, maybe it would change the dynamic within how you communicate and manage your research. A lot of those collaborations, is it really any different than how you collaborate with someone else? Aren't these the same skills really that you're just using in a different way?
So yeah, I would just say, don't hesitate to make that first step and go in with, I think first and foremost, an open mind a mindset that you're actually going to change something with your research. And starting to build those relationships with even a few patient partners. I always recommend more than one, just because life happens, and it's good to get a broader set of feedback and that sort of thing. But that would probably be my one take home message.
Karine
It's funny, Laurie, I'm much more cautious than you, but I know how much Laurie has a lot of courage for a lot of things. For a lot of meetings, for a lot of things where you put yourself out there and you need a lot of courage to do that. So I think, unfortunately like you said, you need to be willing to share and everything. And I find we need to recognize that every time that a patient partner says something that is personal, they open up. They open up to be judged, criticized, everything. Right? It's a bit like saying to your physician that you don't follow their, that you don't take the prescribed treatments or asking too many questions in the clinical encounter, which never happens to me.
Laurie
I think just recognizing that you're not coming at it from the same perspective at all. I mean, when was the last time you had to go to a meeting and share all of the bad and all the things that may have happened to you?
I'm involved too with Sepsis Canada because of an experience with sepsis, just to bring this home a little. Not a great experience. A lot of the people involved as patient partners in the network, including myself, I mean, suffered incredibly. We were in ICU, or having organ failure, organ damage, going into…
These are not pleasant experiences yet, you know, the expectation is, “Oh, you'll just sort of open up about all these things.” We don't expect that of others. So yeah, it's definitely more challenging. You really need to try to understand where people are coming from and to try to live a day in their shoes, trying to share that same sort of information with a bunch of strangers.
And I think maybe it's because I've come to terms with how arthritis has fit into my life. Like I said before, it's part of who I am. I'm now at the point of - like calling myself disabled as well, I've grown into that word - where I didn't always feel comfortable identifying as that because I'm owning my place in the world.
So I guess that's some of the courage, that I guess courage is talking about; I don't know, it doesn't seem like courage. I just feel maybe I'm finally just at a place where it's okay to be that, and to say that, and to share these things because it'll never get better if we can't even just have some basic understanding of what life is like for folks.
Bryn
I think that's what really brings it home, in terms of- when we talked earlier, at the start of our conversation about empathy and to build, to be able to go into rooms, and to share for understanding that your words can help shape and improve others' lives. But to have that courage and to also to not be fearful, like you said, Laurie, about going to build a relationship. Don't worry, learn together. It's not about- everyone's going to make mistakes, but we can learn from that together if you have the right mindset.
Let's help make patient engagement in research the standard or As PER Usual.