Creating a World of Wonder: Supporting Capacity Building in Patient Engagement
Episode 6, featuring Yvonne Pelling and Annie LeBlanc
Meet Our Guests
Yvonne Pelling is a dedicated caregiver and advocate who passionately pursues her love of learning. Presently, she is the patient and community engagement lead at PASSERELLE. Her work is rooted in the values of collaboration, creativity, equity, authenitcity, and fun! Her work focuses on training and capacity building, educational design, mentorship, and creating healthy relationships. Yvonne uses human centered approaches to elevate and understand lived experience, with the ulimtate goal of improving health care outcomes for everyone.
Annie LeBlanc is a clinical epidemiologist, Full Professor in the Department of Family and Emergency Medicine within the Faculty of Medicine at Laval University. She’s an investigator within the VITAM Research Center on Sustainability Health where she co-leads the Patient, Public and Community Engagement Research Core. She is the Director of the SPOR National Training Entity, PASSERELLE, a network of networks, dedicated to supporting and promoting the collective efforts to develop and sustain capacity in patient-oriented research. The research in her lab to accelerate the integration of POR into practice to optimize delivery of health care and bring about rapid and meaningful benefits to patients.
Contact the hosts: Anna and Bryn
Resources
Passerelle: National hub in capacity development for patient oriented research
Bryn Robinson
Today we have two great guests who are going to share lots about training in patient engagement. Now, according to the participants of our study, when it comes to learning about patient engagement, a lot of folks learn just by doing it - and there are few opportunities to learn about it before one has a career.
So, how do we help researchers and patient partners to reach their full potential in their engagements?
Anna Chudyk
Well, Bryn, as you said, I'm sure that today's guests will have a lot to say about this. But, if you're asking me, which you are, here are some of our study participants’ ideas about how to create a future state in which academic researchers and patient partners have access to the content knowledge they require to reach their full potential.
Key mechanisms include the development of centralized and universally acceptable information repositories - so, websites or portals that basically serve as a one-stop shop for all of your patient engagement training tool and education needs. These centralized repositories will help address the commonly reported issue of poor indexing of patient engagement educational materials. They'll also reduce redundancies and support uptake of high quality information.
Another key mechanism involves integration of education about patient engagement approaches into university curricula, as well as widespread opportunities for patient partners to sit on graduate committees and to interact with trainees in general.
In fact, my colleague Annette Schultz and I, along with six patient partners, who were Roger Stoddard, Delaine Linkiewicz, Leslie Norris Singer, Kurt Schreiner, Kathy Smith, and Brenda Andreas, actually co-developed and co-taught a graduate level course on approaches to patient engagement and research this past winter.
We'll maybe share our experiences with that next season of this podcast, but definitely a key take-home message from our experiences with the course, was the synergistic learning opportunities that arose from students having the opportunity to learn about patient engagement through readings, as well as actually getting to regularly interact with patient partners.
So, to tie everything together, the big picture idea for today is, that by creating a state in which academic researchers and patient partners have access to the content knowledge they need to reach their full partnering potential will not only collectively improve our patient engagement practices, but will also help foster an academic culture in which all viewpoints are valued and patient engagement in research is standard practice.
So, without further ado, I would like to introduce our two guests today. Yvonne Pelling is the patient and community engagement lead, and Annie LeBlanc is the director of Passerelle, which is also known as the Strategy for Patient Oriented Researches, or as commonly stated, SPORS, National Training Entity.
Yvonne, Annie, could you please introduce yourselves to the listeners, including telling us a bit about your patient engagement work?
Yvonne Pelling
Hi, everybody, my name is Yvonne Pelling, and I am a caregiver and advocate in patient-oriented research. I actually started in this work at the network through ACCESS Open Minds, which was a youth-oriented project looking at service design and policy within youth mental health. I was a caregiver council member; I got involved and started to get really excited about the process of research that I worked my way through the council. By a few years later, I was running the council that got me so excited that I went back to school. This is where I went back to school to do a Master's in education, because I became really interested in the process of engagement.
What I see in engagement is a lot of the “what is engagement”, and I see a lot of the “why” of engagement, but not so much of the “how” of engagement.
This is where I met Annie, and I'll just pass it over to [her].
Annie Leblanc
My name is Annie LeBlanc. I'm from Quebec City, hence that big accent, so hopefully this discussion goes well.
“How”… that's a really good question. How did I came to do this type of work, and to do patient engagement research?
Many do not know this, but I'm actually a high school teacher. I started while I was doing my degree in education; I became a caregiver, working through my dad's cancer - and I'm not to give away my age, but that was before the Internet and before support, and it really came- it was really difficult to have the right information at the right time, and be engaged in the care, and be engaged in understanding what was happening.
That change of view of what I was doing, and how I was doing things, which led me to go and train, and from trying to think what we could do, in terms of patient education and helping- I decided to take time off from teaching to further that road, and it was really from there. it's history. I got further engaged in patient education, in trying to give patient voices in the context of care.
And from there, I went on to do a Master's and PhD in clinical epidemiology, to find ways to bring the best evidence and the best data that patients actually needed, not necessarily what the healthcare system thought was important. And that's how I came to working with and for patients and caregivers, and the healthcare setting, to try and change that.
So, years later, here I am, having worked in both the United States with PCORI, which is the Patient Centered Outcome Research Institutes, and really trying to see how we can best support, not only our patients, but their loved ones in the communities, throughout our research and our work. So it's been an interesting journey, across different organizations and institutions to move that work forward.
Anna
Thank you both for coming on. And it's always so fascinating to hear about the different roads that people take and where they take us, but something that seems to be common to both of you - and I know it is - is your passion for patient engagement. So this is going to be a great conversation, I can just tell.
So, on that note, Yvonne, maybe you could start us off by sharing some more with us about your patient engagement work, and what the concept of training and education and patient engagement and research means to you?
Yvonne
So patient engagement and research is really exciting to me because for me, research is this vast, vast landscape, and it really has- we really have the opportunity as people to all be included. You know, I when I first started on a council, I didn't really understand what it was that I was getting involved in. But going through the process over and over again, what I realized is that not only do we have place for patient partners, we have places for community members, we have places for researchers and for students.
And if I've said this once, I've probably said it a million times, the best thing about patient-oriented research is the people.
And we want everybody to really be in there, or at least I want everybody in there, to be expressing who they are. That, for me, really is the foundational thing about patient engagement; we might have certain values that come out that we all see as important, but how we express those values as individuals is key to you.
Annie
Thank you, Yvonne. It's so important what you just mentioned, in terms of values, and in terms of the people, that makes a difference. And as we were talking, I was thinking, “Alone, we can go fast; together, we can go far.” I think that, together, we truly make that difference in terms of how we see things.
We talk a lot about patient engagement, but I think it's larger than making sure that we can bring those voices forward. I think we need to change the way other things also, in terms of doing research, doing care. In talking about patient engagement, for me, it's also about how everyone [can] take a step back.
And this is what Yvonne has taught me that. How do we just take a step back and pause and think about, “What what am I doing? And why am I doing this?”, and this notion of self awareness through the work that we're doing and recognizing why we're doing this. I don't know if you want to add something about it, Yvonne, because this is really how you contributed to my thinking about training - what we need to accomplish and how we can accomplish this type of work.
Because in thinking about this… [a] self-based online module about “What is patient engagement?” is not going to make a difference.
So I think it's interesting to think through how we also changed the way that we learned, that we experienced research as a group, to move forward patient engagement. I don't know if you want to add to this?
Yvonne
Sure. For me, also around the training and the capacity building of patient engagement, what that really comes down to is “what”; I'm talking about that experience- yes, we have modules that can give content, but I think we really need to reframe education at this point, where it's not just about knowledge acquisition or knowledge transfer, which is how we honestly all been socialized to intake education, but to really provide experiential learning opportunities. For me, these are things where people actually get to feel what best practices are, and they get the opportunity to embody the value of lived experience. This is- it's more towards things like building capacity in collaborative and co-design mindsets. For me, even creativity would be a key role in all of this.
But underlying all these things and going back to what Annie says here about self awareness is the most important thing here - because if we don't understand who we are, it's really hard to translate your lived experience. Because then I only understand it in the context of my own self; I don't understand it in the context of the larger picture.
When we embed lived, or when we embed self-awareness into our practices, I think what we get is more accountable spaces. I know that we've spent a lot of time - or at least in circles that I've been in - looking at safe spaces, which is also important, but accountable spaces do something more for us.
They actually embed the “humanness” of research. And the “humanness” of who we are. Accountable spaces include disappointment and hurt feelings, but what they also do is create a space for, not for people to be called out, but for people to call themselves out.
I would say that working with Annie, I find that this is something that we do in our team, and it was quite refreshing. If she makes a mistake, she says, “Sorry”, and it just gives me the opportunity to also make mistakes and say sorry. I think that that's about healthy relationships and connecting with people.
Bryn
I think what I'm hearing is that the training isn't so much about what I think we've been conditioned or trained to look at in terms of modules and textbooks and a curriculum, and this very strict pedagogy of how to be, how to facilitate patient engagement, how to be a patient partner.
It sounds like it's -and I don't like using this term, but for lack of better terms - “soft skills”, that aren't necessarily as conducive to a webinar for an hour that one can go on and learn a skill and, “Ta-da!”, you're a patient partner, or you're a researcher that suddenly knows how to engage.
Can you comment a bit more on how it is experiential learning that really shapes that? And are you building that into the work that you're doing, to encourage more of those relationship-centered, relationship-based skills?
Yvonne
For me, it's experiential learning opportunities. I would love to have capacity-building sessions where we're really looking at fundamental principles of infinite possibility, and inter-relatedness, perpetual change, where we're really diving deep into things, like collaborative and co-design mindsets, and creativity, where people actually get the opportunity to live out patient engagement.
Patient engagement isn't something that we can just talk about. It's something that we live. It's a life experience. It's not just something you read in the paper.
Annie
We can try to read about the feeling to be in a roller coaster. We can try to describe what it means to be at a concert. We can try to see how it makes us feel when we walk on the beach, but until you've been there, and that you've been fully emerged, then you'll realize what we were really saying.
Yvonne and I often talk about this is that- I was making comment about not having information when my dad was sick, because, not long ago - at least for me - you didn't have information at the top of your fingers. We've designed learning in terms of sharing information and about acquiring information because that what was needed, because we didn't have anything else. So it was about all taking in, and then if you were lucky, you could actually experience it, and try to transform that information into skill, and then into competencies.
And years later, with all of that information available, we haven't thought about how to transform it. We still promote that way of thinking and of learning.
Information is important, but this is not how we're going to change it. And we've seen it in medical education, in any other field, that training alone doesn't change behavior, doesn't change action, doesn't change the way that we do. So I think it's the same way for us.
If we want to truly build capacity - and I often talk about capacity rather than training, because I think that's what we're aiming for; we're aiming for people to be able to engage in that work, to co-create, to make a difference all together. To build that capacity, yes, we need to know and to have some information and to understand where does that come from, and why do we need to move into that direction.
The “what” and the “why” is important. But then how do you move to the “how”? That's what Yvonne was saying earlier. Moving to the “how” is difficult, because within that capacity framework, we need to expand that to think, “Okay, what are the infrastructure that we have in place that will support patients coming together, that will support research team to move in that field?”
We also need to think in terms of what [is] there. Do we have physical space? Do we have opportunities to bring people together in those infrastructure? So how do we connect? How do we network? How do we bring the right people at the right place at the right time for the right learning?
Because again, when you're most often- when you're taking those training in those courses, it's when your group, no, it's with your peers. Sometimes it is with different people, but again, you're not, you're not sharing those difference of ideas. You're not having that Oh, haha moment. I didn't think about that.
I'm so grateful that you've brought in this point of view. So how do you create that space to engage with it? How do you provide the right mentorship to help and guide and facilitate those discussions? Because, you know, we've all experienced it. It's difficult. It can be, you know, it can be quite challenging at first, both from a patient perspective, but also from a clinician from a researcher for a training perspective to be confronted to all of those different views and opinion and how to bring all of this together.
So, how do you also think about that mentorship and about that support that we can provide. We've been really trying to think through, as we want to further help with patient engagement and see how we move forward to the science of patient-oriented research- really to think beyond that notion of training courses, and think through in our environment, how do we build - and Yvonne said it at the beginning - how do we build those relationships? How do we make sure that we all come together? That we have the space, the environment, the financial support, whether we like it or not, we do need resources as well to move projects forward to move collaborations to help with patient compensation, with different training, with those environments. I mean, nothing comes, unfortunately, for free. But we also need to think through that.
It was actually one fellow, when we were talking to her about training opportunities and said, “What do you see next for trainees?” And she says, “Well, if you do give us fellowship and dollars, it's nice, but it doesn't mean that we know what to do with it.”
So it can actually become unsettling to see. “Okay, I need to do this by myself.” Again, it's really this multifaceted approach, where not one thing is the right answer.
Anna
I love what you have both shared, because it's so eloquently verbalized something that I've tried to share. But more importantly, I felt, and I tell anyone that I talked to about patient engagement and research, and patient-oriented research.
One of my very favorite things about it, is that it has actually changed who I am as a person. And the way that you both speak at it, it's clicked for me. It's because it's gotten inside of me, and changed me, not to be corny, but in my heart. And also in my approach, to how I approach research, and how I do things. And now it's clicked, in the first place, that we should perhaps all start together when we're helping. Yes, there's the “to-do’s”. Yes, it's important to understand the processes, but those will not result in meaningful patient engagement until that ability to have empathy, that ability to hold space for others, that ability to not think that, “I know everything, so I guess I'll ask you, but I do know the answer, so could you hurry it up? Because I have another question to ask you that I know the answer to.”
Before you move past that mindset, it won't be meaningful. So the perfect starting point actually is the space where you work together. You interact, you learn how to listen and you do something. Just learn how to be that person that can truly work with others by listening to others and collaboratively trying to find solutions.
So that was so beautiful. It touched me. So, thanks guys.
I’m wondering- moving off of that, how do you think we can convince academia that this is really the next step, or the way, to approach training in engagement?
Yvonne
I'm not sure you can convince anybody to do anything, but that's actually- I don’t think that's something that we have to do. I think it's already coming. I think there's lots of people in this field who want to do this. I think there are people who are up-and-comers who want to do this, and I'm not joking when I say that there's space for everybody in research.
I think it's important that there are people who we disagree with and that are people that we don't see eye-to-eye on. Because actually that gives us something to react against and to react for, and it gives us a space to actually explore ourselves.
I love what you were saying, Anna, that this is something that has changed you, because this is part of that self awareness thing. The most exciting thing about research is that we get to come to work every day and say, “I wonder. I wonder what this treatment will do. I wonder how treating this person will change the outcome. I wonder… should we use this new infographic and will it reach more people?”
And you can also ask, “I wonder who I am. I wonder who I am in this space”, and then you get to explore that as well. I think [that] is one of the greatest things about this work, and actually is what makes this work so meaningful.
When we actually stop to ask ourselves, “Who I am, what position do I want to take, what is meaningful to me?”, that's when all that intrinsic motivation comes out, then you start doing the work, because you want to explore something.
And if there's anything that I've learned about research, is that once you find out what you want to do, there are so many avenues to go down. It is so incredible. I am so excited about research. I've never really thought about research as this exciting field, but research is this exciting field. And just to your point - it's highly relational. It is highly relational, and that's where we get all the next steps.
Annie
And I love what you just said, because you said- I love research. I never thought I could do this. I'm loving this.
So, bringing back to one of your previous comments, Anna, about how do we integrate that in academics - I think it needs to, actually. We need to talk about research from an early onset, I think it needs to even start at elementary and high school, because it is about discovering the joy of working together and solving an issue because for too long, it's been about research and here's the going to give us the, you know, the evidence and here's and we don't know when we can change and am I, should I be vaccinated or not?
And why? And so they're just so many questions and we never think about general health literacy and numeracy. So how, from the get-go, from an early childhood, are we being involved in thinking through how we want to change things and how our voice- whether we're in elementary and high school, whether we're a patient before, whether we're a health care provider, or growing up to become researchers - if we learn to have a voice, and we learn to share what we think, and to work together and to say that we together can make a difference, it can happen.
I think it needs to be, because it's weird. You get through high school, you get through college, and sometimes university, and you're being told that you need to be right. You're being told, “Here's a science fact, and you can't do research if you're not a researcher, and it needs to be done this way, and here are the rules”, and then, suddenly you're being told, “Oh, no, bring everyone on board. Take your time. You need to find that space.”
So it's hard, and we've seen it with many patients: “Well, I don't know what to say. I've never been asked what I thought, I've never been asked to be part of this type of discussion.” So we need to change the way we think about research and care early on, so when you're talking about… so, that's always my take: we need to be more involved early on.
And in terms of integrating into medical school and graduate school, you know, this is my two cents on on this. But when we're having all of these add on, and unfortunately, this is what we're seeing in most of the institutions: “Oh, by the way, here's this new thing called patient oriented research and patient engagement. We're going to give you this one course about it, but the rest is going to stay the same way it's been for the past 15 or 20 years.”
It needs to stop being an add on, and we need to start thinking about it in everyday course, in every way that we're doing our classes, the way we think, the way that we engage with knowledge. So how we bring the principles of patient engagement and patient oriented research. In all of our course in all of the curriculum, so that it's not about doing patient oriented research or not. It's it's about engaging from the beginning into finding ways to do the best research for those for which the research matters. Not only I-
I always say that the best world of patient-oriented research doesn't even exist - because it is the norm. It is the way that we're doing things. So we don't have to call it out and say, here's 2 credits or 3 credits because it's been embedded into the way that we've been dreaming for so long…
But this is me being a little bit…
Bryn
I was going to ask you about the education actually, as the next step because it's one of the things that has occurred to me… certainly there's been struggles in, and I think to Yvonne's point, we're getting better, it's less of a convincing that we have to do that; there are more folks, critical mass, that wants to do it. They’re just, there's other barriers, perhaps, we have to take down for them - that they feel these constraints.
Like you said, it's one course, that they have all these other courses that they need to take care of, and it becomes this very mechanical thing.
Maybe it's touching back on some of what Yvonne has said about creativity and collaboration. I see, for example, in some medical schools, they teach improv to improve communication.
Do we need to go that outside the box to really encourage these kinds of skill building in graduate and medical school? And also, try to address ahead of time some of the barriers perhaps we can anticipate, having gone through some of this education, these pathways, ourselves.
Yvonne
I would argue, actually, it's not that outside the box. Collaborative mindsets are what we do every day, so to teach it is not outside the box. Same with co-design mindsets or future-thinking mindsets; these things, to me, are just regular run-of-the-mill skills that we need in order to do this work.
Annie
it's interesting because it's not necessarily taught in research or at the graduate level — those professional skills about negotiating and collaboration. And Yvonne, I have always been thinking, if I could teach one thing, it’s listening. Because it's what it is, and now you've said it yourself: we're prompting the next questions, and want to have our point across - and we're already thinking about what we're going to say next. We’re not taking that time to to listen. But those [skills] are taught in other curricula, so why not in graduate studies? Why not in research to make sure that not only are we helping researchers and trainees become the best that they could be in term of research competencies, but also in terms of professional and human competencies? How do we grow careful and kind researchers?
Bryn
I guess that's what I was wondering was that, are we - because I see a lot of great work, and that we've, at this table, have done a lot; our colleagues, in terms of putting out different rubrics and different curricula to encourage what we feel would be a positive, meaningful patient engagement.
But now listening to that, I agree with everything that both of you are saying. Have we been going about it wrong in terms of training up to this point? Maybe that's more of [a reflection of] myself, rather than yourselves, because it sounds like you very much are advancing some of these. What might come across as novel in terms of an approach to pedagogy to patient engagement…
Have we been teaching the wrong things? After a certain point, we can teach people, “This is the steps of research”, but there seems to be overly a focus (at least in my own experience) on those pieces, rather than teaching us to listen as a skill - as a course or webinar as opposed to, “This is what a T-test is.”
Annie
Well, I guess we've been focusing on information sharing. So, that information is important, but I think we might be giving it too much space. Maybe as we go along, we need to focus on the relational a little bit more, which is harder, more difficult, but it is being done.
It's just finding ways to bring it. And I know some program are doing a really good job and there's a lot of examples of programs that are bringing those two to together. I know there's a lot of initiatives. I think this is where we need to go overall, regardless whether it is patient or into research, but to bring more of those skill forward. But it's hard and that experiential learning is hard. How do you create those opportunities to network and co-create within the context of a defined time and space and particularly within a defined time and space of productivity?
We talk often that we do need time to take a step back and to look at what we're doing and how we're doing things because we know that in the long run, the change that we're aiming to produce is more meaningful and will be embedded. I mean, I don't have all the evidence behind [this statement], but what we're seeing is that this is actually how you bring about the best of care in practice. But it takes [time] be this, to gain this — we need to spend time prior to this.
I'm tenured. So whether it takes me 3 to 4 years to finish a study, I've taken my time. We've engaged, it's meaningful. The work that we do is going to be embedded. The practice is going to remain there. So in the long run, we know that we made a difference.
But for trainees, early career investigators — they're talking about how many papers, publications, grants that you have — so in your productivity, this is counterintuitive. So how do we not only work (because we've been talking about training)- but again, if we go back to that capacity, we also need to recognize as decision-makers, as funders, as evaluators of the quality of the work, that impacts matter more than numbers. That's also a big change that is going to be very helpful in thinking through the way that we engage patients in the way that we do this type of research.
I think that's actually at the heart of training. Because - I don't know if you've experienced it and I know you're in that space as well - but it's hard, because you’ve wanted to do this work, but then you've got this pressure of, “faster, quicker, right now.“ How do we counter that? How do we support that capacity building in the training that takes more into account impact and meaning?
I don't know your thoughts. I'd love to hear your thoughts around that because, whether we like it or not, it is the reality in which we live in.
Yvonne
I think, also, in terms of training that we've done to date, and maybe particularly around patients and especially with knowledge transfer, is that what we’ve done has given us a really good safety net. We understand what patients are being told, and by doing that, what we get reflected back to us is the narrative that we want to hear.
And the problem with that is that we're really trying, maybe not intentionally, but what we've done is we're controlling the narrative.
And the problem with control is that it is the enemy of connection. And in order to, for us to truly connect, we need to bust that wide open.
So if we want to look at training and capacity building we really need a new way of doing it so that we can connect.
Anna
I’ve found this really interesting and it's been stuff that I've been reflecting on myself as an early career researcher. And for what it's worth, something that I have found that has been very helpful (and it's been a result of really engaging with patients and caregivers) is that in my experience, most patients and caregivers are super happy — they're proud of you that you got your manuscript, like, “hooray for you” — but then they push you beyond that because a lot of them enjoy the thinking and the design aspect, but what they want to see is change and they want to see change that will be long standing and also meaningful to people's lives.
So, yes, maybe sometimes engagement, it does stretch your timelines. But if you think about it right — if you engage the right people from the very beginning in designing your study and how you're approaching things — what you maybe are taking more time with, what you get at the end is something that, again, I haven't evaluated it any way either, but from my own personal experience, the outcome is more likely to be something that is long lasting, that is meaningful, and does make a difference to people's lives.
So, I think that, like you said, if we start to look at potential impact and actual impacts and weigh that a bit further or more.. then I think that will also encourage people and I'm sure that researchers that partner will see that for themselves too. They won't go back to doing things the other way.
Annie
You can't. I mean, as a researcher this is my personal experience. We conducted this five year study at Mayo looking at trying to engage patients and clinicians across primary care practice in Canada. We struggled with diabetes. It's supposed to be, you know, there's patients everywhere. It was really difficult to engage with them. And we aimed for 600 patients and we had less than 200 in a five year study and it was really, really hard.
Then we did the same approach, the same type of work that we wanted to do in depression, and it was like, “Okay, we can't do this the same way that we did.” It was at the beginning - it was in 2010, so, really, the beginning of engaging patients. We had this diabetes patient advisory group and we started meeting with them, and then we met with patients with lived experience, which we called focus groups back in the day, and that's what it was. But we start engaging with them and saying you need to tell us what you want and what's going in. It changed the way we did research.
So, you know, I keep saying that it takes time because the engagement piece takes time. But once you build an engagement piece, the work itself is so meaningful.
So we went for the same time of study that took 5 years, couldn't recruit anyone. We work with patients with severe depression, which is hard to recruit and it's hard to engage… and we recruited over 300 patients in a little over a year. We had all the retention and we had full impact and this is one of our favorite papers and work.
The intervention that we designed is now embedded across so many health care organization because those patient helped us think through the way that we were doing things.
[They said things like], if you talk about depression, it's not going to mean anything to me. You need to talk about the way that I feel about whatever. So they really helped us shape the way that we were thinking about recruitment, the way that we were thinking in terms of our intervention, the way that we were looking at the service and so on and so forth.
And we're in the context of training, not of research, but I do want to point out that the value of what they can bring is. It took longer from that engagement perspective, but once we got into conducting this study, we gained so many years and so much more impact from there. So, I think that (and this is where people might see the hurdle from a researcher perspective), is the notion that we keep telling people that it takes time. But when you build those meaningful relationships, then the work is worth it and once you have those relationships, you just keep going. It's such a small investment for everything that it has to offer. But yeah…
Bryn
No, that’s great.
Annie
… it [does] take time, but the reality is that the difference is just phenomenal.
Bryn
Yeah, it has to. But I mean, it's so vital and relationships don't operate on a schedule. They have to take the time that you have to give them. The space to breathe and to really develop. It's an excellent point. And I guess to keep thinking ahead and moving forward. And this may be particularly challenging given some of the things we've talked about today, but …
What would be one action from each of you that we could do moving forward to encourage a more positive, more meaningful capacity building or training in patient engagement?
Yvonne
Well, for me, it’s take your time and actually just stop what you're doing. Take 10 minutes every day and write down who you are, why you're here, and how your actions today have either furthered you towards that or have pulled you away from it. And if you did that every day for 10 minutes, I bet what you do in patient-oriented research would change.
And if you're doing that, and everybody else is doing that, then we will all change.
Annie
As I said, it's almost nothing to add to this. But more from a pragmatic perspective, I think it depends on what you want to focus on.
So like we said, information is important. I know you were talking at the beginning about how having a repository in a one stop place [is important]. Hopefully the National Training Entity is that place. In working with all of the different people that have done phenomenal work over the years, we can centralize all of that information so that you can find the right learning activity (whether it's a seminar or training) that works for you.
I think in terms of that, there's still the importance of that learning piece and that learning piece that needs to be followed up with different opportunities. And this is where we need to think through “the how”, as Yvonne was saying. So maybe it's less about training, but more about a onboarding; perhaps there's this onboarding process where you can tell people to go from A to Z right away.
It needs to be about raising awareness. It needs to be about finding ways to have that meaningful engagement. It’s thinking through activities with your group in terms of, “Do we have that space? Who do we need to connect with? How do we have conversations over a period of time?” So it's more in those different types of activities.
This is one of the projects that Yvonne is leading with Passerelle - this onboarding. What does it mean for everyone to onboard in patient oriented research? What it means is — sometimes it's that reflection, sometimes it's information, sometimes it's tools and resources to help you through some elements, sometimes it's finding ways for researchers to change the way that they're doing research. Because it's one thing to have patients involved. It's another thing to change your study design. [It’s also] supporting people to have conversations, supporting them physically — “Do our patient partners have a computers, Wi-Fi, different access?” So, again, I think there's ways that we can think together about those different cues. And then for each of those cues, helping and supporting. Like I said, we've got these trainings, but working also with those groups in meetings — patients, trainees, and researchers — [meeting them] where they are at, and making sure that they have all the different resources. It’s finding the right one for the right person.
But going back to Yvonne, creating those experiential learnings is difficult. It's hard, particularly post COVID… people are still trying to to bring that. So I would love to be able to think through, “How do we do this?” Is it more online meetings where we create those communities of practice or is it more at a smaller level in practice?
I'd love to eventually to hear what people think, because we don't have that much evidence in terms of what works, what doesn't, and where we should be heading. I know we want to try to find out.
I think that the best way to find out is to try to see what feels like it’s working because not everything works for everyone. [It’s about] that right match.
Bryn
I think that's actually a great place to move forward with our next steps. I think that if the opportunity is there, to take a page out of both your books Annie and Yvonne- I mean. I’ve certainly learned so much. and I know Anna has today. as well. Perhaps we can continue to learn together with both yourself and Yvonne… moving forward to build that relationship. and to start figuring some of this stuff out. I think it is vital that we move from an instrumental to more of an experiential capacity development for patient engagement.