S2E5 - SPOR Passerelle National Training Entity (interactive transcript)
Re-examining the concept of capacity building
Episode overview
In this episode, we are joined by Yvonne Pelling (the Patient and Community Engagement Lead) and Annie LeBlanc (the Nominated Principal Investigator / Scientific Director) of the Strategy for Patient-Oriented Research (SPOR) Passerelle National Training Entity (NTE). Through their engaging discussions, Yvonne and Annie help listeners re-examine what it means to build patient-oriented research capacity among academic researchers, patient partners, and institutions.
Read on for the full episode transcript!
Meet our guests
Yvonne Pelling: is the Patient and Community Engagement Lead at the SPOR Passerelle National Training Entity. Yvonne began her work in patient-oriented research through the SPOR project, Access Open Minds sitting on the Family and Carers Council. This work sparked her interest in capacity building, training, and learning. Yvonne is currently pursuing a Master’s Degree in Interdisciplinary Education in Learning Sciences at the University of Calgary.
Annie LeBlanc: is the Nominated Principal Investigator / Scientific Director at the SPOR Passerelle National Training Entity. Annie is also a full professor at Laval University in the Faculty of Medicine, and a researcher at Vitam - Laval University’s research centre on sustainable health. Annie came to research through her role as a high school teacher and informal caregiver, which inspired her to learn more about patient education and empowerment. Annie obtained a master’s degree, a PhD, and then entered into her current roles within the field of Patient-Oriented Research.
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of Contents
Considerations for capacity building in patient-oriented research
How can interdisciplinary collaboration enhance patient-oriented research?
How can I build capacity as a researcher, patient partner, or team?
Resources
Episode Transcript
Anna
Hello!
Welcome back to Season 2, Episode 5 of asPERusual – a podcast for practical patient engagement. My name is Anna Chudyk, and I am your host.
Before we cut to our main episode, I’m going to take a brief moment to tell you about a public form that is being put on by Health Data Research Network Canada on April 23, 2024 in Montreal Canada. The forum’s title is Health Data for All of Us - Earning Trust Through Transparency. If you are interested in joining academic researchers, community groups, members of the public, industry leaders, and policymakers in timely and thought-provoking discussions about the issues of trust and transparency in the use of health data in Canada, this forum is for you! This day-long event is open to the public, and a hybrid event, meaning that you can attend virtually or in-person. You should note however that there is a charge of $10 if you would like to attend in person and are a member of the public, a community group or student; the tickets go up in price dependent on whether you are a researcher or from the public or private sectors. The stellar lineup of speakers includes health data researchers, data equity advocates and patient partners committed to building trust among the public in the access, use and sharing of health data. There is a limited amount of available tickets so be sure to snag yours - we’ve posted a link to the event on our Substack or you can always Google, Health Data for All of Us - Earning Trust Through Transparency public forum. I’ll be checking out the event virtually so hopefully I will see you there!
Ok now back to today’s episode, which is a continuation of our series aimed at bring awareness and understanding of existing Strategy for Patient-Oriented Research (or SPOR for short) infrastructure to support Canadian patient engagement in research. In case you’re unfamiliar, SPOR is a national coalition that was created by Canada’s major public funder of health research, the Canadian Institutes of Health Research, to champion and support research that focuses on patient and public identified priorities and outcomes, and engages patients and the public as members of the research team.
So with us today we have some familiar faces from season 1 – that is, Yvonne Pelling and Annie LeBlanc who are here on behalf of the Strategy for Patient-Oriented Research National Training Entity Passerelle (or SPOR NTE or Passerelle for short). Thanks for wanting to be on the show again!
Could you introduce yourselves to our listeners?
Yvonne
My name is Yvonne Pelling and I work with Annie at the Passerelle. I work on patient and community engagement, and I started in this work through the first SPOR project, Access Open Minds. And I started there as a caregiver/patient partner on the Family and Carers Council and I was an advisory member. And I really did the gamut of opportunities that there are for patient partners. So I was a member on the council, I was a finance officer, I was a secretary, I was the chair of the council. And eventually I ended up in a role as a research assistant. So I really tried out research, that was really fun for me. And what really sort of sparked my interest throughout this whole process was my interest in capacity building, training, understanding what learning is, understanding what knowledge is. How do we create knowledge? Which landed me back in school. So I am currently a master's student at the University of Calgary. I'm pursuing a master's in Interdisciplinary Education in Learning Sciences.
Annie
Hi everyone, my name is Annie LeBlanc. I'm a full professor at Laval University, at the Faculty of Medicine, and a researcher at Vitam, which is a research centre on sustainable health. I came to research from a very interesting perspective, I think. For those that doesn't know yet, I'm a high school teacher. So going through education and having to at some point work and take care of my dad who was sick for a number of years, and becoming a caregiver kind of got me into wanting to change things. It got me to go back to school and learn more about patient education and about empowerment. Which led to doing a master's and then a PhD, and then becoming a faculty member, professor, and researcher. So it's been an interesting and really fun journey, because back in the day you would talk about hearing the voice of of patients and their loved ones, and it wasn't in the cards and it wasn't there at all when I started to do this type of work. So I'm so excited to see where we are at today in terms of involving patients and families and doing research with, and for them. So it's been quite a journey, and I have the pleasure and the privilege to work with so many at Passerelle - Yyonne among others. even among others. So we're excited to be here today and tell you more about our ways of thinking about capacity building and how that applies to patient-oriented research.
Could you please provide an overview of what the SPOR NTE is and how it came to be?
Annie
I think that the prelude is perhaps more thinking about what capacity means and how Passerelle can best support capacity. Passerelle it is actually a network of networks. So, the Strategy for Patient-Oriented Research from CIHR launched their initiatives a little over a decade ago, with many SPOR units, networks, grants, projects, and scholarships. And over the years there were a number of lessons learned and a number of bright spots, amazing projects, and there's been a lot of of interesting activities happening. And there was this desire and need to bring all those lessons learned together, the good and the bad, and really think in terms of, okay, what are we doing next? How does this help build our capacity to be able to do patient-oriented research? So that came at that moment in trying to bring all of those forces together to say, what are the key elements that we can bring together?
How do we join forces to create a pan-Canadian environment where people can actually learn, grow, share, and be empowered to engage in patient-oriented research? Hence Passerelle which, for those that are not French speaking, refers to all those little bridges. They're not those big bridges - it's the little bridges that you're bringing together because the river is just large enough that you can't jump over it and you can’t swim. So it's all those beautiful little bridges that make connections between people that are close, but not close enough to actually be able to work together. So Passerelle, the name, was born through our desire to make those different connections and help us navigate from one place to another and bridge those different solitudes that we've seen across across patients, patient researchers, decision makers, or even across different organizations. But again, focusing on building capacity — what is building capacity?
How does the SPOR NTE conceptualize capacity and how does that inform its activities?
Yvonne
There's this really clear distinction in the patient story that I often hear about sort of pre-diagnosis and then sort of after-diagnosis. And you also hear this from family members. And in that after-diagnosis part patients really have to understand how to live with their new diagnosis, their disease, or their mental health concern, whatever it should be. And in learning how to do that, not only do you go to a doctor and they give you information, you might get support from a peer support worker, you might get information online, but you also have to live it. And in living it, what you do is you get that sort of experiential knowledge and you have to learn what it is to have your disease. So what affects me day to day, what I can do, what I can't do. And I think that there's something in there that we can use in capacity building when it comes to patient partners and researchers, it’s really an understanding of the self - how am I in this new space? And so for me, capacity building has to do with really getting to know who you are.
Annie
It is really interesting because it's about knowing who you are. In wanting to be able to build your capacity to do patient-oriented research as a patient, you need to make sure that you have the capacity to care for yourself, period. So I think one is linked to the other and they have to go together. And even as a researcher, I need to be able to do research and to know who I am in order to engage in patient-oriented research. So I think that the capacity to be yourself and to know who you are, as Yvonne was saying, is key. And that translates and applies to Passerelle in the sense that while we're focusing on capacity building for patient-oriented research, we can't forget that people around it have their own physical capacity, and that needs to be part of how we're working toward that, particularly for our patient partners and their loved ones.
For us, when we're thinking about capacity, the first thing that people often think is training. And it's called the SPOR National Training Entity, but it has to go beyond that. Nowadays you find information everywhere, but finding information, being trained, and having this class of courses is just absorbing knowledge. It doesn't mean that you can apply it, it doesn't mean that you can actually act on it. So while Passerelle does focus on learning, we're trying to bring together what we've done in the past decade, and trying to find the best pathways for our different types of learners. We need to go beyond that space of gathering information and trying to see:
How do we move forward further as individuals?
How do we apply that knowledge?
How do we collaborate with the right people, at the right moment, at the right place?
What I'm experiencing working in primary care might be quite different, the barriers and facilitators to doing POR might be quite different if I'm working in the ICU or if I'm working in low income countries. So as we're bringing information together, how do we turn that into learning and competencies with the right people at the right time? Because that's going to make a difference in how we interact with those that are already in the context in which we want to do our work.
So Passerelle works at the individual level to provide training and learning opportunities, but also works to provide mentorship and to opportunities to network with peers. And when I say “peers”, for us, any learner is a peer, so recognizing that everyone has something to learn, everyone has something to gain in building their capacity to do patient-oriented research, whether you’re a researcher or a patient or a trainee. So it's about finding what works for you and where you are at in your journey. It’s about providing ways to empower patients, researchers, trainees in being able to conduct research. And again we've been talking about scholarships and grants and scholarships for students. Well, a scholarship doesn't mean anything if you don't have the people to help and support you. It just means that you have dollars, but you may not be able to move forward. So we need to provide this support, which means that the investment goes beyond the individual - it works on the team, it works on the projects, it works on the research centres, on the institutions, and even at the policy level. How do we work across those different levels to make sure that we share information so that we're creating an environment that welcomes patient-oriented research?
And we could do one whole podcast about what it is to create those environments. But that's where we need to go. We need to make sure that we're thinking beyond training, and we're facilitating ways that we have infrastructure, ways that people can connect together, can share ideas together, ways that we can actually fund projects so that we can co-construct together what it means to do patient-oriented research and share our knowledge. So for us, it's really beyond that in thinking about what Passerelle has to offer in building that capacity. Of course we're trying to focus on the learning piece, but the learning piece beyond self-based training, which are available. We're working on constructing learning pathways so people can actually work and learn together in the same context and see what works and what doesn't for their field so that at the end of that learning journey, they've actually worked together and they are ready to engage in doing projects and trying to change the way that we're providing care to to patients and families.
We we work in sharing. We're trying to connect people. We're trying to see how we can create a community where we can learn from each other, recognizing that there's so many things happening right now and who does what, and where, and how. But we're trying to find a way to bring everyone together to create some sense of community, to see how we can offer mentorship beyond the student-professor ways, but peer-to-peer mentoring, patient-mentoring.
Yvonne and some of our colleagues are working on ways to help patients become mentors. So what would a mentorship pathway look like for patients who are interested in doing mentorship and in helping teams work toward patient-centred research? In addition of that, we're always there to help and support in conference. We're trying not only to work with our peers within SPOR, but also trying to see who's not doing SPOR and why, and how can we help them get engaged and connect with all of the different members of our communities. It’s kind of that matching game of who's doing what and who would work well with with whom and trying to do these types of activities as well.
And lastly, there's this whole notion of of helping empower individuals in thinking through onboarding. And this is something that has been really dear to to Passerelle. We've talked a lot about the the “why” of patient-oriented research and about who's doing patient-oriented research, but very little about the “how”. So working with our different partners is how do we bring all of that knowledge into trying to onboard people? And what would an onboarding guide look like, and how can we actually make a reality? Because again, it's not just about here's the five fundamentals of POR and do it in your practice or do it in your projects. People need actual tools and check-ins and things like, do you have an environment for your patients? Do you know if your patient have a computer? So there are these day to day tasks and activities that we need to bring all together so that we make it successful.
There's a number of fellowships and scholarships that are available. I do want to mention this MITACS collaborations - I know the deadline is in a few days, but there'll be there'll be more opportunities like this. But working in ways that not only are we offering fellowship, but through these fellowships, there's actually mentoring and networking and peer-to-peer collaborations with different types of partners and collaborators, including patients. So we're trying to get there and as well we're always open to consultations and supporting whether it's the individual, the research teams, the organizations or our decision makers.
Yvonne
I think Passerelle really is responding to what is happening in POR. So we're looking at what is already out there and building on it, but also sort of reimagining what it is that we need. And so a lot of these trainings that we're talking about or learning pathways are there to meet the needs of who's in the field at the moment. And part of that reimagining is to really rethink what education is. We talk about, “what we typically do in education”, which is we learn something and then we memorize the answers, and then we do a test, and now we seem to know. But what we're really trying to respond to is the gap between understanding and knowledge and being able to apply it to your context. So we're really trying to recognize how context is very important and create something where people can actually engage with not just the content, but with the other people in their field. Really, in this view, education isn't just a tool, education is a process, learning is a process. So what does that look like? What does that mean? How can we use that to build the capacity of the people in the field?
Are your services available to anyone? If someone's listening right now and thinking, I'd love to learn more about patient engagement or build my capacity for it, what would be their steps?
Annie
It's an interesting question. I'm smiling because we had a number of discussions around that. We as a collective effort, I'm going to get to your question about membership, we really focus on sustainability. How do we, on one hand, make sure that everything that's been done collectively is coming through and is becoming sustainable in the future, and we’re able to meet the needs of everyone that wants to engage and needs different learning. And how do we do this in a manner that it remains free? So how do you create an infrastructure that is available for everyone and free and sustainable in time? I mean, that's pretty hard, but that's what we're aiming for. We're really aiming to be able to support so that regardless of funding or dollars or where you are at, we're able to engage. So then if everything is free, why do you need a membership?
Exactly, but anyone that wants to engage with us is more than welcome. They can contact us. Of course, there's there's a limited amount of of people and time and so on, but we really always try because, again, because it's a network of networks, if not us, then we always try to find someone who can help and support that individual or group or organization. When you’re contacting us, you’re contacting everyone who supports Passerelle. I was telling our matchmaker, the value of becoming a member; we have a number of opportunities that are going to be coming up, whether they're, small grants for post-doctoral students, or different types of scholarship opportunities, which may require that you become a member. But membership is a free way for you to access our newsletter, to access what is happening, where we are at, and maybe have a heads up on a few new opportunities that's coming up ahead of everyone. But in in the long run, everything that we're offering, whether you’re a member or not, you will have access to it.
Maybe some people are not going to like it, they would want me to push and say you have to become a member. Well of course if you’re member then that gives us numbers and we can say, here we've got 500 members. But our goal is not to get 5 or 1000 or 2000 members of Passerelle. Our goal is to make sure that the people that need support are getting the support. So again, we would love for people to join us. You can go on our website Passerelle-nte.ca and join us. As a member, you'll have things ahead of time, you'll get a few new opportunities and access. But in the long run, everything that we're promoting to our members becomes eventually available for the whole community.
Is there anything that's really percolating a lot in your head right now when it comes to engagement and capacity building that you'd like to share with us?
Yvonne
So what's my future vision? My future vision is about developing 21st century skills. So this is things like creativity, critical thinking, communication. And for me these are skills that are transferable. So you know it's how do I take the things that are about me and then my story as a patient, what I've learned as a patient and then be able to apply it to research? So, in terms of capacity building, these are the kinds of skills that I'm really hoping that we are able to provide at some point or are able to give to patients at some point. I would also love creating learning environments. I mean, the traditional classroom to me does not say “POR”. You know, it's competitive, and not really conducive to collaborative mindsets. So, you know, rethinking what that could look like for patients would be amazing. I'm not sure what it means in terms of training. I don't I don't necessarily have exactly what that will look like. But to me it's really about those sort of 21st century skills.
Annie
And that is something that we don't unfortunately see much of in our curriculum right now. You will see that a lot of the trainings about patient-oriented research are more factual, whereas Yvonne is absolutely right, it needs to be about relationships. It needs to be about how we work together. One of the things that I do want to point out, when you mentioned going to look at our website, is that our website is is a representation of where we are right now, not necessarily where we're aiming to go. So we would love to hear what people think: their thoughts about what they would need, and what would be helpful in their own journey and pathways toward patient-oriented research. So please don't hesitate to let us know and to make suggestions.
So I know with Yvonne we're looking into what does that new curriculum would look like? Yes, of course, there's a lot of information about what is patient-oriented research, but we also need to to bring in those critical skills that Yvonne was mentioning. How do we build that into our curriculum? For us, that's one of the key focus for upcoming years. So these skills, they're transferable to any context, they’re life skills that we should have to begin with and unfortunately, whether you're in high school or in university, these are not taught in the curriculum. So we need to start thinking about how do we bring in those skills, not only in the context of patient-oriented research, but broader also.
In addition to these skills, at least from the researcher perspective, one of the key elements that we're also noticing is the lack of support. In terms of, a researcher values patient engagement, they are involved in POR projects, we're trying to co-construct where we want to go together, but there's still some challenges in terms of how do I change the way that I'm doing things? How do I change strong methodologies like clinical trials? Clinical trials have been there for a long time, systematic reviews have been there for a long time, but how do we adapt those? And it's not that that easy, people may think that okay “well do this”, but it isn’t.
So on this end, there's a way for us to start thinking in terms of how do we change those long lasting methodologies to make sure that they're aligned with that co-construction work that we're doing, and that the outcomes are the outcomes that matter for everyone, while not losing the rigour of those studies? So that's also one of the one of the avenues that we're looking into is around developing more support for researchers and how they can adapt their current study designs to meet that co-construction, but also to stay aligned with the strength of the designs that they're proposing without creating more biases.
How is interdisciplinary collaboration an underlying tenet of patient engagement in research, and how could collaboration help listeners better engage in research?
Yvonne
This is something that we don't really talk about a lot. For me, patient-oriented research is interdisciplinary. We bring together all sorts of people from all sorts of backgrounds. We're trying to even expand that now to even include more people, which I think is fantastic. But we don't talk about how we're going to braid together the voices. We don't talk about how we're going to intertwine the opinions and I think that is something that we need to look at. This is not just patient engagement, this is about collaboration. And collaboration is not only a mindset, it is a way of doing things that I think could lend itself really well to patient-oriented research.
For me, asking some questions around what are the strategies that we're using to integrate voices. What are people's backgrounds and how does that influence POR and how they do POR? Those are questions for me that I'm really interested in. I think that an interdisciplinary approach, especially if we look to other fields, there are many fields that use interdisciplinary approaches, so we're not necessarily new. We can really draw on a lot of work that's been done, which could definitely help us in this regard.
Annie
And it's very interesting because building on what Yvonne has just said, if we're going back to okay, well, if we want to do interdisciplinary work, what capacity is there for us to do so? And this is an example where we say, okay, let's work together. But the reality is that there's also barriers behind it. So for example, you've CIHR and other organizations, one is for health, and one is for other sectors So there's a number of barriers that we don't realize need to change when we're thinking about this. So one would fund students, one would fund projects. So how do we actually help and support these different elements for us to create capacity? You know, we've seen it in different ways. So for example, we've been trying to work in providing scholarships for patients. Well, it's interesting because any way that the system is made, we can’t give scholarships to patients, they need to be graduate students. And if you're at, say, CIHR, they need to be in health, and if you're in this other organization, they need to be in this other context. So it's an interesting journey in trying to say, okay. How do we bring all of these different organizations behind the people that are interdisciplinary to actually be able to facilitate that process and that work?
And I'm thinking of some of our graduate students who are trying to do this work. Well, they might be in psychology and wanted to do work in epidemiology. But the institution is going to say, well, you get to pick one or the other and your thesis needs to be on one topic, not the other. So it's interesting that when we're actually looking deeper into something as simple as “let's work together” all of those different barriers and elements need to come together. And that's what capacity is, is trying. It's not only trying to to move things forward, but it's also trying to remove barriers that are there, that have been there forever, that may we may not realize it, that will facilitate these different processes as well.
And that's always my challenge. From an institution’s perspective like, okay, this is not going to work, that's not going to work, okay. It's interesting to to see how we can best help. And that's our role. That's our role as again, not necessarily at Passerelle, but as decision makers to think through okay what is it that we can do to facilitate that process so it's not only the individual. So bottom line of all of this, it's not only for the individual to to say “I want to do this”. It is for everyone around the individual and for the organization to say, “how do I facilitate this process for, my people and for the people that want to do this work?”.
How can I best start or even continue to build both capacity for myself as a patient partner, as an academic researcher, or as a team?
Yvonne
For me, I always like to think about it as, who are you? Who are you in this field? Who do you want to be in this field? And really starting from the question of what do you want? So I would say do a deep dive into who you are.
Annie
Be yourself, trust yourself, trust others, be kind to yourself and to others. We have this way of wanting everything to be a checklist in life. So we're thinking about, okay, we need to do patient-oriented research. We need two patients on a project. You need to do A, B and C. We need to find funding. We need to do this. They need to be trained. Now when you're looking at it, it can come to this quite heavy process of here's how you're doing things and how and it needs to be from A to Z and so on and so forth.
You are people trying to change something. You're trying to achieve the same thing. You have the same goal. And saying, I want to change this pathway, this experience, or this process. So talk to each other. It's a dance. It's not an exam. It's not a process. It's finding each other where you are at and engaging in conversations about, okay, how do we do this? And it's okay to not know. It's okay to try and fail, but at least you're honest with each other and you're kind and you're trying to change things the way you want. So maybe at the beginning it's little things and then you build on it, but at least you're trying and you want to change things. And as long as you're doing that, whether you have two patients or 3 or 1, or whether they've been involved at the beginning, at the middle, or at the end, the goal is to is to try and see how that works for you, how that works for the people around the table with you, and how it creates the change that you're hoping to change or that you want to see.
Anna
That's really great advice, because in order to truly become a collective, the individuals’ goals and their wants and their needs, which are their goals, have to become that of the collective as well. That's why, from what I hear you say, it is so very important to be clear on what you are bringing to the table, why you are there, what you hope to get out of the research, and then to come together and voice that together, and then through that, begin to create a collective vision for what you're hoping to achieve and how you'll work together to get there. And it definitely sounds like Passerelle has some great resources to help support people towards this. And even perhaps more importantly, it definitely sounds like you guys are pushing the envelope in terms of your thinking about what collective capacity is and how we build that from the individual up as well. So that takes time. And I really, honestly can't wait to see, even though it's not about the end product, the process, and also what it is that you guys achieve through it, because I know it'll be great. So thanks again, Yvonne and Annie for coming on. It's always such a pleasure to see you both.
So before we wrap, I'd like to remind the listeners to please be sure to check out our website asperusual.substack.com, for resources from today's episode, and an interactive transcript from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. And for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in and until next time, let's keep working together to make patient engagement and research the standard or As PER Usual.