S2E6 - SPOR Diabetes Action Canada (interactive transcript)
A network of innovation, self-actualization, and connection
Episode overview
In this episode of asPERusual, host Anna Chudyk sits down with Tracy McQuire and Linxi Mytkolli from Diabetes Action Canada to learn all about the different ways in which this Strategy for Patient-Oriented Research network is committed to improving the lives of persons living with diabetes. Highlights include in-depth discussions of:
the different ways in which Diabetes Action Canada brings together the 4 L’s (people with lived, loved, learned, and labored experience of diabetes) in finding a common language and space for them to work together to make better research, better policy, and better programs that ultimately improve the lives of those living with diabetes.
Diabetes Action Canada’s innovative approach to evaluation (at the network and individual level) and what it reveals about the ways in which the network stands out;
the depth and breadth of involvement and engagement opportunities within the network, as well as their countless benefits; and
key take-aways including the applicability of patient engagement across the spectrum of research and the need to democratize how we do patient engagement.
Hooked? Read on for the full episode transcript!
Meet our guests
Tracy McQuire: has been with Diabetes Action Canada for over 5 years, first as the Manager, Research Operations and now as Executive Director. Tracy brings more than 15 years of research project and program management experience as well as research operations and strategic planning expertise. Prior to joining Diabetes Action Canada, Tracy was the Business Manager for the Toronto General Hospital Research Institute at University Health Network (UHN), leading the strategic planning process and implementation strategy to align research priorities to clinical programs. Tracy holds both a Bachelor’s degree in Biology and a Master’s Degree in Genetics from Queen’s University and obtained her Project Management Professional designation in 2012.
Linxi Mytkolli: started with Diabetes Action Canada as a Patient Partner for over a year. She is now excited to join the team in her new capacity as the Lead of Patient Engagement and Knowledge Mobilization. Prior to joining DAC, she was a Senior Program Manager supporting a national suicide prevention and life promotion program with the Mental Health Commission of Canada. In this work, she focused on centering the wisdom of those with lived and living experience, while also translating findings from academic partners into tangible tools for the participating communities. In addition to her leadership in the mental health space, Linxi has more than six years of experience leading national programs in urban research, youth wellbeing, and sustainability in healthcare. Linxi holds a Bachelor of Science in Biopharmaceutical Sciences (uOttawa) and a Master of Science in Sustainability Management from the University of Toronto.
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of Contents
What role do patient partners have in Diabetes Action Canada?
What are some key applications of your approach to patient engagement?
How are research projects initiated within Diabetes Action Canada?
Which tools do you recommend for evaluating patient engagement?
Which factors contribute to a successful patient engagement process?
How does Diabetes Action Canada stand out from other organizations?
Are there any other ways that Diabetes Action Canada stands out?
How does membership with Diabetes Action Canada work? What are the benefits?
Concluding thoughts on patient engagement within Diabetes Action Canada
Resources
All of the resources below are free for everyone to read:
Diabetes Action Canada website
Diabetes‐related complications: Which research topics matter to diverse patients and caregivers?
Describing the state of a research network: A mixed methods approach to network evaluation
Episode Transcript
Anna
Hello everyone! Welcome back to asPERusual - a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. In today's episode, I have the pleasure of talking with Tracy McQuire and Linxi Mytkolli from Diabetes Action Canada, which is a Strategy for Patient-Oriented Research funded network. This episode is a continuation of our series focused on bringing awareness to Strategy for Patient-Oriented Research entities. Tracy and Linxi, thanks so much for coming on today.
Could you tell the listeners a bit about yourselves?
Tracy
Thanks, Anna, for having us. As you mentioned, my name is Tracy McQuire and I am the executive director for Diabetes Action Canada. We are a Strategy for Patient Oriented Research Network funded through the Canadian Institutes of Health Research and other partners. But really, what isn't mentioned but is very important to mention is the work that we do. We spend a lot of time working with community, patient partners and partnering those individuals with researchers and other people working on initiatives for healthcare improvement to make sure that all the planning and all of the co-design of research has patient perspectives in mind. And we're really having a goal of making sure that all the research that we have and we produce has a direct impact to the communities in which they serve. So we spend a lot of time looking at how everything is in the diabetes landscape and trying to make it better to improve the lives of those living with diabetes.
Linxi
Hi folks. My name is Linxi Mytkolli and I have the pleasure of being the lead of Patient Partnership and Knowledge Mobilization at Diabetes Action Canada. And really, what that entails is working on the how we deliver on patient informed and patient centered research. So my work has to do with connecting the dots with folks with lived/loved experience of diabetes and those that do research or programs about diabetes. And in connecting those dots, we're hoping that we're producing research and programs and policy that's more responsive to patient needs. So the needs of folks with lived/loved experience of diabetes.
Anna
Thanks so much for coming on today. And thanks again for also providing an overview of what Diabetes Action Canada is. And when I was checking out your website and just really learning more about your network, something that really stood out to me was how patients and care partners were really integrated throughout the organizational structure of your network.
Could you tell us a little bit more about the central role that patient partners have in your organization and its activities?
Tracy
It has been a very interesting journey with patient engagement. Diabetes Action Canada came to be in 2016. So a while back. And at that time, patient engagement was not really a well known methodology and people didn't really know how to apply it. And so we've had a lot of learning along the way. We've tried a lot of things. Things might not have worked as well as we thought. There's something different about writing it down and then putting it into practice to see whether or not it resonates with people who have lived or loved experience, if I were to use Linxi’s expression. And so now we've gotten to a place where we still have so much more to learn. Do I say it's perfect? Absolutely not. But we've gotten to a place where we can ask the right questions to change, and I think that's the most important part when trying to have a patient engagement program. We're very flexible and nimble. We learn a lot from what we try to do, and then we pivot quickly to respond to what we're learning from our patient partners.
And I want to talk a bit about how we've integrated their perspectives into our research programs. There's a lot of ways to do that in a very prescribed and formal way, and that wasn't really resonating with a lot of people with diabetes. They wanted different approaches, different opportunities, different ways to engage. And it's been interesting to learn and teach people who are in research, who are very regimented, how to adapt to these real people and their real needs. And it's taken us a bit of time. And as I said, we still have to learn. But now we have research programs that have patient partners who have defined roles that they have helped create because they have a certain level of skill that they have customized to enable their full participation in research projects.
We do the same with our organizational structure. We have patient partners as part of all of our committees, really helping guide the direction of Diabetes Action Canada. Initially we had provided materials like we would to everyone thinking, people are people, they'll understand it. We didn’t realize that people in academia don't speak an understandable lexicon. We needed to really change how we:
prepared people for these conversations,
how we engaged with them within those conversations, and
then learn from them about the roles they wanted to play in these committees.
And as I said, we're still learning. We're very much in the middle of a journey when it comes to bringing in their perspective. But I know Linxi will have more to add because this is her bread and butter. So I'll pass the floor to her.
Linxi
To summarize how we incorporate the perspectives of patient partners throughout our organization and our work, I want to walk it one step back and dive into the lived and loved experience that Tracy mentioned. So ultimately, what we're trying to do is balance the perspectives of what I call the formal system. So folks with:
lived experience: the ones that have the diagnoses on their own charts. They have a distinct set of experiences and the the way that they walk through the world and the health care system.
loved experience: those that are supporting those living with diabetes, they care for them. They're their friends, partners, family, etc. a distinct set of experiences, but equally as valuable.
learned experience: the academic learnings of diabetes, and
labored experience: people that work in diabetes day in and day out. So those with labor and experience things like, for example, dietitians, nurse practitioners, endocrinologists.
Ultimately, what we're trying to do is establish frameworks and processes that allow us to balance those four different types of experiences that are all equally valuable but different, and have them in a balanced way, inform the direction of how we work and what we're doing. What that tangibly ends up meaning is that each type of experience speaks a different dialect of diabetes. Oftentimes I think we're talking about the same topic, and we kind of are, but we're speaking different dialects of the same language. So where Diabetes Action Canada comes in is trying to collect these four different dialects and find a common language and space for us to work together to make better research, better policy, better programs that ultimately improve the lives of those living with diabetes.
Anna
That's really fascinating. I love how your organization is thinking about patient engagement and focusing on patients and care partners, but also thinking beyond that and looking out towards the different types of knowledge users, which are key to making a difference in the care of people with diabetes, and figuring out a way to help them work together to shape the directions of the research.
For people who have interdisciplinary teams, what are some maybe key applications that you've learned from bringing these four different Ls together?
It sounds like working with them separately to prepare them according to whatever their unique needs may be, and then bringing them together so that they can move forward to shape directions is one approach.
Linxi
I think the number one learning is that it takes time. It takes time to work with people separately and then bring them together, and then package the learnings from each separate conversation into a digestible format, where everyone can come into the same arena and work together. And we shouldn't underestimate that time because it is really valuable. The reason I say time is really valuable is for a few different reasons:
Time is valuable in relationship building, which is critical in any partnership or engagement work. We often talk about how important it is to build trust with folks with lived experience, which is true, but we need to build trust with everyone involved. Sometimes I think we mean really well, and we dedicate a lot of time and resource into building those relationships with people with lived experience. And then we forget that we need to be doing that with researchers and clinicians as well. Someone can have the best intentions to do patient engagement and patient partnership in their research, but if they're not prepared and if they're not skilled up, and if they don't have the tools that they need to do that, then we need to do better in making sure that they're set up for success in this work. That takes time and that takes a willingness to, like Tracy said, learn a lot of lessons along the way as well. So something that we've also learned, in addition to taking that time, is to …
Be really transparent and honest about our spheres of influence, but also the fact that we are going to mess up along the way. And…
it's important that we call each other IN instead of calling each other out.
So what I mean by that is we're all equally responsible in making any project where patient engagement is involved a success. We all have to take ownership of our own actions and also help each other learn along the way. It's one thing to tell someone, hey, that language sucks. Like, don't call people x, y, z. Sure, but are they better equipped for the next focus group? Are they better equipped to navigate the next project? What we really try to encourage in the way that we do this work is to call people in and offer alternative solutions and tools for anytime we see an opportunity for improvement. So instead of saying, hey, this language sucks, it's we've heard that folks prefer to be called by this terminology. This is where we've heard it. This is how we use it. Let us know if you struggle. We're here to support. We're all learning along the way.
So those I would say are the two high level learnings. I will offer as a type A brain, a logistical learning, which is — it's so critical to overcommunicate. Over communicate goals, purpose, agendas, questions. Everyone processes information differently. Everyone processes information at different paces and there's always tons of room for interpretation, especially when we're all speaking different dialects of the same language. I often catch myself in rooms where I say very diabetes community specific jargon, and I have researchers pause me after and say, you said rage bolus, and I have no idea what that means. Could you please explain to me? So it's not just researchers and clinicians that speak in terms that we might not understand. Everybody has their own jargon, and I think it's so important to overcommunicate, overexplain so that we minimize that room for interpretation and assumptions.
Tracy
If I could build on what Linxi is saying, she's really coming from it from the patient partner perspective. But everybody in the network has to learn. And so even when we're talking to our most senior physicians, who've been doctors so and so their whole lives, recalibrating their thinking in their role in these situations is actually some of the hardest learnings to have. Where — you enter this room as John, you don't enter this room as doctor so and so because that that creates a power dynamic that leads to engagement barriers. We don't want to be leading with accolades that in some ways separate or elevate people. We want to lead with who we are, what makes us who we are, our interests so that everybody around the table is sharing something personal like patient engagement is very personal. If I'm going back to what we learned — not everybody wants to lead with the thing that they're there for. Not everybody wants to say, I'm someone who lives with diabetes. Sometimes they want to be identified by another character trait or another thing that really makes them who they are. So we want to make a safe space where people can lead differently. And that includes the researchers who are going to be receiving the information and doing a lot of the engagement themselves. That learning has been one of our biggest so far.
Anna
So much of what you both shared is really resonating with me in terms of the importance of over communicating. Anyone who begins to work with me or works with me knows that I always say that I have a tendency to over communicate and over state. I feel as though that really opens the door to building trust and knowing that everybody can just say whatever they're unsure of and start to work out their boundaries and how they all fit. I really love also how you guys seem to adopt a growth mindset, especially with the idea that you're not calling people out. That is, you're not telling them things in order to come down on them because they did something wrong. Rather you’re saying something because everybody's a team. So we're calling in and we're pointing things out so that we can all grow together and give each other the benefit of the doubt and move forward.
I really like what you were saying as well, Tracy, about how we are all people and the power of really trying to level those power dynamics. When this podcast started, a patient partner was also a co-host with me, Roger Stoddard, who's since died. He always said that he thought that one of the most powerful ways to build a team was to bring people together, tell them to drop whatever titles they have, and to come in as people and to connect from that point and build whatever other experiences and expertise that they were bringing to the table on top of first, the connections with each other. So I really like that approach. It is really important to level the power dynamics because at the end of the day, patient engagement is all about teamwork among different types of people with different types of backgrounds.
I'd really like to explore, Linxi, your unique position within the network. But I think before we do that, let’s take a step back.
For those listeners who are still unfamiliar with Diabetes Action Canada, could you give them some idea about the different types of projects that you take on?
So perhaps if they would like to join, whether as a patient partner or an academic researcher or a clinician, they may have a better idea of the scope of the work and ways that they could get involved.
Tracy
The Diabetes Action Canada network actually started from a nationwide questionnaire and survey, talking to a bunch of different groups of people who interact with the health care system differently. So the reason I say that is because we wanted to make sure we worked with communities, areas that didn't have academic hubs to receive their health care. We wanted to work with groups that have been historically denied health care. We're talking about Indigenous groups as well as some rural areas that are non-Indigenous, but perhaps francophone. And we wanted to understand where are the gaps in care that they are seeing. Based on the outcome of that survey, we were able to plan research projects or themes that responded to the gaps. I'm going to list off a few that might resonate if people who do have people in their lives that have diabetes:
diabetic retinopathy screening was a huge gap people felt was in the health care system,
older adults living with diabetes and the supports that they would need for primary care, which is your family health care team that communicates your condition with specialty care. That was a big gap as well that we saw.
So these are some of the themes that emerged and then we planned some research projects and programs around it. Then, as I said, we're very nimble. We learned a lot. And over time we realized there were some significant gaps in people's health care needs that were not being addressed by our network. And so we then learned a bit more about what those are:
mental health and diabetes emerged as a real area of concern. And this was right before Covid. And it only became more clear during Covid that mental health and living with diabetes really needs to be a key area of focus for us.
same with diabetic foot care. For example, how do people who have diabetic foot ulcers, or at risk of diabetic foot ulcers, get screened? Because we are starting to see that this is a group of people that does fall through the health care gaps.
So we have programs with leaders of each of these programs that work with patient partners. But then we also look at a lot of research that's tangential to this:
I'll say there's a big clinical trials area within our network. Because I'm an organizational freak, I'm trying to put it all into its tidy little bucket. But sometimes clinical trials are looking at a whole whack load of stuff. So, for example, we have a group looking at type one diabetes and all of the devices that are available, how these devices actually work, are they getting to the right people, are there government programs to support these kinds of devices for people? So, you know, that's an area.
Another emerging area that really comes into play, especially post-Covid, is how do we promote health and wellness and better living with diabetes without reinforcing the stigma and shame. That's a very complex issue.
And when we look at healthy cities opportunities, how you can look at naturally occurring retirement communities so that people have the three things they need for longevity — community, nutrition, and health care? How do these three things come together to help people improve their lives if they're living with diabetes?
So that's our research. I want to say everybody fits tidily in the original buckets. But that's not true anymore. We're kind of open with some real themes, but we do support any research that has any patient partner component and diabetes.
Anna
Maybe Linxi, before you weigh in, could you also clarify Tracy,
Does your network initiate these project or do you put out calls that people apply to have projects focused on these research areas?
How does that part work?
Tracy
I would love to say that we are at a maturity point in our network where we can decide what research we would like to do. However, we are still very much dictated by the funding calls that are available, because the funding for this type of work is dictated a lot by provincial and federal initiatives. So we had a recent boom in type one diabetes research because type one diabetes had a huge marketing opportunity with the 100th anniversary of the discovery of insulin and then the hundredth anniversary of the first clinical use of insulin. So that was two years where they've got two infusions of funding from the government as well as from JDRF. So that does pivot a lot of our research efforts because those are opportunities.
We do have a desire from our patient partners to start the projects within. And we have some smaller projects where we've done internal questionnaires to understand the types of things and the types of research questions our patient partners are burning to know. We're just about to publish a paper with a list of about 40 questions that our patient partners have all come together and put down on paper and prioritized as things they would like to see us investigate. And I think that's a real step as the patient engagement research area evolves. And I think it's something that we're really excited to embark upon.
Linxi
I can jump in now with the perspective of, how do people with lived experience fit into this landscape of research? I think the easiest way for us to describe how we do this is to look at the research life cycle, because we really incorporate patient partner perspectives in every project and every program, but along different points of its life cycle.
So if we start before a research project has even come to life, let's say there's a granting call. We often do focus groups for researchers who aren't sure what they want to explore for a certain grant call, but we'll bring folks together with lived experience and say, hey, there's this grant coming up. We're thinking that this is a valuable question to ask. Does this make sense for you? Is it impactful? How can we modify it to make it more impactful for your life? So that's before a project has been even really begun.
Then we have projects that receive their grants and funding. We put together advisory groups all the time that help inform the direction and the delivery and the implementation of that project. We put the advisory groups together, we do the recruitment, we often facilitate these sessions as well. So in collaboration with the researchers as well as the patient partners, to really help bridge that gap between the folks with lived experience and the folks leading the implementation of that specific research project then. We also have the actual doing of the research, where we've had patient partners co-develop surveys, co-develop methodology and work with their research teams to get upskilled on how to do this research so that they can be a member of that research team as well. So not necessarily just in an advisory capacity, but really one of the fellow researchers doing the work.
And then that brings us to publication of the research. We have patient partners that have co-published with researchers. We support patient partners to go to conferences and presentations and be lead authors and lead presenters in this work. So that might look like training them and supporting them and putting the presentations together, but also finding opportunities and advocating for them to be part of these spaces.
In addition to publication, there's also what we think is the end of the research life cycle. But really it's kind of the beginning, which is that knowledge mobilization and translation piece. So now that we have this rich data and these findings, how do we get this information out and how do we get it out to the people that it matters to the most? Something that we've been really learning along the way, especially in the last couple of years, is that patient partners really are the agents of change that can bring this information into community, and we need to be working with them to co-develop knowledge products and campaigns and whatever they need to get this information out there, because it's not just the message that matters, it's the messenger as well. So that's that tail end.
After that, which is where we really close the loop on that research life cycle, is we support research teams to do an analysis of how the patient partnership went in the project. What could we have done differently next time? But most importantly, what do we discover along the way that can help inform future research? Because most of the time what we realize is, okay, this went great, but what if we went on this other tangent? So a really neat example of that is we have a project where we support a course in islet biology with the top grad students studying islet biology across the country. We work with their professors and patient partners co-write a review paper with these students every single year. Something that became evident was that it's one thing to write about the top findings and research that are happening every year, but what does this mean to the people that actually live with these conditions? What do they think about it? What do they think is important? So that doesn't fit neatly, like Tracy said, into any bucket.
But really, our job is to guide, facilitate, enable and build capacity along the research life cycle to incorporate the experiences and perspectives of those with lived experience.
Anna
That's so fascinating, and I have so many follow up questions… but what I'd like to hone in on since it is such a pressing and important topic, but also one that I find many of us don't have a clear answer to yet, and that's evaluation.
Do you have a set evaluation tool or approach that you recommend? Or what would you say to all of us out there that are trying to figure out how best to evaluate our engagement processes?
Tracy
I'm just going to jump right in because evaluation is huge for me. I think evaluation is so important. And Linxi will attest that I do request exhaustive tracking of all of our activities so that we can prove impact. And the reason this is so important is because there are a lot of networks out there. But how do we stand out? What are the things that people want to know that Diabetes Action Candidate does? And a really thoughtful analysis and evaluation is what sets us apart.
We actually work with a team within our organization. We have an evaluation arm of our team that's led by Dr. Valeria Rac, and she does an in-depth analysis of our network and looks at all sorts of key performance indicators (KPIs) that we are interested in and collecting to demonstrate value. So to give you an example of what these might be, there are:
Qualitative KPIs that we collect — like how are people enjoying working with the network? Do they find that the supports that we provide are useful?
More “hard” KPIs — like our publications, our grants, how often we meet with policy decision makers.
Influence on practice and policy — One of the main goals of the SPOR program, not just Diabetes Action Canada, but the SPOR program at large, is to influence practice and policy to change health care delivery. So we have to know how that's happening. Are we meeting with the right people? Who are those people? Are those translating into actual tangible change or not? Or maybe it's the beginnings of change.
So we actually go through a very in-depth analysis. We are on our third round. We have done one at year three, which was our baseline. It gave us time to set up the network, understand what we wanted to do, and then understand how we can support our membership. That's where where our year three started. At year six, we did a comparison to see how we are performing. And then this also came in line with our funding opportunities. We had an opportunity to actually use that data to reapply for funding to CIHR. Now we're planning to do another one in year nine, and that one will also inform what the next steps are for our network so that we can learn what we're doing right, adjust what we're doing wrong, and ensure that every moment that we are in operation, we are following what we have set out to do, which is to help those living with diabetes.
Linxi
I'll add that that's the high level, network wide perspective, but evaluation also occurs at a project/program level. What that looks like for patient engagement in practice is that we have a variety of different advisory groups or patient circles (as we call them) to inform our network. So not necessarily just for a project, but we go to them on a regular basis and say, this is what we're thinking of doing at DAC. Does this make sense? Does it land? Or we go to them and say, what are we not doing that we should be doing? Recently we launched a new program. But before launching it, we were building an evaluation plan and had our key performance indicators for what success look like for us for that program. But then we went to our patient partners and said, okay, well, this program is actually for patient partners. So what does success look like for you? And I think that's really important because we didn't ask them how would you evaluate this. Because that's really not an accessible question. We asked them, what if you could imagine yourself a year later and you participated in this program, what would make you happy? What would make you feel like this was a worthwhile spend of your time? What would make you feel like you could now go on to do bigger and better things? Because you were in this program and we distilled all those findings and worked with our evaluation team to now also create patient led KPIs for evaluation of this brand new program.
Anna
Are you able to share any or what some of those key indicators are of what makes a successful process?
Linxi
Absolutely. Something we've heard over and over again is patient partners want the ability to have transferable experience. So it's one thing to be a patient partner for a research project. But how do I talk about this in the outside world? How do I talk about this if I'm a student? How does it help me land a job if I'm retired? How does it help me land a spot at my next speaking gig that I do as a hobby? How do I put it on my resume? How do I tell people? Often I even get questions like, how do I tell people without outing myself as having diabetes? I'd like to talk about the skills that I'm building, not necessarily just focusing on my condition and my disease. So that is one metric of success.
Another thing that we hear all the time is the actual experiential metrics of success. So what does it feel like to be part of this program? Do I feel valued? Do I feel respected? What does respect look like? How am I an equal participant? Or how do I have equal ownership in the success of this program? How are you not talking down to me but we're working together to make this a success? And another thing that we also hear is how can I learn something while also contributing to this work? Which I think is really important because at the end of the day, while I understand why we call it patient engagement, I'm a huge advocate for calling it patient partnership because partnership is a two way street versus engagement is a unidirectional relationship. So if it's a two-way street, how can we ensure that patient partners aren't just giving but they're also taking?
I'll just give an example of what that looks like. When we used to ask patient partners to apply for certain opportunities, we used to ask the typical survey questions of self identifiers, EDI metrics, and then ask people for their experiences, etc. But what we heard is that just because people had different intersecting identities didn’t mean that they wanted to bring all of those to every single project. So now what we do, and it came from evaluating previous programs and calls, is we actually don't ask the surveys at all. We ask two questions on our applications:
What do you hope to bring to this opportunity? And we give people examples of like, you can bring your communities, your volunteer work, your work experience or your lived experience.
What do you hope to take out of this opportunity? We ask this so that we can manage expectations from the very beginning. Maybe they want skill building, maybe they want community, maybe they want to just relate to their diabetes better. But at least we're managing those expectations from the very beginning. And that allows us then to evaluate at the end. People wanted to get one, two, three things out of this. Did we deliver? And we're able to survey them at the end.
Tracy
I can comment on the bigger sort of academic review of our impact, because I know there are two sides, right. This is why Linxi and I are such a good complement. She's always thinking of the patient partners, their perspectives, and their experiences within the network. I'm also thinking of the high level, how do we re-fund or keep our network going and demonstrate impact so that people who are deciding the fate of our organization have the tools they need to make a good decision?
We do publish our evaluation work. There is a methodology paper out that was led by Dr. Rac, as I mentioned, that is available on PubMed. We can also send a link that goes through the process of how we evaluated the network and the types of information that we collected. A second publication that is going to be coming out soon is a reflection on year six. Things like, what does it look like? How did we improve? And then when we do our year nine evaluation, another publication will come out.
We also did a really in-depth, academic study on our patient partner experiences that looked at both quantitative and qualitative data. This was a real eye opener about the things we're doing right and the things that we're doing wrong. We got so much data — pages and pages of data. From that we prioritized and made changes. But we continue to evolve. We can't turn a switch and change everything [at once]. But we do keep those things in mind. We do say, okay, you know, this type of person needs this kind of support. So then we have that in our arsenal so that when we do our patient engagement we are aware. We're working through a handbook right now to really answer some of the key questions. Because, you know, I live and breathe Diabetes Action Canada, I can speak about it very clearly. I know a lot about what we're doing, but that's not the case for some of our patient partners who are entering into our network at various points — like they might be entering as a research project, or they might be on a certain [committee]. So they might not know the breadth of information that they would want to know in order to communicate about our network, and nor would they want to speak about it confidently. I find that people are a little bit intimidated because they feel they don't know enough. So this is something that we had learned as an opportunity to improve. So that is also going to be a published paper in the next couple of weeks. We do try to make sure that we balance the two perspectives. We balance the academic needs and then we balance the people's needs.
Anna
I really appreciate all of the accessible reasoning and the framing that you both share. That helps people better think about what it is that you do and how they can apply it to their own work. And I really liked how you said that evaluation is also about helping better understand where it is that you stand out as a network. Anyone can apply that concept as well to where they stand out as a research group or an organization.
I'd love to hear more about where you guys see your organization is standing out.
I think maybe Linxi, could one of your answers pertain to the position that you hold? I know it's very unique and also very important as well for others to think about incorporating within their organizations or research programs.
Linxi
So a biased answer, but also objective answer would be that I really do believe that we stand out in the way we do patient partnership, both in the breadth and the depth of how we do it.
So you spoke to my position existing. My position is lead of patient engagement, lead of patient partnership. It's really important to recognize that this work is labor intensive. It requires intention, time, skill. You need someone dedicated to that job to really deliver on that. I think there's emotional labor that goes into doing work like this as well as sometimes I think we forget or we underestimate that there's a lot of skill and preparedness that needs to go into this as well. So there’s one thing — you're dealing with people's vulnerabilities and stories, etc.. Absolutely. But there's also a lot of community building and community engagement principles and consultation principles and facilitation that goes into this, which is very hard to do off the side of your desk, because they all take a lot out of you.
In having a position dedicated to this work, it adds capacity back into the system of the network to keep delivering on the research that we need to be able to bring patient partners in. It's very much a chicken and the egg conversation, right? We need patient partners to do this great research, but we need great research to bring the patient partners in.
I think that's why I mention also the breadth and the depth at which we do this work. We have breadth in the type of research opportunities that we provide folks with lived experience, but also in how people can get engaged:
people can get engaged one time for an hour or,
they can go onto a project that has a recurring commitment for three years;
they can learn how to write a paper, or
they can learn how to work their zoom;
really, there's a menu of options that allows people to pick and choose how they can best contribute for whatever given point in their life they're at.
And then on the depth of how we deliver on patient partnership, I think it really speaks to our original conversation that we had at the beginning of this call, which was that we're really looking to build capacity not just for those with lived experience, but capacity for researchers, clinicians, knowledge users, decision makers to be better able to engage with patient partners so that their work can be better responsive to their needs. So that depth of preparedness tools and capacity building, I think, really makes it stand out.
Anna
Maybe Tracy, before you chip in… Linxi, I hope you don't mind me sharing, but it's on the Diabetes Action Canada website. So from that, I assume it's public knowledge. But something else that stood out to me about your position too, is that it says that you began as a patient partner within the network, and through that also evolved into the position, which I thought was really phenomenal as well.
Linxi
I'm still on the project I started out with, actually. I came to Diabetes Action Canada to make sense of my own diagnosis. I live with diabetes and I've worked in research and community engagement in my career before doing this work, and I just wanted a way to give back and meet other people like me because I couldn't make sense of essentially the biggest life change I've ever gone through. So I was hoping to give my research skills and time and just meet some cool people that I could ask questions to once in a while. And that grew into deeper involvement in the research, and when the job opportunity came up, deepening my commitment with DAC.
I think it also speaks to that — and I do want to distinguish this because sometimes what we tend to do out of good intention is we put patient partners in staff roles, but without really setting them up to succeed as staff. I think DAC does a very good job of not doing that. Patient partners are compensated at patient partner rates and they have patient partner scopes of work. It's different to be staff. As a staff member you need to have a certain level of experience, skills, support, compensation, and training opportunities. Those are two very different buckets. It just happened that I moved from one bucket to the next because I could fit into both. But I do want to make the delineation that it's important to differentiate between patient partners and staff.
Tracy
If I can just add to that. I do recall distinctly when Linxi came to my first focus group. When we started, it again was very much a learning experience which Linxi was in. I used to run an engagement because we didn't have the staff at the time, and I remember thinking I was so impressed by what Linxi had contributed to the conversation. I just wrote to her privately in the chat and was like, do you want a job? And then I forwarded her the job description. I mean, it was a lot more intensive than that. There's a huge hiring process that goes into these things, but you can definitely pick up on the skills that you're looking for in this kind of individual. It's a very niche role and it can't be filled by just anyone. You have to have the balance of the academic experience, the ability to relate and communicate with different people depending on their education level, their background, where they live, their language. It's one of those things that… I saw something in Linxi and I was like, oh my gosh, if we don't jump on this, I don't know if we'll ever fill this job because we'd already had some troubles finding the right person. So I think it's one of those things where you've got somebody who really demonstrates the values and the commitment, and you just want to make sure that you can nurture that.
Anna
Thanks so much for further clarifying your role, and then also pointing out the importance of not just plopping a patient partner into it. Rather, it’s important to recognize that it's a patient partner who's bringing the patient perspective, but now that they are a staff member they also need all of the supports and fair compensation that comes with that as well. I think that could be a podcast in and of itself. For season three, I'm going to be focusing on patient partner innovations. So Linxi, Tracy, I might be knocking on your door then as well. Tracy,
Are there any ways that you would like to share that you believe that Diabetes Action Canada really stands out, that we haven't mentioned yet already?
Tracy
We have some excellent research projects that have been completely directed by our patient partners. I'll really speak about one because that one is, I think, one of our most impactful research projects. It's looking at a multiple complications associated with diabetes and how we can make it easier for people who experience or historically experience these complications, to get better screening, management and treatment.
So the investigator that does all of our evaluation, Dr. Rac, also leads a program in diabetic retinopathy screening and understanding how people who live with diabetes can have their eyes screened at more regular intervals, and how we can actually remind these people that they have their screening due. That was something that wasn't really done before. People just had to keep track of their own eye screening. And then sometimes, they’d wake up one morning with a detached retina and had lost their vision. This is a real risk and a real fear of people who live with diabetes. So we wanted to understand why people are not getting their eyes screened.
We also have another project by Dr. Joyce Dogba that really looked at why certain groups don't just don't get screening. So we look at equity denied groups or newcomers to Canada or groups that might not have the same trust in the health care system to see what the barriers are. We learned what those barriers are. We customized programs so that people can get their eyes screened. Then through the work that Dr. Rac is doing, she's also making it more accessible within communities. So how do we then get our eyes screened in community centers? And then how can we layer on other complications screening? Like, how can we then start looking at feet to make sure that feet aren't experiencing ulcers that might lead to a festering wound that could lead to a lower limb amputation? How do you coordinate these complication management type services in one place so it's less burdensome for somebody who already might not be connected to a physician, or might not be connected to a community care center to get the screening that they need in order to avoid these very life changing and also high cost health care issues?
This is one of our biggest impact projects. And I think having something that's completely driven by the patient partner perspective, really looks at the gaps in the system, and then tries to fill those gaps with areas and opportunities where people interact the most with the health care system, is one of the ways that we've really shown how we can pull together all facets of our network into one impactful pathway.
Anna
That really is impactful! In everything that you share, that's what really stands out — the fact that there's so much mindful innovation going on within your network, and it's always bringing it back to how to better the lives of patients. So for anyone out there who's listening, I'm sure this is the burning question that they have right now:
How does someone become a member of your network and what are the benefits?
Tracy
I can start with some of our membership categories, and then I'll let Linxi speak to our patient partner membership. So again, when we started we had very defined membership categories. You could only be a researcher with an appointment at a certain level of university and so on. And then you realize that in the real world that doesn't always work. And so you have to broaden your scope in order to get all the questions answered. So now we have four levels of membership (Linxi will speak about the fourth):
Researchers: people who are attached to academic settings that can lead research projects.
Knowledge users: that is a very misunderstood term. We stick with the CIHR definition of what a knowledge user is, rather than somebody who takes the research outcome and applies it in their everyday job. So how do we get the knowledge users involved in our network more? So that's people who decide on how policy is written, are actually delivering health care, are in community settings delivering health care, and outside of an academic health care setting.
Trainee: individuals who are just embarking on their research career under the supervision of a researcher. They are likely going to be the pioneers of the next level or the next phase of patient-oriented research. Where we see patient-oriented research as being an ingrained and integral part of all research going forward. So this is us helping to build up towards that through our training levels.
So what are the benefits? I guess when you have a network like ours, where we do really require our members to be a coalition of the willing who really want to interact, they start seeing value because they see it through their research programs. Four examples of benefits that come to mind are:
We have certain programs within our network that we support with staff. So Linxi is a great example. Our patient partnership program, they have access to Linxi. Linxi works with patient partners. She can help guide the process. She can even facilitate some of the work if there is in fact newness or discomfort in the research group. They don't necessarily want to embark on their own.
We also have a knowledge mobilization, implementation science and evaluation program, which is very long winded. We probably should shorten that name, but we have a staff member there who really helps people with their knowledge mobilization plans. It's one thing to do the research. It's another to move that research out of an academic setting. How does that look and how can you plan for that? They do sit down with our research teams and help plan some of that work.
We also have a digital health arm where we look at how we can best use data collected from family docs. A lot of diabetes is managed at family doc levels. How do we take that data and use it to help us plan for better research in that area? Primary care is a huge, interesting area that's very underutilized because the data that sits there now is not necessarily accessible and people don't know how to use it yet. So we're really trying to help use it and we're helping our researchers use it.
We also have a communications lead. So we have somebody who helps people translate all of that very dense academic work and put it into the spaces of where people might interact with it. Krista Lamb is who we work with. Kris is amazing at helping us take all of this really complicated work and put it through opportunities like our social media, as well as writing things like op eds or communication strategies and so on. Through that we definitely have a full picture of how we can communicate our successes better. And this is available to all our researchers as well.
There's also other things that people might like, like the listing of Diabetes Action Canada on their CV. That's where the value comes back to patient partners. We also have opportunities to network, build capacity in the area, and then connect people with different groups that are doing similar research.
One of the ways that we do demonstrate value is if we see two different people working on the same project, we'll encourage those two people to work more closely together, and get a better project together. So there's less competition, more collaboration. This is a really important part of the network.
So that is for everyone else. But it has its own value to patient partners which I'll let Linxi speak to.
Linxi
The fourth category of membership for Diabetes Action Canada are the folks with lived/loved experience — so the patient partners, which is essentially anyone that has a connection to diabetes, whether it's through their own selves or someone that they care for or love.
At the very end I'll talk about the logistical aspect of how you join, and we'll share that link with this podcast as well. But let's say you do sign up on our website. Really, what you're signing up for is to be aware of opportunities, whether that's opportunities for training or research opportunities or advisory opportunities, conferences, etc. You're expressing an interest in getting to know more and getting upskilled in this area and in contributing. It doesn't mean that by signing up you're committing to any project or any focus group. Absolutely not. You're just committing to knowing more and potentially raising your hand up in the future to something that either applies to you or you're very interested in.
Once you have joined through our website, you start to get notices and notifications for opportunities — training opportunities, webinar opportunities, community building ones to meet other patient partners and other people in our network and see how to build that capacity for engaging with the research system.
I think there's the baseline benefit that all our patient partnership work is compensated. We believe in fair work and we have a compensation policy and governance policy.
But really, I think the benefits, speaking as someone who started off as a patient partner, for me there was the benefit of community building. I met other people I never would have crossed paths with before. And that's not just other patient partners. That's also people in the health care system. Many of us are what we call two-fers. We wear two hats. We might live with diabetes or care for someone with diabetes, but we also work in this area. And meeting other two-fers has been amazing. And I know it's a shared experience of many of our patient partners.
Additionally, there's the upskilling and capacity building benefit where you get to learn more about the research system, the research process, what's going on out there, and then you get to contribute.
Some folks aren't ready to contribute yet, but they want to know more. There's opportunities for us to be able to provide that benefit. Then there's also the benefits of publishing, presenting, and exploring questions you might have wondered about for a really long time.
We're also trying to innovate on what other types of value we can provide our patient partners. Something that we're piloting right now is providing a one pager of resume, LinkedIn and interview descriptors for our opportunities. So providing people with scripts and points on like — what did you learn here? How can you use this for your future opportunities? We're also exploring how to partner with other organizations to see if we can exchange patient partners at our conferences, widen people's worldview, give them opportunities to network.
Something that I often get asked about is — can I just sit in on a rounds webinar or some sort of conference that might not have anything to do with me since I never went to university and I'd love to learn? Absolutely! If there's a way we will make it happen. We'll figure it out.
So the value, I think, can really be distilled into two words, which is the value of convening and capacity building:
We convene folks that might have never intersected before to create some beautiful chaos that leads to really cool things happening and
We build capacity for everyone involved in this system to do better work and to better respond to the community's needs.
Throughout all of these four types of membership, it's actually quite easy to join. And the reason it's easy is because it used to be harder but we listened to our network and now we made it easier. We have a signup form on our website where you choose the category that applies to you the most. We understand there’s many two-fers out there. You might fit into more than one category, but you just pick the one that feels like the best fit. There's a couple of questions. The form takes no more than 10 to 15 minutes to fill out, if you're taking your time. There's example answers for everything on there. It's available in English and in French, and once you hit submit, someone from our team gets back to you shortly. You're put into mailing lists, and you're provided with the packages of information that you need. You also meet all the humans that are behind the network that could support you in your work. So we'll share that signup form with this podcast as well.
Tracy
Linxi, I'm going to say that we did listen to our membership and we let people pick more than one category because the two-fers were were very clear. They wanted to pick more than one. So now you can pick as many categories as you feel best suits your needs.
Linxi
Perfect! As a two-fer, I feel seen. I appreciate it.
Tracy
Yes, exactly right. We had left it. We wanted it to be more binary. We heard that wasn't good enough. So now you can choose whatever works for you.
Anna
I love the depth of all of your answers, both of you. And also your ability to scale it back and say, this is the depth, but these are also the overarching categories as well, so people can compute what they'd like from that. I also love what you had said, Tracy, about less competition and more collaboration. And that's something that I've been really focusing on as I develop my own research program as well. One of the things that I love the most about patient engagement in research is that everyone in the sphere is truly in it because they want to help better people's lives. So it's great that you've created a space that can help people move into that mindset more and more and think about how they can we work together to achieve outcomes. So that's really great.
I could keep talking to you forever, but in the interests of time, I think I'm going to ask you two questions. Feel free to answer one or both or none.
Is there anything else about the network that you feel you have not spoken about yet, and are there any parting words specific to patient engagement in research that you'd like to leave people with?
In terms of maybe some ideas that you've been percolating or any key applications that you'd really like them to think about for their work.
Tracy
I can start! I'm going to finish this podcast and then be like, you know what, I can't believe I didn't say A, B, C, and D. But what I will say, which is what's come to mind right now, is sort of like a final thought, and consideration of what we need to know about patient engagement research. I've been working in the hospital system for 20 years. I sit on many different committees outside of my job within Diabetes Action Canada, and I always hear this from people. It's that patient engagement doesn't apply to my research. And I always think, why? Why would you say that? Because I'm a basic scientist. I work with data. I work in a wet lab. I work with mice. And I constantly challenge people with this because I always think about, how do you take what you do and make it relevant to the people who will actually benefit from this research? Because in the end, all research has to benefit the community, whether it be in a niche population, whether it be in a disease specific area, whether it be in a population at large.
So without really understanding how people will use the information that's being generated in a research setting, how that research outcome is going to benefit people, community at large, I don't necessarily think researchers have a good sense of what they're doing. I think that what patient engagement does is it centers people, gives people the skills to actually communicate what they're up to, and then helps people understand why they do what they do. Even if that’s all that patient engagement does for people, I think it can help immensely.
So I always challenge people when they say that to me because I think, maybe I'm a little bit overcharged on the patient engagement piece, but I don't think you can conceivably say that you're doing research in Canada and patient engagement doesn't apply to you. I think it applies to everybody. It’s just how you decide to apply it that's different. And I think that's where you need to start working with groups like ours or other other patient-oriented research networks to find out what patient engagement can do for you. I'm not expecting people to figure it out on their own. I'm expecting them to do the work to help help figure it out.
Linxi
Tracy jokes that if we each had a dollar for every time I ask, so what, we'd be very wealthy. But truly, I do think that patient engagement helps us answer this. So what? Sometimes the why we do our jobs is very clear. Maybe we had a role model when we were younger. We were really inquisitive. We like to challenge things. We love research. But what? So what of the work, right? If you're going to sit in front of someone with diabetes, how is this going to change their life? Maybe it's not going to change their life until 100 years later, but you should still be able to have that conversation with them.
I think that this brings me to my takeaway, which is we really should not underestimate the experience, wisdom, and knowledge of those with lived experience. While they might not speak the dialect of research, trust me — people with diabetes, we're researchers every single day. There's 48 something factors that impact our blood sugar every single day. That experiment never ends. We're very good at isolating variables. We're very good at testing hypotheses. We analyze data all the time. It's just about being able to talk about that in a way that both parties understand. So sometimes, even though we have the best intentions, we don't share certain research opportunities with patients or patient partners because we think, okay, well, they won't understand this and it's not relevant to them. They will understand it. It's just about how we communicate.
I think that brings me to my final point, which is that we should really share the ownership and democratize how we do patient engagement. You can have the best intentions, but you might not be the best fit to run a focus group. That's why networks like ours exist. That's why we have support on: how do you communicate your findings on social media? How do you do knowledge translation? How do you do focus groups? We have capacity building and stuff that can support you in that and help bridge that gap. So that we can bring people with lived experience to make your so research much clearer and better. And 99 times out of 100, everyone walks away having learned something new. Not just the patient partners, but the researchers and the clinicians and us as well.
Anna
Thanks again, Tracy and Linxi for coming on today. I've truly enjoyed this conversation! As we wrap up, I'd like to remind our listeners to please check out our website asperusual.substack.com for resources from today's episode and interactive transcripts from this and previous episodes. While you're there, remember to subscribe to our newsletter to receive updates about new episodes as well as exciting news. You can also access and subscribe to this podcast through Spotify, Apple Podcasts, or wherever it is that you download your other podcasts from. Lastly, if you'd like to contact me with feedback or episode ideas, please shoot me an email at anna.asperusual@gmail.com.
Thanks so much for tuning in! Until next time, let's keep working together to make patient engagement in research the standard or as per usual.