TiHS Episode 46: Ibukun Abejirinde and Nancy Clark – compassion and virtual care for Newcomers and Refugees

Technology in Human Services

Welcome to Episode 46 of the Technology in Human Services podcast. In this episode I’m joined by Ibukun Abejirinde and Nancy Clark to talk about their work looking at how to re-imagine digital or virtual health care through a compassionate lens, focusing on Newcomers to Canada.

In an article for Canadian Diversity Ibukun wrote that it is “relevant to explore if and how the digitization of health care impacts the experience of compassionate care for marginalized groups, including immigrants and refugees.” How do Newcomers experience virtual care? How do they experience compassionate health care in general? With a number of colleagues Ibukun and Nancy continue to work on this question as well as new lines of inquiry regarding the overall settlement experience and the role of digital technology in supporting the settlement experience and setting newcomers up for success. I think their research focuses on some essential questions that should impact the entire Newcomer-serving sector’s approach to digital transformation, hybrid service delivery, and how we can ensure that our virtual and hybrid services are equally compassionate, client centred, and ultimately focused on meeting the needs of our clients and communities.

Some of the questions we discussed:

• Ibukun, in your article for Canadian Diversity, you wrote that it is “relevant to explore if and how the digitization of health care impacts the experience of compassionate care for marginalized groups, including immigrants and refugees.” How do Newcomers experience virtual care? How do they experience compassionate health care in general?
• What lessons have you learned in your study? What recommendations do you have for health care practitioners as well as settlement practitioners?
• What kind of investments are needed to ensure that virtual care is compassionate, appropriate, equitable, and accessible for Newcomers?
• Access is a huge issue in many areas, such as language, transportation, systems navigation, etc. But when it comes to virtual care, digital access is something we need to talk about. Where does digital inclusion fit into a vision for compassionate virtual care for Newcomers? What needs to be done or considered?
• Your work fits into an ongoing body of work and I’m curious where you see next steps for what you’ve learned and have been sharing. For example, recently Access Alliance with other partners published A qualitative study on the Virtual Emergency Department care experiences of equity-deserving populations. They found that “Patients from equity-deserving populations described negative past experiences with ED in-person care, which included recounts of discrimination or culturally insensitive care while waiting to see the ED physician or nurse. Conversely, participants found the Virtual ED to be a socially and culturally safe space since they could now by-pass the waiting room experience. However, virtual care could not replace in-person care for certain issues (e.g., physical exam), and there was a need for greater promotion of the service to specific communities that might benefit from having access to the Virtual ED.” They also found that there were digital inclusion barriers to accessing the Virtual ED, but that patients from equity-deserving populations might still choose the Virtual experience because of poor past experiences. What does it tell us about the state of care when, even with barriers and imperfections, people from equity-deserving populations would choose a digital experience over an in-person experience for their health care?
• Where do you hope to see your work go from here?

Some useful resources:

• Beyond Technology, Beyond Healthcare: Promoting Equitable and Integrated Supports for Newcomers and Refugees in Canada project website which also credits other project team members
• “Digital Crossroads” Comic Book
• Settlement Journey Map
• Ibukun on the Good Tech, Compassionate Healthcare Podcast
• Canadian Diversity article by Ibukun and colleagues: Beyond Technology: Digital Health Compassion for Canadian Immigrants and Refugees

Machine-Generated Transcript

What follows is an AI-generated transcript of our conversation using Otter.ai. It may contain errors and odd sentence breaks and is not a substitute for listening to the audio.

Marco Campana 0:00
Welcome to Episode 46 of the technology and human services podcast. In this episode, I’m joined by Ibukun Abejirinde and Nancy Clark to talk about their work looking at how to reimagine digital or virtual healthcare through a compassionate lens, focusing on newcomers to Canada. In an article Ibukun wrote for Canadian diversity, she wrote, it is relevant to explore if and how the digitization of healthcare impacts the experience of compassionate care for marginalized groups, including immigrants and refugees. So how do newcomers experience virtual care? How do they experience compassionate healthcare in general? With a number of colleagues, Ibukun and Nancy, continue to work on this question, as well as new lines of inquiry regarding the overall settlement experience in the role of digital technology in supporting the settlement experience, setting newcomers up for success. I think their research focuses on some essential questions that should impact the entire newcomer serving sectors, approach to digital transformation, hybrid service delivery, and how we can ensure that our virtual and hybrid services are equally compassionate, client centered and ultimately focus on meeting the needs of our clients and communities. I think you’ll enjoy this conversation. Welcome to the technology and human services Podcast. I’m going to let you both introduce yourselves and and a bit about your work before we kind of dive in. So Ibukun why don’t we start with you?

Ibukun Abejirinde 1:18
All right, thanks, Marco, very lovely to be in this conversation with you and Nancy. So my name is Ibukun Abejirinde. I’m a scientist at the Institute for Better Health, which is Research and Innovation Hub within Trillium Health Partners. And I’m also an assistant professor at the Dala Lana School of Public Health University of Toronto. So my work is really applied research, where I ask very interesting questions with the aim of addressing complex healthcare problems, and I focus on health inequity digital technology and what these mean for marginalized populations and how they access and experience quality healthcare. A lot of my work partners very closely with patients and caregivers, policy makers, community organizations, researchers from different disciplines, and I kind of focus more extensively on immigrants and refugees, racialized communities and older adults. And so that’s sort of the hat I’m wearing coming to this conversation. This conversation.

Marco Campana 2:24
Awesome. Welcome and thank you for joining. Nancy. Please introduce yourself and your work.

Nancy Clark 2:29
Hi Marco. Thanks for the intro, and thanks to Ibukun. Yeah, I’m an Associate Professor at the School of Nursing at the University of Victoria in Canada, British Columbia, my program of research focuses on refugee mental health. I’ve been a mental health clinician for about 30 years, so most of my work has been in clinical practice. I came to academia later than most people, and I really try to focus on the issue of equity and why people are experiencing barriers, and how can we make the healthcare experience equitable but also a friendly place to go to. So I think a lot of people sometimes talk about access and equity, but we also need to think about the quality of care. So what is, what is caring? How do we care for people like Ibukun? I’m interested in what we call, what we might categorize as marginalized communities, but looking at the structural pieces of that. So what are the policies, the bigger pieces that are sort of creating those barriers, but also what works, and why does it work for some people and not other people? So that’s sort of me in a in a nutshell, and really interested in advancing mental health outside of the mainstream. So looking at the social determinants of mental health, such as poverty, housing, social support, and for me, being an intersectionality scholar, gender is always at the forefront of how that works and how that plays out in terms of power relationships and things like that, so that that’s sort of my work. Awesome.

Marco Campana 4:29
Thank you both very much for joining. And that notion of intersectionality Nancy is something I think will be a thread through this conversation. Because, again, as we mentioned before we started this, this conversation is about about health care and virtual health care and equity and health care and digital equity, but it, but it also is where it intersects with newcomers in particular and other equity deserving groups. And I think that that thread throughout is where people who are going to be listening are going to be quite interested. So I want to set the stage a little bit, because we came at this originally, I became out of your out of two. Projects, right? So the first was looking at a project to reimagine virtual healthcare with a compassionate lens. So not just how do we do virtual healthcare, because the mechanics of that you can find everywhere, but how do we do it compassionately, in particular with newcomers to Canada. And then that work, as you explained to me, has evolved into new lines of kind of questions and inquiry, looking at the whole did the whole settlement experience, and where digital technology fits in, supporting that experience and ensuring that newcomers are set up for success. And so the so again, the first project kind of focused on virtual care, but you’ve expanded beyond that. And so I want to kind of set the stage for people in my audience who are more probably on the settlement side. And let’s talk a little bit about what you mean, or how you define virtual health care, and what does it mean to provide compassionate care in that setting. Okay.

Ibukun Abejirinde 5:54
Thanks, Marco, so the way we how we came to this work, was really within the context of the pandemic, and the fact that public health restrictions meant that people could not access healthcare. Most people could not access healthcare in the brick and mortar way, and everybody had to go rely on digital technology so broadly when we’re talking about virtual care, it’s a term that describes all forms of remote interactions between a patient and their care providers or their circle of care, and using digital technologies, information and communication solutions to support service delivery in healthcare, enable it, provide it, deliver it. So it includes things like remote monitoring technologies, having a conversation or an appointment with your clinician over the telephone or over a video call, even messaging, right? So sometimes you have this portals where a patient could send messages about the way that we failing communicate with a nurse practitioner provider over a portal, so emails, text message and all of that falls into virtual care. But for the particular projects we’re going to speaking about today, we kind of honed in specifically on video and telephone clinical encounters, because those were the most one the two modalities that were mostly used during the pandemic, but also by newcomer group. Yeah, so that’s that’s on virtual care for compassion. I think it’s such a complex term, and I did some work as part of this project to sort of understand how it was being conceptualized and defined differently. And I find that it’s it’s this very multi dimensional phenomenon that varies per individual, and individuals have varying expectations and experiences. But one source that I frequently go to that I think gives a very clear and straightforward answer on what does compassionate care mean? Is the Oxford Handbook of compassion science, and the way they describe and define compassion is that it’s a state of concern for someone else’s suffering or the need of someone else that has been unmet, accompanied by a desire to alleviate or address that suffering. But nobody really goes around talking about, oh, I had a visit with my doctor and it was compassionate, right? What we use are like proxy indicators and tangible descriptors of compassion care. So when you hear people talking about trustworthiness of the care or the way they felt that their clinical encounter had dignity embedded, or that they have a positive relationship with their primary care provider, or they felt respected, or that somebody was provided empathic care, all of that, those are descriptors of compassionate care. And I think what makes compassion such an important concept to dig into within healthcare generally, but also within the context of digitally enabled service delivery, is evidence is showing how intricately linked the concept of compassion and how people experience and operationalize it is linked to how they perceive care in general. So a number of interesting studies have come out regarding that. In fact, one recently published from a compassion lab in from the University of Calgary, where they they looked at the experiences of 4500 patients in 14 emergency departments across Alberta, and found that compassion was key to how patients rated the quality of care that they received. I think one thing that was very important, and I’ll probably hand over to Nancy to speak to this, is that study showed that women and indigenous patients reported lower compassion scores. South Asian patients report. Significantly lower ratings than white participants, and so it was showing that patients views were modified along demographic, cultural, ethnic lines. And for our study, we used our intersectional lens as well to unpack and make sense of how are newcomers experiencing virtual care on arriving to Canada and trying to navigate the healthcare system, and that became set the stage for our exploratory work. But I’ll let Nancy perhaps speak to intersectionality, how we conceptualize it, and what does this mean for understanding this work.

Nancy Clark 10:36
Thanks Ibukun, that’s a really interesting lens that you bring around compassionate care, especially when we think about the context of the healthcare crisis, the increasing migration, or lack of migration, that’s happening at the borders in the context of covid 19, and the fact that you drew attention to the role of virtual slash digital care in that context and where we are. Now, one thing that’s come out clearly during, I would say, covid 19 is, as you’ve heard, this sort of acronym, that it was a social X ray to see of where things are in terms of the disproportionate impacts of who is the most marginalized. And I’ll talk about intersectionality in a second. But one thing in that context that stood out for me, what you were talking about, was this notion of compassion, and I can’t help but think about also, sort of the other side of that, which might be burnout, in terms of what we heard, what happened during covid 19, and so how things started to crumble, which then impacted Those communities and populations that are racialized, that are newcomers, etc, etc. So there’s this big, broader, I think, structural piece, and that’s really what intersectionality, I think, if we could, it’s a very complex idea, but essentially it’s trying to get at, how do we disrupt and enable those structural pieces to make it equitable for all? And so that, you know, when we look at the UN Global Development Goals now, it’s like, you know, we don’t want to leave anybody behind, and yet, we’re looking at who’s the most impacted, one of the or sorry, affected by these structural processes that don’t work for everybody. So because of their unique social positioning, such as their ethnic background, their migration status, their literal literacy status. So the other thing that you mentioned was that women, I think you mentioned women and indigenous people, had lower experience of compassion. And that’s very interesting when you come at it from a gender based analysis, because typically, we know that women tend to be constructed as care providers, as people that can access resources and supports in different ways than Men and other genders, because of perhaps femininity or masculinity, and often those things are so. So it’s interesting because you specifically drew on women, but what we see in the bigger discourses in terms of forced migration and also resettlement is that the voices of men and their vulnerabilities are excluded, and so one of the things that we have to think about when we’re reading these kinds of data is to potentially not reinforce those marginalizations and potentially not reinforce stereotypes. IE, women are vulnerable, men are tough and strong. These are just very basic sort of ideas. But these notions prevail throughout and so when we think about constructing or CO creating, how digital technologies can really address some of those inequities, we have to be kind of thinking about, well, what do we already know that works and doesn’t work, and how are we sort of perpetuating or reinforcing some of those ideas within these new AI technologies and things? And I apologize if that’s a. An abstract idea, but it really comes back to, I think the essence of intersectionality is those identity constructs that shape the outcome, the health outcomes of people, and we can’t really disconnect, as you were saying, Ibukun the micro from the macro. And then one of our interests in this project is So, where is the mezzo in this where is the people that provide the care in our in our context, the connections that the primary care sector as well as the settlement sector have and who’s who’s doing what kind of work. And I really think that often, one of the big learnings for me was that the immigration and the settlement sector receives a lot of funding from our federal government, also from provincial funds to really look at supporting integration settlement and health, and often they are actually the first people or the first services that people receive. And so that brings us to then, what role does technology and digital health play within that sector, because if they’re the if they’re the first point of contact, one can imagine, then that, you know, like that, that might actually be more significant in terms of playing a role versus going to health, because that was one of our findings was that as a newcomer person, for example, an asylum seeker or a refugee, both under the umbrella of forced migration, those folks would not tend to access health. Right off the bat, that was one of the biggest things that we found was that primary care or accessing a community health center happens last so how can we forefront the the use of technology and health at the beginning, within the set, within the broader notion of resettlement and settlement context? So sorry, I went off a little bit there, a little bit winded, but really so compassionate care, then this is a really interesting topic, but I want to get back to that I would because I come from a critical orientation. I think we need to be able to operationalize compassion so that we don’t have the negative impacts of that, such as burnout and things like that, because we understand that resources have been constrained and that the when people access care, they usually access it with multiple comorbidities and very complex health issues. Yeah,

Ibukun Abejirinde 18:05
no, you’re absolutely correct. And I think from the interviews that we did so we spoke to 25 newcomers. And when I use that term, I use it very broadly to include economic immigrants, refugees, asylum claimants, those with precarious status, temporary foreign workers. So that’s the way we sort of pocketed it broadly. And when we spoke to 25 newcomers and nine service providers, settlement service providers, who provide primary care services, and one of the things that came out so strongly is more most of the providers we spoke to have lived experience themselves of being newcomers to Canada and while and on the one hand, that put them in a very optimal position to be able to meet their clients where they were at, to relate to them, to build that trust to develop the relationship quickly. It came at a very big cost to those providers at an individual level and even within the sector as a whole, at least from the primary care perspective, although I think, like it cuts across the sector as a whole, was that within the context of underfunding on the staffing, not having enough support at a systemic level for the settlement sector to provide these hugely demanding and very critical services, is that there was a lot of burnouts. That was the trade off, is providers themselves needed to go the extra mile to bridge the gaps that digital technology could not bridge, and that the system was not bridging, and so that came at an extra cost. So I appreciate the fact that you’re looking at the benefits on the one hand, but then at the expense of what? And I think that that’s something we need to keep top of mind.

Marco Campana 19:58
Yeah. I mean, I. Don’t accept your apology, Nancy, because I don’t think you went out of the scope. Because I think what you’re what you’re describing, is a broad, complex systems navigation for both those accessing care and those providing it. And the word for me, that always comes to mind when we have the and then and now, we’re layering digital on top of that. So forget the digital we’ve been talking about compassionate care probably for a long time. And how do you do it at the same the same time? We’re talking about the parallel processes of burnout. Virtual care layers something on top of a system and conversations and research that are still nuanced and undone and still works in progress and not undone, but works in progress. And so the complexity of that and then nuances. So as you described the difference, you know, there’s a lot of anecdotal or assumptions about the differences between men and women or ethnic groups. Forget about the diversity within those ethnic groups. So for example, if you can mention, you know, South Asians had bad experiences in Alberta. But what about nuances within those those groups? Or what about women from Afghan backgrounds versus Afghans in general, for example, right? The nuance in that care is something that is a huge conversation in our sector. And then, of course, the intersectionality. So you’re young, you’re a woman, you came as a refugee claimant, you’re living in poverty, and you’re, you know, et cetera, et cetera, et cetera. You start to layer all of those pieces onto it, and now we layer a digital version on which may or may not benefit you. Maybe you are digitally literate, maybe you’re not, and is your provider digitally literate? So when we’re looking at that whole, that whole mess, that system, that kind of approach, I think you’re, you’re talking about what we what we need to be talking about, and we will get to some of the practical parts of the conversation. But I think it’s important to look at that, on that on that level, to say you’re describing the health system that also describes the settlement system, right is that is, as Ibukun is mentioning people, people who are trying to figure this out, who are underpaid and doing things on the side of their desks, serving clients who they’re not officially allowed to serve because of eligibility requirements, but they must serve because it’s compassionate to do so for example, which is another definition of compassionate care, right? So I think that there’s a it’s a big conversation. I’m glad you kind of put it in there, because I think that sets some of that context as well, so that projects like these can start to address and answer some of them, the sort of more practical questions, but we always have to have in mind that we’re sort of, we’re doing it in this context that is an un unfinished work in progress that we have not resolved yet. So as we talk about compassionate care, clearly my question would be, well, if we’re doing all of these studies, where are those studies then being operationalized in the healthcare settings, so that it’s not a study that has to be done externally, but there are questions that are being answered internally, with with accountability mechanisms in place to ensure that we are embedding compassion into the the healthcare system, for example. So we won’t go down that road, because I think, obviously those are works in progress, but, but I want to, I want to take us back a little bit more to the specifics. So Ibukun you wrote in an article for for Canadian diversity magazine that the why, a little bit of the why, right? It’s relevant to explore if and how the digitization of health care impacts the experience of compassionate care for marginalized groups, including newcomers. So what did you find?

Ibukun Abejirinde 23:26
Big question and but very interesting. And the way I always describe this to people is be careful if you want to be a researcher, because sometimes you don’t find what you’re looking for. Sometimes you do find what you’re looking for, and it’s not what you thought you were looking for. And then sometimes you find what you’re looking for, and it’s much more than what you were looking for. And I think in our case, we fall into the last bucket. It was opening up this Pandora’s box. First off the bat, it was there were mixed perceptions and experiences of virtual care. And the findings were interesting. We did see that, you know, if we’re using this idea, which is very important, of layering and how one person is constructed and positionally located along different axes on a social scale, some patients preferred preferred virtual care. Others preferred in person care. But what was interesting was their social identities, of how far along Am I my migration journey, or the gender of is this someone who identifies as a woman or as a man, or their ethnic and cultural backgrounds, their comforts, digitally with digital tools, and also clinical factors like mental hits, health status affected how people perceived virtual care. And you could have the same person who would say, oh, in the beginning, you know, it was scary for me, because one of the things we did ask as part of the interview. Use was the first time you were told that you were going to have a virtual encounter as a newcomer. How did that make you feel? What were your thoughts? And what was interesting was people use the words of I was afraid. I was unsure. You know, it was weird to me. I didn’t know if I wanted to go ahead with the call. But later along the line, as they warmed up to being in Canada, how the healthcare system work, figuring out the relationship, settling themselves within their new context, they started having more positive experiences, because then they appreciated that it was convenient, that it saved them time, because they could then use the time. It was like buying back the time that you would take, taking the TTC, to go to the physical clinic. You go that and you’re going to look for work, or you’re working somewhere, you’re working multiple shifts, or you’re just staying at home, if it’s someone who has kids at home and they don’t have childcare. And so it was convenient, and it saved time, it saved cost, but there were also restrictions in where they could access virtual care, right in anecdotal anecdotally, the language is virtual care was universal and ubiquitous, but it wasn’t really ubiquitous for everybody, for refugees and asylum claimants, for example, or people who have a waiting period, although the waiting period was lifted during the pandemic, you are sort of streamlining to where you can go for care if you’re uninsured or if you don’t have the interim federal health coverage. So that had limitations to who they could see. I’ve talked about the temporal effect. So we did see that people who were early migration zero to six months, in some cases, up to a year. Virtual care was more was a more challenging pill to swallow initially, but once people started settling down, warming up, getting a sense of the system, understanding the trade offs and the options, then you know that we’re more open to it. One of the pieces of work we just finished is a comic that we co designed with a group of four newcomers based on the findings of this study, and we translated it to six different languages in addition to English, and I think you can include that in your show notes. Another thing that was interesting that we found was the trickle down effect, and it was actually that strand of findings that led us into the second project that we now call the beyond technology, beyond healthcare effects, which was their initial for most people, the initial overall reaction to virtual care had nothing to do with virtual care per se. So like I mentioned, people will say I was afraid, I was worried, I was unsure. And when we reflected, as a research team, we’re like, okay, like, it’s just a phone call. Why are people, you know, conceptualizing virtual care using that language? And when we dug in deeper, we found that their overall migration and settlement experiences, experiences in the pre arrival and early arrival stages, actually shaped and framed their expectations of healthcare in general. So for those who had very rough journeys, who experienced discrimination, social stigma, being gas lit, not being able to access housing support find a job easily, they translated and extrapolated these negative experiences to their expectations of healthcare. So it was more like you’re going to call me to have a conversation with me about my health. Who are you? You know, for those who are precarious status, is this going to be surveilled by the police? How is it going to affect, you know, my hearing, who is this person? I don’t know them. I can’t see them. So it was all that complexity. So we talked about how, you know, it became beyond technology. So that’s why the second project was beyond technology. Became beyond technology, because these were experiences that were used to describe virtual care that had nothing to do with virtual care, and to use Nancy’s language, we have to go to the more structural macro level determinants that shape these things. And I think the last point I will make regarding clinical findings is mental health was a very important modifier to how people experience compassionate care and virtual care, and there have been similar studies that found what we found, and that was the fact that even though, in general, most of everyone we spoke to did say that having a pre existing relationship with the provider facilitated a better virtual care experience, most people admitted that depending on the provider and The patient, it was possible for them to make the efforts to bridge the gap. However, particularly in those who had mental health challenges, it was very difficult. We did have one particular person who had established a relationship with her provider before the pandemic hit, she was going through severe mental. Challenges, which was actually influenced by social determinants of health. Her refugee claim had been denied multiple times, and her provider, pre pandemic, had been the one helping her navigate these complexities. And then the pandemic hit, and she was told, oh, all of your consultations with your provider is going to happen by the telephone. And she just went downhill. From there, she shared with us how this person who she had known prior became somebody that she didn’t know at all because she said she can’t see me, she can’t feel me. So how does she know exactly what I’m going through? So that that trust that had been established actually became broken because of virtual care? So yeah, I could go on and on about that, but just to give you a bit of the layers of the things that we discovered which then led us down to start this other project called Beyond technology, beyond healthcare. It’s

Marco Campana 30:51
interesting because, as you were speaking before this last example, I was thinking exactly about trust and rapport, because so much of health and even I mean, many social services have become very just transactional, right? And there’s there’s an expectation that you understand that, and you know that we’re going to have a conversation and I will tell you what to do next, or I’ll send you a prescription, or this 10 minutes is up, and you’ve moved on, because it’s and and for someone who doesn’t know that system, and in the context that you’re describing, comes out of a very hard experience, migration experience, and doesn’t have an opportunity to set up trust and rapport with that person, that transactional experience over the phone is fear inducing and anxiety inducing, potentially. But then it’s so fascinating to hear that even after you’ve established that trust and rapport, it can be broken based on the service modality alone. It’s the same person, allegedly, that’s that’s now long, no longer sitting across from you, but you’re having that conversation with that you had established a relationship with. And I wonder what does that mean for our systems of care? If, because that’s that, that’s a that’s a specific nuance, and it’s a specific group of people, but surely that those feelings in that experience must translate into other groups in society, which means it’s a bigger and even if it doesn’t writ large, it’s still a microcosm of an existing problem of some sort. So without delving into massive systems change, what is what does that mean for like as a settlement practitioner, let’s say, or a healthcare practitioner, I kind of already know this stuff, but I’m expected to be transactional in my approach. What can I do? Or what do you recommend people in those settings can do to at least create something a little more humane or or rapport building, or at least slow things down slightly in the process, to make sure that someone is comfortable and feels that compassion.

Ibukun Abejirinde 32:44
Nancy, do you want to Sure

Nancy Clark 32:46
this is my brain’s going all over the place. So Marco, one thing is that it’s not that people are not necessarily not doing anything it but I think, and, and it’s a hard question to answer, I think what I’d like to maybe touch upon is go back to the notion of pre arrival experience. And a lot of the time there’s this discourse that, oh, when people they’ve been granted refugee status, meaning they’re granted some security and safety, as defined by the United Nation High Commissioner for Refugees. And so with that, you know, notion of safety, there’s this tendency to forget what happened before people arrived, and it’s something that I think matters in terms of how we deliver care. So sometimes I think more education can be helpful in terms of what were those pre arrival experience? Because most refugees are residing in camps or host countries prior to them, waiting to come to Canada. During those experiences, there’s very little health care access. Sometimes there’s issues of violence, there’s issues of trust, so the disruption of war and the displacement already comes with these pre migration experiences. So you’re right. There are some sort of expectations post migration that I’m going to be cared for, looked after, etc. And then we have this bigger sort of discourse of trauma, and we look at it as a one point in time situation. It is not. It is what we found with research is about one in five people that have been affected by displaced dis. Placement related to violence of war experience, some sort of mental health condition. That does not mean that people go on to develop post traumatic stress disorder and that, you know, they’re going to be living with these conditions. What where it matters is in the resettlement context, is that what we know is that that context, in and of itself, can compound pre existing risk factors for mental health, what we call mental health, when I say mental health, there’s a distinction between a mental health condition or overall health promotion, social determinants, type of things. So one of the things that does compound risk is this notion of sort of how we’re treated, and that’s what you’re talking about, about experiences of discrimination, distrust, and I think I don’t have the answer, but I think that understanding a little bit more about the pre migration experience and context and where people come from, I’ve heard over and over again In different research projects with working with different migrant groups that it matters that the provider knows something about me. So in other words, the burden of responsibility for compassionate care should not be, should be on our health system to actually try to understand, you know, where people are coming from their situation, and there should be more flexibility. So compassionate care and virtual care can be seen as sort of these, one on one, inter interactions, but not necessarily. Sometimes it involves more than this sort of provider care. You know, care seeker person. What we know is that the majority of people experience severe language barriers, severe literate literacy barriers, as you mentioned already, with health system navigation and so one way where technology can be really beneficial is with mitigating some of the language barriers, and when we and this can be very tricky, because mental health is highly stigmatized, so it begs the question, what are our studies showing, and how is Mental Health sort of constructed when this is a highly stigmatized across, you know, cross culturally, globally and also within our own Canadian culture, you will not find people saying, Hi, I’m here because, you know, I have depression, or I Have post trauma, post traumatic stress disorder, what you will find is, I can’t sleep at night. So when we’re talking about compassionate care, it’s the burden of responsibility should be around looking at so what can we do to make to if you’re not sleeping at night. What is the root cause of that? Well, I have to travel two hours to get to work, and then I have to work 14 hours, and then I’m worried about not making enough money because I have to send money back to my family. That’s also what you know. So it becomes this whole really understanding and knowing the context and the situation of the person. And so when we think about developing trust, that’s that’s where I think it lands, is what do? What do I need to know about you, and positioning oneself as somebody that, how can I, how can I learn about what what matters to you, what’s important to you? They may be coming in because, you know, they’re for various reasons. Well, they’re anemic, but they’re anemic because they can’t afford nutritious food. So for me, that’s where I see that trust and that compassion really being operationalized, is if we can try to think about coming at it as you know, what do we need to know about this person and their context of why they’re here? And not to forget that what happened before someone comes doesn’t stop when somebody arrives in Canada, it’s actually it, it gets compounded. It’s a very complex situation. And yes, over time, acculturation, people get used to navigating systems, etc, etc, but, but that doesn’t also necessarily mean. That there, as you were mentioning, there’s more trust or more equitable access. So that’s sort of my response to some of the things that you’ve been talking about, and especially coming back to the notion that Ibukun mentioned that most of the providers in the settlement sector, particularly, have lived experience already, and so really paying attention to some of like that, should, should they take the burden of all of that like, like, really, as a society, we need to support those people and, and, yeah, in terms of looking at the broader, sort of the broader notion of, I always go back to the structure and and how sort of that social justice or distributive justice works In terms of equitable distribution of resources, so that we’re not just talking about virtual care and primary care, or we’re not just focused on the settlement sector, but really, how do we make sure that there’s equitable distribution of health resources and then recognition that there are differences between social identities and groups, but there’s also some similarities and things, and we also know a lot. So how do we implement what we know in terms of promoting equity, trust and better care?

Ibukun Abejirinde 41:33
Nancy, actually, I feel like you were picking my brain and answering that question, because the first thing for me, you know, when Marco asked that question, like, within the sector, what is the one on one thing? Let’s, let’s, let’s not try to make any policy changes or systemic shifts. The settlement sector is doing such a great job. I have to say, like, I have a lot of respect for settlement workers. You know, like I shared earlier, Nancy also acknowledged, now it’s the lived experience puts people in a great position to be able to understand preemptively, just because you’ve gone through it, many settlement sector providers can say, I kind of know what this person is going through. And so there’s a, there’s a great work being done there. But in querying that question of at the expense of what, what, where it’s burnout and it’s fatigue and it’s compassion deficits, there’s actually a term called compassion fatigue that comes out of the moral injury and moral distress when you’ve identified the need and you’re trying to address it, but because of all these other complexities in the system that you’re leaving with, you can’t address that need. And that’s something that we’re seeing happening with care providers all around, both within and outside the settlement sector. And so we, we started querying this idea of the need to advocate and support or engender systemic compassion. Because compassion has, currently, I think the conversation has currently been limited to the one on one interaction, and I think that there’s just so far that one on one interaction can go. We have to start looking at what are the systems and structures that enable and foster people to be able to deliver compassionate care at the individual level. So that’s one to what Nancy was saying about pre arrival work. So I think that one of the things that can be done is to really find a way, and I think this is a way that technology can help to expose newcomers. Again. When I’m using that term, I use it very broadly, immigrants and refugees to Canada, about the healthcare system and the social system, pre arrival, or area arrival. I know that you know, at least for economic immigrants, you will get this sort of blurb from IRCC when you’re coming in that says, here’s a pre arrival list. And there’s all these hyperlinks of, how do you find a job? How do you get a house? But there’s the health issues are usually silenced and not paid attention to. But what our research shows is that the gaps that the social system ends up not being able to meet the social determinants, they end up falling at the bedside of the clinician. So we talked about this concept when we’re looking at it temporarily is from border to bedside, structural determinants of health, social determinants of health, they land at the bedside of the care provider. So how do we handle these at an upstream level? And so I think there’s knowledge and expectations setting that can happen, pre arrival or early arrival, because when people manage their expectations or know what to. Expect. They don’t feel disappointed and let down, and that shapes their overall experience, right? So it’s, for example, you’re going to your doctor or your dentist, and they’re like, oh, you know you’re coming in, and you would just wait about 15 minutes and it should be fine. And then you go there and you wait for three hours. That already tankers your entire experience, even if you get the care eventually that you’re looking for. The third thing I wanted to talk is about data mobility. I feel like migration is about mobility from a policy perspective, you know, you can say what are the different factors that shape why people move, but I think that there’s an opportunity here, from a technological perspective, to look at what is the data, the information and experience that people are coming into Canada with, and how can we receive that information very early in their journey, so that before they have that first conversation with an intake worker or with a physician or with a social worker, somebody already knows the backstory without asking them to rehash it all over again and possibly re traumatizing them. We don’t have very good interoperability of data sharing within the sector. So if I go to one walking clinic and I narrate my entire experience, and then I have to go somewhere else. My data doesn’t move with me as a newcomer, and then I have to rehash it all over again. And I think that that is frustrating and but that’s something that can be fixed. Like that’s a problem that can be fixed. Um, the fourth thing I will say, I’m sorry if I’m just going on, it’s just because this is one of the rich Pandora’s, you know, you open the Pandora box and there’s all this thing in it. Wow. This is great, please. Yeah. Nancy had talked about one of the surprising things that came at us through the dialogs, and we’ve seen continue to manifest afterwards, is the muscle level, which is the sector, the settlement sector, the providers, community organizations. There’s a lot of power activity, energy that is happening there. The one of the challenges is that it seems all of this knowledge and expertise is siloed, because the sector is not speaking to each other. Organizations are not talking to each other enough. Like I appreciate this podcast, because, like you said in the beginning, it’s opening up the conversation more broadly, and when we had the beyond technology, beyond healthcare dialogs, at the very last day, which was a co design event where, which bringing people together to co design, what does the best in class experience look like for newcomers? There was just so much energy in the room and hope that filled the space, because everybody felt there’s something I can learn from you that you’re already doing and I can adopt in my practice. There’s this insight you share during the breakout group that I had, you know, I thought that’s the solution to the problem we’ve had in my organization for five years. And so that event, you know, through it, we’ve built this community of practice. We now have a newsletter. We’re hoping that we can keep that community engaged and energized, but I feel like there’s a lot of power and richness that can come from different organizations coming together to support each other and exchange knowledge, and I think you do that very well with the km hub, where you know you just have all the information so that people can be aware of what others are doing. And I think the last thing I will say is what has become clear through our study is compassion. Compassionate Care is a social justice concept. It’s not just, and that compassionate care cannot just end at the clinical encounter or at the bedside. Compassionate Care, from a provider’s perspective, is advocating for better policies. It’s supporting your patients to have good civic engagement, to understand their rights, to know how to advocate from for themselves, to understand the resources that is accessible to them. I really feel like the second sector is doing quite a good job under challenging circumstances to do that very well. I feel like the rest of society needs to come on board and support that sort of work.

Marco Campana 49:10
Thank you. Thank you both. I want to unpack the last thing, because when you say compassionate care is a social justice issue in theory, so too is virtual care or access to digital inclusion and digital equity is a social justice. If we’re going to be able to do virtual care effectively, we need to look at the question of digital inclusion from both the newcomer in this case, or the client or stakeholder or community side, but also the service provider. And I know that that that conversation came up in your in your in the first project in particular, like, how do we ensure that these people were now layering a second system on in terms of how they provide service. Can do that and do it in a way that that they feel competent, capable, and it’s not on the side of their desk. And and also, how do we ensure if we are moving to new versions of accessing service through virtual care? That the people who want to be able to access it have the skills, technologies, bandwidth, you know, abilities, in order to do that. So I wonder, and I know that came up as a conversation for you, is that part of the conversation that this group has been in the CO design or in the work that you’re doing, in the beyond technology project you’re looking at,

Ibukun Abejirinde 50:21
yeah, great question. Marco, yes, it did come up. I feel like between compassionate care, like you said, compassionate care, virtual care, digital health, AI trust is central to everything, and the the inability of certain groups within population to engage meaningfully, meaningfully and fully to the extent that they want within a very digitally enhanced society, whether it’s healthcare or the banking sector or education or whatever it is, I think that’s a very crippling effect. And some of the things that we talked about that came out from the CO design is lack of access to the hardware, right, lack of or insufficient, let me say, because we are now seeing a demographic shift in the profiles of newcomers, asylum seekers, refugee claimants that are coming in that is that goes beyond the stereotype of, oh, you know, they can’t speak English, or they have this every accent. We’re seeing a rise in highly educated professionals who are coming in so that digital literacy, but also digital comfort, right to be able to demonstrate your skills comfortably in a for lack of a better word, psychologically safe environment, right? So internet bandwidth, one of the one of the exercises that we did at one of our engagement sessions, and we’re talking about trying to walk through, what does a person need to need we need to do to be ready for their virtual care appointment? And a person we lived experience as a refugee was in the room, and everybody was talking of, you know, going through, you know, they have to schedule the appointment, and they click on the Zoom link and blah, blah. And someone said, Well, you have to recognize that we come into the country and we actually have mobile phones, smartphones, but nobody really realizes that some of the smartphones we come with are not compatible in Canada, and that’s one challenge. So we have to solve that compatibility issue right with the same card fitting in and everything. But then the second bit is, you can’t get a mobile line without an identification or a sin. And if I’m a refugee claimant and I don’t have all my documents, or I’m someone with precarious status, I don’t have that so I can have a smartphone, it doesn’t mean I have access, and we’re like, oh, we need to go back, like the journey starts very early on. So we need to really think about the step to step of how we’re designing digitally enabled systems. And we have to design for equity, because if we design for the least group, the most marginalized group as as a professor, Stephanie Nixon, will call it the bottom of the coin, everybody else will be able to have access. But I think there’s this predominant where we are designing and using technology in a very transactional and commercial way, where it’s it has to work for the majority, and once it works for the majority, we don’t care about anybody else, so I feel trust, equity access very key in how we’re supporting populations to be able to access and make the best of the potential of virtual care and other forms of technology.

Marco Campana 53:56
That’s another great example of nuance in digital inclusion. So you’ve got the phone, well, so what if you, if you if it’s not compatible, or you can’t use it, or the system that you’re trying to connect to isn’t mobile friendly, for example, which we find a lot in the settlement sector. I want to ask one question related to because we’re talking about virtual care, and in person care a lot. And in a nuance in our sector, we’ve been talking a lot about hybrid care, the idea that you can access services in person and online, remotely and and move fluidly between those. So it’s a high bar that we’re trying to reach. But do you do is that part of this conversation of virtual care as well, that client that people accessing health can do both. They’re not just an in person client or a virtual client, but they’re a client who will sometimes come into in person and sometimes on the phone or by video call, or what it might be, is that part of this conversation, or is it more of a binary kind of either or?

Ibukun Abejirinde 54:47
No, I think it did come up in the reimagining virtual care study, but it came up with a but so when we finished the study, we did go to the three different community organizations that partnered with us. And supported us, and we’re sharing the findings. And it was interesting that compassionate care was conceptualized as giving the patient the option to choose what is best for me right now, do I want to have a virtual appointment, or do I want to come in person? And one of the feedback we got was for the patient to be able to choose in an empowering way. We have to assume that they’re making an informed decision. And if you don’t understand the Canadian system and how care is delivered, and what circumstances I can make a diagnosis or not, or the information that the clinician has, then the patients may not always know this is the right thing for me right now, it takes a while, and it takes a different kind of patience to be able to say I can make the decision for myself. And this is something we captured in the comic, the Knowledge Translation comic that we released recently, which is you will see in the comic. The comic tells the story of two different newcomers, different genders, and their experience with virtual care, navigating that decision making. And for both of them, there was always this prompt of, would you like your next appointment to be virtual or in person? And you will see in the comic the person thinking and the woman, in one case, who had a toddler at home, was like, I don’t think this is going to work for me, because the only way she had had a virtual encounter and the baby was crying in the background, and she’s like, the only way you work for me is if I can get my friend to come look after the child, or my husband stays at home with me. So it’s all of that. What are the decisions, or what is the information that people are using to make a decision about what is right for right now and for me, and I think it’s going to change from day to day, from circumstance to circumstance. So hybrid definitely needs to be the option. The Interview showed that people felt that virtual was good in this context versus that context, going back to Nancy’s point of, we have to think about what works, what doesn’t work, for whom, under what circumstances, why. But Nancy, I don’t know if you have anything to add on that point.

Nancy Clark 57:10
No, I don’t have too much to add. One thing that strikes me in this conversation is sort of the that question that you just said, but also, what role does virtual, digital health play in the overall healthcare experience of newcomers? And I think that there could be a lot of positive a lot of I think one of the words that was used was empowering, or empowerment. And sometimes we come at this from a deficit base, meaning that, you know, there’s this tendency when we apply intersectionality to look at the marginalization, the the lack of voice, the lack of agency. But there may be, in fact, what newcomer the knowledge that newcomers bring, or newcomers that have been here for a while, that hold particular expertise. And so how can we harness that knowledge to promote change? And so I always think about this notion of belonging and connection. And if we come back to can virtual care in whatever modality is used, if it can promote belonging and connection, I think then we can also address the issue of trust and perhaps even well being. What we want to do is make sure that it doesn’t further what I mentioned earlier, marginalized, stigmatize or re stereotype. So even in the process of CO creating tools, or, you know, there’s a lot of work being done in M health now with promoting these apps that can have better access for mental health, for example. But, but you know, if we’re co creating like, I think the inclusion of people and their knowledge is important for creating these new tools and technologies, but also when we’re creating that, that that we don’t re stereotype in a way that, you know, like I said, force reinforces this marginality versus really thinking about, You know, people already come with knowledge and again, what I know from my research is that for newcomers, it’s important that providers know something about them, but it’s also important that providers don’t box or categorize people in ways that a. Make assumptions that this is going to be a barrier for you or not, and so I think coming back to that notion of empowerment. And you know, it may be that people are already quite used to some technology, but we know that globally, there is a digital divide as well, as well as when we think about gender as well, so meaning people that are more literate, literate tend to have better access. People that have better wealth tend to have better access. And generally, that tends to not be women in general, and making that generalization, so it just comes back to some of the points that we become raised already earlier. And I would sort of leave with, you know, how can we promote compassionate care, but also better connection and belonging for newcomer people in Canada,

Marco Campana 1:01:05
I feel like we could have this conversation for a few more hours, but I want to be respectful of your time, and I mean, maybe we will revisit this in a future conversation. So I just the final question I want to ask then for you, Ibukun, is there’s a lot of places this work has taken you, the Pandora’s boxes, as you mentioned, and there’s a lot of places it could go. So where are you hoping, or where are you taking this work from here in terms of next steps?

Ibukun Abejirinde 1:01:27
Um, good question. So I think one is recognizing the energy, the assets, um, that already exist, and elevating, championing and maintaining that which we’re doing through the community newsletter, and sort of trying to keep a community of practice engaged for sharing, mobilization and moving the work forward. The second is the last day of the dialogs. Was a co design event about designing a best in class experience for newcomers, and what came out very clearly is within the specific context for immigrants and refugees. Technology has a role that it can play in supporting navigation and enhancing that experience, but it has to be human powered. We can’t leave technology to do its thing by itself. There’s what technology is great at doing, and I think we need to champion and ensure it’s doing that, but there’s that human connection that technology is not able to bridge. And so we’re thinking of what would it mean to deliver a best in class experience that is human powered, technology enhanced and is supported by very transparent, accountable and equitable governance framework. So we sort of have straw drug ideas that came out of that CO design event, and now needs to secure some funding to be able to do some interventional work to translate those ideas into a prototype and test it and see how it works to support navigation and to enhance the settlement experience, we’re also still disseminating our work to different audiences. Upcoming webinar that will happen with n4 we’re going to be at the metropolis social determinants of health conference to share some of our findings, disseminating the comic that I shared about which you can put in your show notes. And there’s continued work now in putting together the paper, a paper which is more to an academic audience, but translating that into this idea of intersectionality as acknowledging that they are existing solutions that we can leverage. And what does it mean to get that work going? So I feel like that’s one place we are at now where we’re seeing very clearly that at their mechanisms at the miso level. And when I say that, I’m talking about within the settlement sector and from community organizations that can be activated to get things done despite the limitations within the overall, broader system, and so thinking through and talking through, what does it mean to be able to do that work within pew region? One of the things that is coming up, and I’m sure you’re aware that there’s a crisis of trying to support refugee claimants and asylum seekers who are coming in, are trying to navigate finding shelter, food, settling. There’s workshops that have been, I’ve been co leading with the Region of Peel, Mississauga oht and the local immigration Partnership, which is pure newcomer Strategy Group, to think through, how do we build accessible, equitable and quality pathways for refugee claimants and asylum seekers to be able to navigate the system in a way that is compassionate, that is trustworthy and is responsive to their needs. So just a couple of things that have been coming up. Nancy, I don’t know if there are other things I may have missed that you want to add as well. No,

Nancy Clark 1:04:56
no, I think that’s pretty thorough. We’re pretty I’m pretty. Excited about that conversation, and it’s, it’s sort of like we’re trying to catch up with you know, we’re already live, we already have all these complexities. And as you said, Marco, now we’re adding the digital solution. And so just to be mindful again, that we’re not saying that the digital culture is the solution, however, it can be very a very useful tool when used appropriately, and that really that human experience is at the heart of care for providing the best care, the best equitable care and the best compassionate care.

Marco Campana 1:05:43
I think that comes through really strongly. So fingers crossed for the funding, but it sounds like there’s lots of touch points now and in the future where people can find out and maybe tap into the work as well. So thank you both. Thank you. I’ll just is there anything I haven’t asked you or that you want to make sure people know about before we finish up? This has been a really rich and interesting conversation and lots to think about. But is there anything that you’re dying to say that I haven’t asked you or given you the chance to throw onto the table?

Nancy Clark 1:06:11
Well, I just want to put in another plugin for mental health. I guess I feel compelled, because that’s sort of something I’ve been trying to work on and understand, especially when it comes from different cultural worldviews and perspectives. And I wonder if we make that assumption that the digital that these tools that are, you know, AI, you know, info use, AI, if that is something that would be a natural go to culturally speaking. Because, as I mentioned before, mental health is is a social construct. And yet, globally, we have this dispo, you know, we have these mental health conditions across cultures, such as severe, persistent mental illness, and all the way to, you know, post traumatic stress, stress, schizophrenia, etc, etc. So when we’re thinking about that too, to think about what would be the first thing that people would need or go to for support. And so I guess I’m answering my own question, coming back to this notion of the human experience and that that shouldn’t be disconnected from these tools. I

Marco Campana 1:07:35
think that’s a really important point through all this, some people talk about with AI, for example, the AI sandwich start with the human, use AI as a tool, and then end with the human to make sure that everything is is not hallucinating or is not leading people astray, for example. So Ibukun any final thoughts?

Ibukun Abejirinde 1:07:53
I think this is a conversation starter, and there’ll be many more conversations to have. I think for us, it’s we’re very we think as in a very applied way. So it’s like, Okay, we have the theory, we have the framework, we have the tools. We know all of these things. What? How does that translate into action? And so I’m very curious, and literally having an invitation to say, anyone who has ideas on how to move this work forward and the role that we as applied researchers could play in contributing to that work, we’re happy to support and champion it. Thank you very much for having Marco.

Marco Campana 1:08:30
I love that idea too. I appreciate that because I think there are people who have ideas and questions but have no outlet for them, so that’s a great invitation. I appreciate that. Thank you both conversation and as you said, we’ll continue it, but a lot here for people to reflect on. So thank you for that.

Nancy Clark 1:08:48
Thanks for the opportunity. Marco thanks Ibukun,

Ibukun Abejirinde 1:08:50
thank you.

Marco Campana 1:08:52
Thanks so much for listening. I hope you found this episode interesting and useful for you and your work. You can find more podcast episodes wherever you listen to your podcasts or also on my site at marcopolis.org I appreciate you listening. And if you have any tips, suggestions, ideas or want to be interviewed, or know someone who wants to be interviewed, please drop me a line through my website or [e-mail] Thanks again.