S2E2 - EMPaCT's meaningful and purposeful approach to equity, diversity, and inclusion in patient engagement in research (Interactive transcript)
A lesson on how to engage with people, engage with purpose, and engage for change.
Episode overview
In this episode, guests Ambreen Sayani and Omar Khan, members of Equity-Mobilizing Partnerships in Community (EMPaCT) discuss the importance of equity, diversity, and inclusion in patient engagement in research. They highlight their group's work in creating meaningful collaborations between patients and healthcare providers and offer insights and resources for those interested in incorporating EDI in their own projects. Read on for the full episode transcript.
Meet our guests
Omar Khan is an organizer and advocate working with newcomer refugees and refugee claimants. He connects with families all across the Greater Toronto Area. Since November 2019, with residents and agency employees, he coordinates a resident-led group called Engaged Communities that focuses on youth development and mobilizing and amplifying community voices, particularly youth and newcomer voices. His involvement in healthcare advisory councils comes out of seeing the unequal health outcomes for many refugee newcomers compared to longtime residents. In addition to being a member of EMPaCT, he is currently a co-chair of the East Toronto Health Partners' Community Advisory Council.
Dr. Ambreen Sayani (MD, PhD) is a Scientist at the Women’s College Research Institute, Women’s College Hospital and an Assistant Professor (status) at the Institute of Health Policy, Management and Evaluation in the Dalla Lana School of Public Health, University of Toronto. She is Principal Investigator for the Improving Cancer Care Equity (ICCE) Research Program that aims to improve cancer outcomes for all populations groups by promoting equitable cancer prevention, early detection and access to high quality care. Dr. Sayani holds a six-year, Transition-to-Leadership Stream career development award from the Canadian Institutes of Health Research (CIHR). She is a Health Equity Expert Advisor for the Canadian Partnership Against Cancer (CPAC), a member of the Medical Advisory Committee for the Canadian Cancer Survivor Network (CCSN), and co-initiator of Equity Mobilizing Partnerships in Community (EMPaCT).
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of Content
Can you explain what trauma-informed means and how listeners can apply that within their work?
Could you also expand, while you're at it, on the difference between equitable and equal?
Resources
EMPaCT’s website: has lots of goodies, including links to the upcoming EMPaCT toolkit, a video library, and relevant manuscripts as they get published.
The three published papers discussed in this podcast (and that also happen to be free to access) include:
Episode Transcript
Anna
Hi everyone. Welcome to season two of asPERusual, a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. Today is a special episode in that it is the final one of our series examining future directions for Canadian patient engagement and research. If you'll recall, these future directions were identified through our participatory study that inspired this podcast. Be sure to check out our website (asperusual.substack.com), for more information about this study and the future directions that it identified.
Today we're going to be talking about the perceived lack of equity, diversity, and inclusion (or EDI for short), in Canadian patient engagement and research. When we look at the current roster of patients engaging as partners in research, it can feel like the criteria to be included is retired and white. In contrast, according to our study findings, a preferred future state for patient engagement in research is one in which patient partners better reflect the sociodemographic makeup and perspectives of all Canadians, including underserved and underrepresented communities and those with different experiences and roles like care partners. Within the health care system, diversity also manifests in different ways within this preferred future state. For example, patient partners are regularly being engaged across all fields of research, with researchers at all career stages and in teams comprised of multiple patient partners that support each other in navigating the research landscape. It's quite the vision, so to help us move towards this preferred future state we have two guests that will help us better understand the meaning and importance of equity, diversity and inclusion, as well as approaches to incorporating it within our engagement practices. Ambreen and Omar …
Could you please introduce yourselves to our listeners?
Omar
I'm Omar Khan. I'm a patient and caregiver partner in a number of contexts in health care. But the reason I got involved was back in like 2015, 2016 timeframe, my mom got an autoimmune condition. And my sister and I realized that if we hadn't done a lot of that [advocacy], we could see my mom would probably be dead now, honestly. And we had to really push on a lot of the care or lack of care that my mom was getting. And then I got really involved with a lot of refugee newcomers in the Toronto area, and I realized that so many of them were getting really poor care and a lot of them couldn't or were having trouble doing that advocacy. So when I was asked to get involved in some of these spaces, these health care consultation and engagement spaces, I was like, I need to be there to maybe help change the direction of the conversation.
Ambreen
That's great, Omar. My name is Ambreen Sayani, and in my professional capacity, I'm a scientist at Women's College Hospital and an assistant professor at the University of Toronto and the Institute of Health Policy, Management and Evaluation. I've previously trained in surgical oncology. I have worked in the capacity of a medical director, overseeing multiple international companies. I led my own consulting in all of those roles. I was using research created by other people to define my way forward, and I was providing care to patients. That was always very unsatisfactory to me as a person. And along my journey, I've done my PhD, and I've learned from wonderful people like Omar, who've really shared some of these spaces with me.
“And I've gone from providing care to patients to partnering with patients, because when we have a patient-centered perspective, we are prioritizing the needs and priorities of patients so that a system is actually taking care of who it's supposed to take care of.”
But within all those pieces, I really draw from Bell Hooks’ concept of Centering the Margins.
“It's the idea that if we keep designing with the focus on the already privileged, we will continue to exclude people who don't have access to that care. And therefore we perpetuate inequities and replicate the status quo.”
But when we go from the margins and we work with people who are most excluded and suffering the most health inequities, when we prioritize their needs and the way they would like to receive care, then we just have a trickle effect where everybody receives good quality care because that is what it ultimately does.
That's me in not a nutshell. A bit of a longer version of what brings me to this work.
Anna
Thank you both so much for coming onto this episode. I'm so excited to pick your brains. So then why don't we start? One of the many reasons that I thought you'd be ideal guests on our show today is the innovative work that you've done with the Equity Mobilizing Partnerships and Community project, or EMPaCT as you call it for short.
Could you please provide a brief overview of EMPaCT?
For example, how it came about, what it strives to achieve, and how it engages patients?
Ambreen
EMPaCT, like you said Anna, stands for Equity Mobilizing Partnerships and Community. It is a co-designed model of patient engagement that stemmed from the idea of a patient partner, Alies Maybee. She and I were sitting and scratching our heads thinking, well, what we currently have in place doesn't work, and we're certainly not hearing from all people. So how do we understand what's really going on? She has her perspectives. I have my perspectives. But we certainly don't represent a variety of worldviews that can inform why that's even happening. So we set off on a journey of listening and learning, and across that journey of listening and learning, Omar joined our group and we started to scratch our heads together and realize, like, so what's going on in this ecosystem? What needs to be done better? So that's how it started. That was the initiation. And from there we went about co-designing — well, if that step doesn't work, what does a better step look like? And if that step is a barrier in the institution, what can we do to change that institutional barrier? So what we are now is a model of what works. We've been doing this for over three years. We've been recognized by multiple awards.
We are a table of predominantly patient partners, but also academics like myself. And we form a community for people from the health care system to come and engage with us on our terms, on our timelines, on our priorities, and the way we have set about the rules of engagement.
And in doing so, we've also created a process that is a model which can be replicated. So I guess long story short, it is, yes, a community table at Women's College Hospital, but it exists because of co-designed processes, co-designed governance, co-designed outputs. And from that we've developed a skeleton or a Lego box. Like we say — you take all those tools and maybe you can do something better in your own situation. So it's a model of how it can be done.
Omar
And to add on that maybe the more practical things. Like for me, I was already sitting at some healthcare tables in Toronto. And I definitely had the frustration at some of those tables. At some of those tables you would be surrounded by patient partners and caregiver partners. And that was really great. But of course, there was the question of like, who could make it to those meetings? But even more than that, there was this feeling like the system people would come and talk to us to check a box stating that they had talked to some patient partners. And then when I would sometimes be invited to be on a smaller group, say like a task force or something that they were working towards within the system, I might be the only patient and caregiver partner at that table. And the language can be very technical. And I definitely had a feeling that I was there because someone had told them, you need to include a patient partner… oh and look, Omar's available. Check! And that, is the opposite feeling from EMPaCT.
I think one thing I really want (and there's so many great things), but one thing I really want to highlight is we (the patient and caregiver partners) are the majority in the room. And we really define what the process is. And those are two things that don't exist in most patient engagement.
Anna
So who is it that can access EMPaCT? And could you give some examples of the types of services that they seek from you?
It sounds like perhaps it's people within the health care system. Is it individual research teams as well, or how does that work?
Ambreen
I can get to that. But I did want to share because Omar brought up some really good points. Very often we piggyback off each other so we might be doing this quite a bit. When we identified a lot of the issues that we were seeing on the ground (as I mentioned to you we started with listening and learning) we also published a paper very quickly. This was during the pandemic, and it was on the
5 key principles that need to be applied if we are going to improve EDI in patient engagement.
I can list the five here. Omar spoke about some of them. I spoke about some of them earlier, but I’ll just list them for you.
An equity-oriented outreach - which means people who are most excluded is where you spend your time and resources and human capacity to include.
Co-build a sustainable safe space - So the idea that there is this safe space which Omar was alluding to, that is sustainable. So people can keep coming together and you co-build and co-design what that space looks like so everybody's comfortable.
Consider issues of accessibility - You can't always have one person in an institution or in a hospital. What is most accessible and what does that space of accessibility look like from the patient partner lens?
Build capacity one relationship at a time - We cannot do this work without prioritizing relationships and centering that relationship above all else. Everything else needs to be put on hold if relationships are at stake. And that requires a trauma-informed approach.
Do no harm - What that means is we don't label people. People come as their full selves with a complexity of lived experiences, and they should be able to talk about it if they feel like it, if they don't feel like it, and when they feel like it.
These were the issues we identified while listening and learning, and then we took them into practice and co-designed this model saying if we are seeing all of these different issues and we know that these are the pieces that need to be addressed on a clean slate, if we were to create something up from scratch, what would it look like?
And that is the model of EMPaCT, which is collectively governed, non-hierarchical, majority patient partners, flipping of the power dynamics, and allowing people to come to the table to learn in a safe environment from the perspectives of people with lived experience.
So who comes to the table [of EMPaCT]?
I can summarize and then maybe Omar, we can go back and forth or just chime in. It was co-designed at the very beginning. The idea was that unless there are clear pathways to change, we don't want to engage. So there has to be a clear pathway to change. Then you bring people around the table and we identified three pillars, which were research, policy, and practice.
Every group that comes to EMPaCT is usually engaged in some kind of decision-making in one of those three pillars, and we ask people to identify their pillar. Are you a research project? Are you a policy that's being considered? Are your hospital practice and administration piece?
The second part is we always require the decision-maker to be there. We don't engage in conversations unless it's actually the person who's going to decide, because why else do we want to have a dialogue unless it's the decision-maker?
And then we work with people in these streams to identify which part of their project is amenable to change. Because when you engage with people, yes, you have projects in these three pillars, but which part of your project really can be influenced by having a dialogue with people?
So we've consulted for and engaged with over seven hospitals in Ontario at this point, 11 institutions in Ontario, and two pan-Canadian projects. And it's because we've built our collective expertise to do health equity assessments as a group and provide recommendations to people who come to the table on how to make their project more inclusive and equitable.
Anna
Can you explain what trauma-informed means and how listeners can apply that within their work?
I think within what you mentioned, that may be one area where people may be a bit unclear.
Ambreen
A trauma-informed approach means that we have some contextual understanding of the systems of oppression that surround us — what are the social, historical, political contexts of people's lives, and what are the possible harms and discriminations that they could have experienced before we even have an interaction?
That historical contextual understanding is super important. And when we have that, there's the humility to give people space and not judge and not stereotype and not be biased and to come to relationships as a full person. I think that's what it's really about — recognizing contexts, coming as your full self, accepting people as their full self, and building a relationship.
Omar
On a very, again, practical level (and I won’t get into a lot of details here), but I think one thing that EMPaCT has done really well is viewing people as humans who have a full life experience and more than just an identity box that they might tick.
We've had multiple gatherings in person of our group, which I think is a really strong way to build relationships. Even really tragically, one of our group members passed rather suddenly, and I think everyone in the group was really wrecked by this. It was really hard and we had a meeting soon after that where we already planned to meet in person. And we spent a lot of time reflecting on our member and thinking about what they had meant to us and what they meant to the world, how much they had contributed, and how great a person they were. And that level of humanity was really touching and I think so important because it can help create as Ambreen said, these sustainable spaces.
And of course, in people with a lot of life challenges, those systems of oppression contribute to potential early passing of people in society. And so we have a real recognition of that in our group. We look at that also from the human perspective, like this is also just a member of our group that really matters. And we need to think about them and keep their hard work in our hearts and continue it.
So, we were talking about how that contrasts with other spaces. And one thing I will say, I've made this mistake. I was involved in other health care tables where you want to grow the membership, right. But you want to do it in an equitable way. Then you realize you're just bringing people in, but you're not really understanding that they're more than just their identity. And I think the one thing that people have said to me over and over when I've been in these spaces, not the EMPaCT space, but these other spaces, is I didn't feel like I was really being listened to. I didn't feel like there was a pathway to change so why should I stay involved? So that's that first attempt at trying to be an equitable, diverse, inclusive group. But if you're not thinking about the actual impacts you can make as a group, then we're just kind of doing this identity thing where — Oh, yeah, okay, sure. We need a youth. We need a black person. We need a Muslim. Right? You're not thinking, okay what does everyone want?
People get involved because they want to see something change. And so I think that's something that we've been very upfront about at EMPaCT, which I really appreciate.
Anna
Thank you for that explanation. While we're at it,
Could you share your understanding of equity, diversity, and inclusion and how perhaps that has changed over time with your work on EMPaCT?
Ambreen
I like to view it in a bit of a odd acronym. I say diversity, inclusion and equity, which turns out to be DIE. And I mean, EDI sounds way better than DIE but the idea is:
We look at diversity first. And what is diversity? Diversity is a variety of different lived experiences, perspectives, intersectional identities. But that's diversity.
After that we need inclusion because inclusion means that with all of that lived experience that people can bring, there is a space where they feel included, where they feel respected, where they're okay to just be who they are.
And from that stems the problem-posing and the problem-solving that can lead to equitable change.
You can't really reach equity and redesign healthcare systems and services unless you first understand diversity, build inclusive spaces, and then partner for change so that we have equitable care.
That's how I view it, particularly in the context of patient engagement.
Anna
Could you also expand, while you're at it, on the difference between equitable and equal?
I know that's a common source of confusion for people.
Ambreen
Equity is a buzzword and people throw it around a lot, but equity is really a word that stems from the critical social sciences. So the moment we talk about equal, we can say, well, we all have a health care system that is equally available to all of us. But it's unequally available. And then the question is, well, why is it unequally available? And that's a whole context that I don't want to get into. Equal means everything is the same for everyone. Equity is an understanding that there are social, historical, and political contexts to people's lives and it isn't just that moment. All of those historical pieces build up into who they are today, and therefore to be able to equally access something, for example, there are unequal distributions of things and acknowledgments that need to happen. So then I would say they come from different paradigmatic worldviews even. And if you're using the word equity, you want to really do justice to the fact that this is a critical social science concept. And with that, you are invoking the idea that all people come from historical, social, and political contexts, and you cannot just pluck one person out of their entire history and assume them to be in that moment, just at that point of interaction, without understanding everything else.
Anna
What would you say are some concrete steps that we, as researchers or patient partners, can take to better incorporate EDI considerations within our work?
Omar
So in going back to the order Ambreen put things in — I think it's helpful because I still see researchers thinking, okay, well, I need to involve folks because I have this checklist and I need to have an equitable and diverse representation of the community. But what I've heard from a lot of justice seeking communities is that, we get pulled into these conversations, but we actually don't have any power in those conversations. And there’s not necessarily anything that is going to change in the work when we're involved. So I've had so many people leave other health care research and engagement spaces I've been involved in some where I felt like no one was listening to me. I came and sure I got my honorarium and I spent a lot of time and didn't feel like anything was changing.
So I think what's really important is having a group involved extremely early. Ideally as close to the beginning of the project as possible, because then there is the potential to influence. I think a lot of people get involved because they want things to change.
So I would say that's one recommendation and I'll pass it to Ambreen.
Ambreen
Omar, you could do this whole podcast on your recommendations. I've heard him — there's a long list of things that you recommend. So maybe I'll say some more and then you can chime in.
I like to really layer it down in terms of — so I'm a researcher, I'm an academic myself. It's me on a personal level. What …
Can I do as an individual then?
Supports do I need from an institution to do this well?
Are the structural issues really, that can either hinder or help?
On a personal level, I would say first and foremost, not everybody needs to do EDI work. And I know that's a controversial statement, but if you are doing EDI work, it's social justice work, period. And we need to be okay with people doing good EDI work or people not doing EDI work. We cannot expect everyone to come in with the skills and capacity and time and resources to do this the service that it needs to achieve the objectives that we want.
So assuming that we're in this space, genuinely committed to social justice because that is what EDI work is, then the work starts on the self:
How do I improve my own understanding of contextual issues?
How do I understand my own biases?
How do I fix my own language?
How do I not fall into those traps or stereotypes?
So the work really begins on the self. It's a journey. I can't say I have all those pieces correct myself, but then that's where your village of people comes in. When you are a group of people committed to doing the same work, they will call you out when you've tripped up and help you course correct. So I would say we're not striving for perfection here. It's a journey of learning and a journey of making yourself a better person the next day to show up at work, recovering from your mistakes and doing better.
The second piece is the institutions. And we do this work in EMPaCT. We have a paper written about how we co-designed.
We couldn't have been co-designed without an enabler institution, and the champions of change, and the early adopters who were willing to grow out in the co-design process with us.
And with that, we changed many institutional processes. How are people being reimbursed? We never had a digital device policy for patient partners. We got the institution to change that. We gave away devices, something the institution had never done before. So it's about identifying those issues that are hindering the engagement, having an institution that's ready to sit there and talk with you about it, and then redesigning and rewriting those policies so that the engagement works better. Lastly the structural level — I'm not sure we can always hit those pieces with patient engagement even. But ultimately, I would say my biggest enabler to do this work was the fact that I have a six-year career development award from CIHR. Had I been able to spend the time and resources to do this work without that? I think not. It was the biggest enabler for me to get on this journey. So that was structural. It was funding that was flowing from the system down to me to do this work. But then ultimately when we do it better, and as EMPaCT we're doing this now right, we're working on policy briefs because we see issues and we have enough voice and power as a group to say well as EMPaCT we think this is important. This is our policy brief. So then we're challenging some of those social political discourse that we know affects the lives of all of our community members.
Omar
To build on a lot of that, I think one very practical thing for researchers or engagement professionals is that…
If you want to do this work well, you have to be patient. It takes more time.
By just that point that we made before about building relationships, right? If you're trying to just find someone to answer one question so you can keep moving on with your study, you don't incorporate the time into that process to build the relationships that can really make things meaningful both for the contributions and for the potential improvement of your research, and for the partners themselves, the patient and caregiver partners.
As Ambreen said, not everyone needs to be an expert on this. And I think that's true. You should consult experts. Hopefully, there are experts within your institution or that you know in your community who can help out.
I think the biggest real frustration I had — and it's more than a frustration, it’s so painful — is I know a number of people who will never do patient engagement and will never be involved in that way again because they felt harmed in the process through the previous engagements they had. These are folks I know personally who I feel are such strong voices within their community. But they felt that health care engagement stuff is not for me because they didn't listen to me or there were microaggressions in my interactions with them. That is terrible.
So if you can’t be the expert, because it can be very hard to be the expert, find the people who can support you to do this work well because you really shouldn't try to half-ass this work. It will cause harm. It's not just like, oh my research won't be quite as good as it was. You really will harm the people and the communities they come from.
Ambreen
Now I'm going to bounce off Omar to say one of the reasons why EMPaCT has been so phenomenally successful… like, we couldn't have imagined, Omar, when we first met and started to think about these things, that this is where we would be… but one of the gaps in the health care system that EMPaCT fills is exactly this. We have researchers who are doing these projects that are due within a year, and they have a limited amount of money and they have a limited amount of time. Where do they even get started in terms of, if I want to do this from an EDI lens how do I go out and build those relationships in a meaningful way? How do I create those spaces for dialogue? And how do I then feed that back into my project, which, oh my gosh, is due within 12 months? How do I even do this? That's the gap that we fill.
EMPaCT as a table — it was co-designed not just with the patient partners, but also with people within the health care system. I encourage you again to read the paper to understand how we found the intersecting opportunities between the community, health care system, and external and more strategic funders.
It's the idea that we provide and have created enough capacity within our group to have those relationships. We have the safe space. We've skilled up to do health equity analyses and assessments. We’ve created a structured process for providing feedback so that projects can have tangible recommendations for change. Who in the health care system has that?
We've been flooded with research projects asking, can you please help us? Because for the budget line that we have for patient engagement, you can give us all of those perspectives without investing in the relationships, without harming communities potentially, and actually providing relevant feedback to my work so I can run away with it tomorrow and make my work better. That has actually been the reason why we're fully booked next year as well. The demand is huge and there is so much need for more people to be doing this in an appropriate way. We are looking to spread and scale and are having those conversations in different areas.
Anna
For the listeners out there who really want to read these papers — I know that's what I'm going to be doing right as soon as we wrap (even though I did read both already but they're definitely worth reading more than once) — don't worry, we'll share links to these papers (here and here) on our Substack page.
I've heard you mention the term scalable. Is the idea also that people who are already doing this work and are interested in really furthering it themselves and increasing capacity apply this model to set up their own version of EMPaCT within their research center or within their hospital?
How do you envision the scale-up component of EMPaCT?
Ambreen
I can start Omar and then maybe you can add. So, I think I need to step back a little bit because spread and scale were on our drawing board from day one when we were listening and learning and co-designing.
I think another one of the big harms is when we go in and do participatory work, create a small-scale project, and then the funds run out and the project is done and dusted.
So we had to bring scale in here from the very beginning and we grounded our work on three key themes:
We're using a critical social science framework to contextualize inequities.
We're enabling social participation from perspectives that have traditionally been left off.
Thinking of scale-up from the very beginning.
Determining our scalable unit that can be applied and taken and grown in different areas is the first piece of work that we did. Where are we now? We've got funding from CIHR to develop an engaging-with-everyone toolkit, and within that toolkit are a variety of resources. If you're an individual researcher, if you are a hospital administrator, if you are a patient partner, if you are a patient partner coordinator, there are a variety of tools in there for you to work on yourself and tools for you to take back to your institution to say look, this is how they did it. Look at their contract. It's so easy. And it worked for their institution. You think we could apply something similar here?
What we expect is people can pick and choose different resources based on their own setting. If you want to set up an EMPaCT on your own, you really need everything, along with much structured guidance and experiential learning. So the people that are starting to scale an entire EMPaCT, not just the ideas and bits and pieces for more inclusivity, are working closely with us to figure out — What's in this Lego box? What are the pieces within our own institution that can be added to this mix? What can a new co-design model in our setting look like?
We can't take what we co-designed and just impose it on others. We have tools and strategies and ways of being that we know work really well, but that was within our context. If you take it to a different context, you still take the same tools and resources and ideas and ways of being, but the things are a bit different so the structure turns out a bit differently. But it's the whole process of coaching and experiential learning that happens. So I think there are two ideas:
You can pick and choose certain parts just to become more inclusive as you go along, or
You can go the whole way and develop and seed an EMPaCT in your own jurisdiction with help and support.
Anna
That's amazing. I always say even with my own work that ideas should be free and we should all be supporting each other in our learnings and in applying everything that we are all learning, both collectively and individually, to further our field as well. That's really nice to know that you offer individual services for projects as well as if someone is really interested and invested in genuinely doing this work within their space, that they can also reach out to your group to have help with that.
Are there any other lessons or themes that always seem to arise or recur [during EMPaCT consultations] that you'd like to share with our listeners?
If lots of people are thinking or needing to learn from them when they see you, then I'm sure many of us would benefit from them as well.
Omar
I could start with one. Ambreen had better words for this. I think it was something about starting from the margins. I think one thing that's come up seemingly over and over and over in our group is — if you're designing, whether it's an intervention or your research project — if you're thinking about the people who are most oppressed, who are having the most struggles, and involve them in that work, oftentimes what you create coming out of that will really apply to everyone and can be better for everyone. I say this in every space I'm in, not just EMPaCT, because I have seen that actually happen. And so I feel like at the EMPaCT space, we sometimes see digital tools that come through and people are working on digital tools, which can be great, right? It can really open up access to a lot of different populations. I think I've said in multiple of these consultations…
In thinking about your design, bring your design to the folks who first might need it the most and might have the most difficulty with it because of, say, language issues or access to technology. You're going to get a better solution in the end. Guaranteed. I promise you that.
But it's often those groups that are harder to access and so a lot of people are like, I can't find these folks or don't put in that effort. But I really strongly believe that we'll do better for everyone if we work with the people on the margins from the beginning.
Ambreen
I'll just add a bit to Omar's point, then add one more point. What we see is people coming in with pre-designed preconceived ideas and solutions, and then they take it like a cookie cutter and apply it to different populations. You're going to chop things off. Everybody isn't going to get it the way you designed it and for whom you designed it and with whom you designed it. Why not design with those that are most excluded and are going to benefit the most in terms of health gain? Because ultimately we know this. That solution is going to cross-cut and work better for everyone.
The piece that I'll add here is about power. Power is such an entrenched issue in patient engagement, and we've observed this so much over time and as part of our co-design work, too. What we say in EMPaCT is we flipped the power dynamics.
We are not picking and choosing 1 or 2 patient partners to come to an institutional health care setting. Instead, we have designed it so that we are a table or a group of majority patient partners and health care system providers request a seat at our table where we are the majority.
They have been trained and coached to come in and have an authentic dialogue. It's called flipping the power, and there is so much in terms of flipping that power that has enabled a safe space, authentic dialogue, and transformative discussions. We've seen people come in and literally we watch their eyes go, oh, I never thought of that. And a number of times Omar that we've seen that. And it all comes from that flipping of the power.
I'm going to plug in another paper that we've written about the power wheel and patient engagement. It's in the final stages of review. Once it's ready, I'll share that link with you as well Anna. It's a paper Omar and I and the rest of the members of EMPaCT have worked on, and it's about how we can transform spaces and places of patient engagement. Power dynamics enable perspectives of patient partners to be shared, particularly if you have a goal of advancing health equity.
Anna
Do you have any resources that you could share with people who are really interested in starting at the margins, but face pushback?
Be it from their co-researchers or from their institutions saying that they have to start first with the most generalizable segment of the population and then work outwards?
Ambreen
I think no one person can do this on their own. This is not a one man show. This is this is a team sport. So if someone is out there on their own as a researcher and trying to do this, it will just fall flat because you need to have team alignment. It's a marathon relay race, let's put it that way.
You need leadership involved. Now unfortunately leadership may be constrained by their own budget, may be constrained by their own strategy vision of the institution. What are the strategic goals? What are the strategic priorities? What's the bucket of money that I have to play with? And then all of that kind of trickles down into how the projects roll out.
The best bet is if the leadership is aligned, the institutional goals are aligned, and there is a bucket of money.
I would say unless all that is there, it's extremely difficult to be the person who's the face of this work, trying to fight all that and do all that. When I say I was enabled by my six year grant from CIHR, I was empowered to do this work because I was given time, I was given money, I was given recognition. It did all those things for me from a leadership level. CIHR funded this work to happen. I don't think it could have happened with just me sitting out there on the street saying, I need to do this. It would have never worked. So you need the leadership to see the value.
Once the leadership sees the value, then the teams below can work to negotiate their needs. For example, it's actually not going to take six months, it'll probably take eight because we feel we need to speak with x, x, x and it will take a bit of time. Then you have capacity to negotiate what you need to do the work well. And then we talk about, well, I need so many people to do this. I need the kind of money to do this. I need the time to do this. And then the person who's the face of the work is enabled. I don't think it'll ever work the other way around, actually. Or you can have a whole mobilization of researchers who are saying collectively in their collective voice, hopefully not screaming at the void, but collectively saying that we need this in order to do this work better.
One of the beautiful pieces about EMPaCT has been that we've got an evaluation of people who've come to the EMPaCT table (interviews and surveys) and will be publishing next year on the value that they got out of engaging this way. Those kinds of knowledge synthesis and knowledge products are extremely important. Once you write it up, it becomes more of an evidence-based way of doing things differently that is more effective.
Omar
To build on what Ambreen said, and this is not in the context exactly of EMPaCT, but in healthcare engagement in general.
If leadership is not on board, then you might actually do harm by trying to involve the margins while getting so much pushback from within your organization.
I've seen that happen elsewhere. Doing it strategically might be starting small, working with such a population to achieve something and then demonstrating that to leadership what you did. And you're slowly convincing leadership that this is actually a good idea, look at what's possible, before you get to the bigger projects. In the context I'm talking about, in one group there is talk now of actually hiring a community member with lived experience into the leadership team, paying them to be involved in the decision making and in the position of power. If a few years ago, community members and and the engagement folks had asked for this, I'm sure the answer would have been no. But there's been a lot of work to demonstrate the value of working really authentically with diverse communities to achieve equitable health care outcomes.
Because of that proven track record, with starting small and building bigger, you can get to the point where you can ask for the big things. So that would be my suggestion to the researchers who might be trying to do that — identify something where they can win and not harm the community and it can build from there.
Anna
Thank you. That's very helpful. And that's something that we heard as well in season one - the importance of legitimizing patient partners and creating designated positions for them within institutions. So that also makes sense then, in terms of having a set person or a position that also advocates at the decision making level for this type of research and the space as well. Before we lead into our last question,
Could you please share some of the impacts of EMPaCT?
Ambreen
We have a really fancy chart for this, and I'm not going to talk about the 20 different things that we have on it. We have grown from 2 to 19 people with zero attrition. As Omar said, one member of our group passed away. But we hold that person in our hearts, and their values are so entrenched in the way we are co-designed that they are always going to be a part of EMPaCT and the way we live and breathe as a group. So the group membership. I think when we just talk about patient engagement and then we talk about diverse patient engagement,
We've grown in numbers, we've received awards, we've done several publications where we’re now as a group in a capacity to be coming up with our own research questions.
One of the projects that we're working on is a theory of change. So when you're looking at an individual system and structural level, what are the different levels of change that need to happen to make the work that we did in EMPaCT possible in other settings?
We've also engaged with projects. So as I mentioned earlier, we engaged with projects at Women's College Hospital. We've engaged with hospitals across Ontario, institutions across Ontario, and now to pan-Canadian projects. So in terms of influencing equitable decision-making in a timely way for these multiple projects, we've been able to have our say and influence the way they take their directions. Keynote presentations, all those standard academic outputs that you look for. But I think really the key one that stands out for me is our membership as a group. And the fact that we are growing and we find such immense comfort in coming together and growing as that group, growing our relationships and nurturing and feeding that. For me, that's the strongest number on that table.
Omar
Yeah, I agree actually. I think you really can't underestimate the power of a good process to change the people who are involved. I could definitely refer to the projects that we've consulted and the help we've given them to improve those projects.
I think one thing that is very cool about what we do, which I wish all projects would do, is that part of the process is a report back from the projects. What did you do with what we said to you? Because this is something you'll hear over and over from patient partners everywhere. I gave my advice and who knows what happened to it, right?
So that's really important. I really appreciate that. I also feel like we, as members of EMPaCT, have changed. We feel more confident in our abilities to talk about our concerns and what we're hearing from our communities. I feel like we have our spaces to speak out about what matters to us. I feel like we're better at holding our power. That we have power to change.
I think it's so valuable for all researchers and engagement folks who might be listening to consider how your process with community members changes those community members and helps improve those communities.
I think that's a serious outcome I see coming from EMPaCT for all our members.
Anna
That's amazing. As we begin to wrap,
Is there anything that you'd like to share with our listeners that we haven't covered today, both in terms of impact or the importance of EDI in patient engagement in research?
Ambreen
I'll give general advice, and I would put it into into three buckets.
Engage with people. People are people. You be a person. Let them be a person. Let's not do the identity politics and let's not do a disservice to who we are as whole human beings and what we can bring to an interaction. So engage with people.
Engage with purpose. So think about it a little bit. Right. Why are you there? Why are you engaging with patient partners? And then if you're engaging with an EDI lens, why do you really want to do this? What is your motivation for engaging diversely? How are you going to create that inclusive space? And what change are you looking to bring? So that leads me to the third point.
Engage for change. We heard this so much when we co-designed EMPaCT. It's like there has to be a clear pathway to change or else we're not going to do it. So engage with purpose. Which part of your work are you going to change by talking to people? And you would think it's pretty simple. And Alies and I have been coaching people for three years now before they engage with the EMPaCT group, and it's not that simple. We really need a lot of directionality in the entire body of our work, and sometimes the mass of our project to understand which parts of this are most important for change and can actually be changed by the perspectives of people with lived experience so that it is better.
So those are the three. Engage with people, engage with purpose, and engage for change.
Omar
I think those are really perfect. The one thing I would add is
You have to give some thought to identifying the gaps in your engagement process and why you want to fill them in. Like I was saying before — if you're going with a checklist, that doesn't seem to be a bad thing, but then you should know why the things you're looking for are on that checklist.
Why is it that you want a a person from a certain community? What are they going to be adding? What do they get out of it?
For a lot of people, just the act of being asked comes with a lot of recognition that their input matters. But I really want to add this one part, which is you need to have some sort of recognition framework in place. I hear from so many community members that I work with about the frustration — you know, of course I want to give back to my community. I want to help out. But they said they were going to pay me or they said they were going to give this and it never happened.
As much as people do this out of the goodness of their heart, they want to be recognized. That could be a small honorarium. It could be a gift card. It could just be that there is some very visible recognition of their work.
I've seen in a lot of places that people don't get involved because they don't feel like their time is really being honored. And that that's a shame. So that's a really simple thing — have something set up to recognize the people who you've involved.
Ambreen
I'm going to jump in, Omar, because there's another project that that we've worked on. It's separate from EMPaCT, but it was an analysis of the Twitter hashtag, how not to do patient engagement. And again, that work is almost published [it has been published since recording of this episode — find it here]. It's in final stages of review and feedback. And one of the things that we propose out of that analysis is
Impact is not just an outcome of good patient engagement, it is as much the process.
Exactly everything that you're talking about Omar. It’s the intentionality of — what is the process impact on a patient partner individually and within all the steps of the work that enable their participation? Absolutely the project outcome is one goal, but there's also the personal piece. And it's some of the things that we put together — we call it the engaging for purpose framework in patient engagement. This is the fourth plug I've done for a publication and I'm sorry, but this is the work we're deeply entrenched in, we study the science of patient engagement, and how to do it better from a health equity lens. This is what we live, breathe, and work. So happy to share those publications as they come out.
Anna
It's so great to see you folks are publishing on all of your amazing work, because it's one thing to do things and keep them for yourself or to share them but with only those who directly cross your path. I think that another important step that we all need to commit to, and that we are all doing more and more, is disseminating our engagement work more broadly so that others may learn from it, even if they live across the globe or don't go to the same conferences as us, or whatever. So I'm really looking forward to reading all of your publications, and as I mentioned, will be sharing them on our website.
If anybody's interested right now as they're listening or they log off to find out more about your projects, something that worked for me was plugging into my browser, “EMPaCT diversity research” and your website will pop up right there. I'll also make the website available on our Substack.
With that, thanks again Ambreen and Omar for coming onto our podcast today. You've definitely given me, and I'm sure the listeners, a lot to chew on. For those of you listening, be sure to check out our website, asperusual.substack.com, for further information like resources from today's episode, as well as interactive transcripts from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. And for those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com.
Thanks so much for tuning in and until next time, let's keep working together to make patient engagement in research the standard, or as per usual.
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