Why should healthcare research be "by us," and not just "for us"? This episode of In Our VoICES explores the power of public and patient involvement in shaping healthcare research. Join guest host Laura Ferreira-Legere and ICES Public Advisory Council members Jenny Kirk and Jemal Demeke as they discuss the importance of lived experience, addressing misinformation, and ensuring research truly reflects community needs.
Welcome to our guest host, Laura Ferreira-Legere! Laura is Senior Manager of the Public and Community Engagement, Knowledge Translation team at ICES and works closely with the ICES Public Advisory Council.
Joining Laura are two members of ICES’ Public Advisory Council (also known as the PAC). The PAC was formed in 2019 and is made up of a rotating group of members from across Ontario who guide ICES on what matters most for health data research.
Jenny Kirk was a PAC member on our second cohort, from 2021-2024. Jemal Demeke is a current PAC member who joined the group in 2022 as part of our third cohort.
How did the PAC get involved in research?
Early in the PAC’s formation, they identified their participation in health research as a priority. The Applied Health Research Question (AHRQ) program at ICES acted as a mechanism to begin this work, which allows community groups (called “knowledge users”) to access ICES data and analytics to help answer important research questions. The PAC decided to explore mental health service use in Ontario, including understanding the reasons for visits to doctors or Emergency Departments, how service use may vary over time, and most importantly, how social factors like income and housing situation impact where people seek care.
Learn more about the PAC: ICES | Our Organization | Public Advisory Council
Learn more about the research project: ICES | Mental health-related visits to doctors and emergency departments in Ontario: a public-led exploration and analysis
Read more about patient and public involvement in research:
Evaluating patient and public involvement in research
Laura Ferreira-Legere
You've probably heard the phrase Nothing about us without us. The saying has a long history and continues to resonate with many different communities and movements who advocate for direct participation in decision making that affects them. But did you know this also applies to healthcare research, and that research being carried out with or by members of the public, rather than two or four them, has clear evidence based advantages. My name is Laura Ferreira-Legere, and I'm your guest host for today's episode exploring the power of research led by patients and the public.
Jemal Demeke
You know, we're talking about knowledge. We're talking about evidence, and I think a lot of people are starting to recognize the fact that like my experience is knowledge and evidence. I know what I went through, like I know what these people are going through. I can speak to that
Jenny Kirk
When it comes to health, like there is so much content available now that completely blurs the line between fact and opinion, and it can be very difficult to be able to identify facts.
Misty Pratt
Welcome to In Our VoICES, the podcast that takes you beyond the data to meet the people and hear the stories that help shape health and healthcare for all of us. ICES staff, scientists and partners are on a mission to make healthcare better and people healthier. In this podcast, we share our stories in our voices. A note that the opinions expressed in this podcast don't necessarily reflect those of ICES.
Laura Ferreira-Legere
Joining me today are past and present members of the ICES Public Advisory Council, also known as, the PAC. Jenny Kirk was a PAC member on our second cohort from 2021 to 2024. Jamal Demeka is a current PAC member who joined the group in 2022 as part of our third cohort. Jenny, Jamal, welcome to In Our Voices.
Jenny Kirk
Thank you, Laura.
Jemal Demeke
Thank you. Hi.
Laura Ferreira-Legere
So I'd love to start by having you tell me a bit about you know, why were you interested in joining a Public Advisory Council and maybe also what it means to you to be a Public Advisory Council member. And maybe I'll start with you, Jamal, if you want to jump right in.
Jemal Demeke
Sure. Yeah. So for myself, I feel well one I've always had a passion for community advocacy, whether that was from the form of organizing marches to working in a Human Rights Center. I always felt like there was a need to, you know, interrogate the systems that, you know, control how we live. And so I've always also had a passion for healthcare. And for a long time, I always thought that those two things were very separate, simply because I didn't have the exposure to understand how health equity is really become such a growing focus, and I've been, you know, appreciating that, and as I became a researcher then and started to really interrogate the way that things like racism, homophobia, sexism are really integrated in the way that health service delivery happens, not just in our own province or country, but across the world. I took a step back and thought, there are some really great ways that I'm engaged in the work that I'm doing right or even in the the academic pursuits that that I have, but I felt that I was a bit limited in the things that I could say there, but I'm still a person, right? I'm still a community member. I'm a person of the public, just like everyone else. I go to the grocery store and so I have thoughts that I want to express, and that's honestly what you know happened when I first saw the ICS public advisory announcement saying that they're looking for more people, I was like, "This is great," because I also have a passion for data, and so that's why I joined. And you know, what it means to me is really just again, as I said, an opportunity to be a human being. And that's what I feel like every time that I come into the meeting that I don't feel the pressure to have to say anything, I can say what I want.
Laura Ferreira-Legere
Yeah, I really appreciate that. And I think what always makes our meeting so interesting as well is that, you know, everyone wears many different hats. People have different backgrounds, different perspectives that they're bringing to the table. And I think what makes it so authentic too is that, you know, people come to the table exactly as you're saying, as who they are, and they're able to kind of bring those perspectives forward and the different experiences together.
Jenny Kirk
Yeah, I completely agree with Jamal. Like I it is a very welcoming and, you know, inclusive group. For me, I heard about the PAC when I was driving home from my friend's place in Ottawa, a former member, I guess, a member. He was on CBC radio, you know, talking about this, ICES and the pack, and I thought, "Oh, this is interesting," because at that time, I was looking for information to help me persuade the administration where I worked that the community that I worked with there was at greater risk. And I had zero to go on. And again, this was during the pandemic. And so I got home, and I googled it, and there was an article that was so persuasive and so useful—so useful for exactly what I needed at that time. And I thought, okay, these people. How can I help? What can I do? And so that winter I there, the little thing came up and said, "Join the PAC." And I said, Yes, please. I would love to join the pack. This is fantastic. And so, you know, what does it mean to me? It gives me a glimpse into, sort of what's going on at ICES, which is something I'd never heard of these guys before. And it's, it's amazing for me. It's a free education about what's going on in terms of research, and it's such a great opportunity to provide feedback. You know, when, when requested.
Laura Ferreira-Legere
I've definitely noticed, you know, there's a lot of passion for research now, and people want to get more involved. They want to better understand it. And I'm just wondering if you had thoughts on that, you know, thoughts on why the public maybe, now more than ever, really wants to get involved in research and understand it and just dive deeper into that world.
Laura Ferreira-Legere
Well, I think, I mean, quality research is, is useful because it like presents reality, right, like it's it's facts, or it's on the way to facts. And I think especially for the people of Ontario, like, it's such a great resource to be able to have access to the reality. Like, we can have this opportunity to have some participation with our own data. And I think that that is if there's an opportunity to get engaged, I think people will get engaged, and they will get interest.
Jemal Demeke
I'm gonna build on that. And I feel that there's a general, general interest in activism, in speaking your voice. People want to assert their autonomy or their independence, and what better space to engage that in than health right? That's something that we all share our bodies, that we care about and that we need to nurture, and that we need people to take care of, right? In this health system, and so without an understanding of what's going on in the health system, people feel like they don't understand what's going on for themselves, and also realizing the lack of information for certain communities over others, right, that a lot of the research does not focus on, perhaps, what black populations are going through, or rural communities, and so needing to put a spotlight on that. And so what this space then allows is just, again, an outlet, right to bring that energy, bring those fears from the world, bring that desire to you know, really be in control of of who you are, and make sure that the voices for before the people that you care about are included.
Jenny Kirk
Yeah, absolutely. When it comes to health, like there is so much content available now that completely blurs the line between fact and opinion, and it can be very difficult to be able to identify facts. And so, you know, if people are becoming more interested in health, it can come from sort of a place of misinformation or a place of information. And so it's great that ICES is stepping into this space to, you know, more and more provide information that's accurate.
Jemal Demeke
Yeah, I really like what you just said, and it makes me even think about how health and health care has been politicized, right? And that's been something that we've all seen through the pandemic, how vaccines, which, you know, for for the most part before was pretty standard in the way that we thought about it, but then now represented, you know, so many larger issues, some which I think are important issues that we do need to address, right around colonial legacies, around, you know, how healthcare and medical interventions have been developed, that is something that we do need to address. And that's the, you know, positive side of politicizing, you know, healthcare, because it's always been political. It always has, and now we're recognizing it. There's also the other side, though, right of people who are using health and healthcare as a way to weaponize that mistrust to get people to disengage even more, right and cause those divisions so that people completely remove themselves from accessing services. Because, although people have great reasons for not trusting, you know, medical professionals at the end of the day, as I said, we do need health care, right? We do all have bodies at the end of the day.
Laura Ferreira-Legere
It's a good segue in, because another thing I was thinking about was in a project we're going to talk about shortly, one of my favorite quotes in this work that we did together with the PAC, which I'll read, is "We realized early in the project that the goal was not to turn the public into scientists, and not to turn scientists in the public." Just wondering if you had thoughts on, you know, what does that mean to you? And then also, is there other ways we can think of how public or patient and scientific knowledge can complement each other?
Jenny Kirk
Yeah, well, what I sort of experienced while working on the PAC is you the researchers who are pure researchers, I think, may not realize the level of scientific literacy, sort of in the general public, and the general public includes people like politicians and journalists. And so I think sometimes, like, I agree. The public doesn't need to become a scientist, and the scientist doesn't need to become the public. But I think often it's easy, when you're extremely educated, to lose sight of how educated you are, like you don't recognize what the tremendous scientific literacy gap that exists between where you are and where the public is. And I think that when it comes to I think it could provide a useful reality check for people who are, you know, quite researchy. I think that people who are primary physicians, you know, interact with the public all the time, and probably tend to sort of get a sense of what people know and what people may not know. Because, yeah, there's not a way that someone like me could just walk into ICES and like, you know, make meaning of all of the data.
Laura Ferreira-Legere
But what we always try to explain is that you know, including engagement or including the public or patients or communities and the work you're doing doesn't discredit what you already know. In fact, building on it, it just allows you to see a different piece of the picture that you maybe didn't see before, and I think that's part of why the work of the PAC has been so important is, you know, it's kind of socializing, this idea that, yeah, there's a lot of expertise that comes from patients in the public, and it's not taking away from the scientific body of knowledge.
Jemal Demeke
You know, we're talking about knowledge, we're talking about evidence. And I think a lot of people are starting to recognize the fact that, like, my experience is knowledge and evidence. I know what I went through, like I know what these people are going through. I can speak to that.
Laura Ferreira-Legere
I was wondering what you both think about how we can make good quality research more accessible. There's a lot of misinformation out there. There's a lot of just overwhelming data coming at folks every day. And I'm wondering, you know, how do we get good research in the hands of the public in a way that's more accessible?
Jemal Demeke
This is a big question, right? And it's hard to encapsulate all the things, but one thing I'm I'm thinking about myself during the pandemic, when vaccines, you know, first started coming out, is I think one thing that helped is just recognizing and empathizing people's pain points. I think that was the main thing. And even in saying I'm not trying to convince you of anything here, necessarily, you're welcome to continue to think what you want to think. You know, believe what you want to believe. But here is just some information that I have that drew me to my conclusions. No one wants to be like chastised or talked to, and I feel that's often how it feels. So again, it's about breaking it all down, bringing it to a human level, and just saying, "Hey, I'm trying to help. Here's something for you to know, and you know, we can have a conversation and go from there."
Jenny Kirk
I agree like that, if you if you come at people from a position of authority or superiority, you're more likely to dig people in, right? They're going to dig in on their perspective. And it's never been easier to make a video. You can find whatever you want to support, whatever your your perspective is. And so I think the sort of the period of authority is kind of behind us. It's not sustainable and it's inhumane.
Laura Ferreira-Legere
And I think again, if we can come back a little bit, because I know we talked earlier about some of the mistrust in data, and we're talking about misinformation and all of that, and I kind of want to just come back and say, like, you know, do you think that the work of Public Advisory Councils and the public and patients being more involved in research like this: Can that help to rebuild trust? Or does that contribute? Or do you think it's we need to take it steps further?
Jemal Demeke
I don't want to put it as an either or, you know, I feel like we could all strive to do more, but I don't want to also downplay the significance of what we've already achieved together and what we've done. You know, there's kind of an exponential level of change that we can think about by involving one person into the process who understands what's going on. We have now equipped or enabled them to have conversations with everyone else that they're meeting, right? And talking to?
Jenny Kirk
Yeah. No, I agree.
Laura Ferreira-Legere
Thinking about the project that we did as a Public Advisory Council at ICES, where we actually, you know, from the onset, we explored a topic, then we got into the results. We determined what kind of products we wanted to put out there. And I do want to talk a little bit about that project, because I think it feeds into a lot of what we've been chatting about. And, you know, around the time when we started to think about doing this, and again, it was a request that came from the group as a collective voice, like, you know, we want to be involved in a in a project that actually kind of dives deeper into this. And ultimately, we landed on mental health, where we ended up landing as a group, was really exploring those social factors. So, you know, do things like income, influence where people are going for mental health care, things like neighborhood, like housing situation, and many different kind of social related factors. And so when we kind of completed our analysis and finished looking at everything, I would say the results probably reinforced what a lot of the group knew from lived experience, which, again, just kind of speaks to that expertise, like the science going hand in hand with the public experience. Did you have any initial reactions or thoughts, or really, kind of, what did you take away from from seeing these results?
Jemal Demeke
As you said, it really just reinforced, I feel what myself and a lot of other people, I'm sure, already knew when it came to housing being very important for your mental health.
Jenny Kirk
I realized it completely reflects my own experience. My younger brother struggled with early psychosis and addiction issues, and I'm not, you know, spilling his tea, or like he's passed away. And so it's, you know, there's not a privacy concern. He doesn't have family. But we were always in the ER. We were always in the ER, like, either he thinks he's having a heart attack from the substance abuse. Or, you know, he, you know he thinks that it's urgent to get, you know, a brown coat rack with five prongs, like we struggled from, like the year 2000 to the year 2004 to get him help. You can't self refer to many early psychos, or at that time, you couldn't self refer So, where do you go to the ER, will he come with me to other places? No, he will not. He was about to be homeless, and there just wasn't that wasn't an option. And so, you know, we talked to my mom, and, you know, cobbled together the $40,000 it cost to do it privately, and are the results in the research don't show all of the private activities that go on, right, that your people are paying for out of pocket and are only available for privately, that are necessary, but private. And so it struck me this week, like, yeah, no, this is I've lived this and I kind of didn't realize it.
Laura Ferreira-Legere
Thank you, Jenny for sharing that also, because, you know, we sometimes forget when we are just presented with this data, and we see a graph, and we think, "Oh yeah, like, okay, I see the trends. I see what's going on," but you forget that each of those data points is a person, a real experience of somebody that has gone through the system, and it's just not always reflected. And again, I just, I think it just comes back to this whole conversation and talking about the power of, you know, working with the public, and just kind of understanding or peeling back a little bit of those layers of what's really going on behind that graph.
Jenny Kirk
It's obviously such a problem or concern that has touched so many of us on the PAC. I mean, I think that's why we picked it right, like it's something that everybody can relate to, sadly, and so, yeah, I mean, among our group, among our family, among our friends, in our communities, this is a big problem, and that's why we prioritized this as you know, our question, because we want we want action. We want change.
Jemal Demeke
I suppose just a prioritization, at the very least, right? That all of this, like research, built onto each other, right? That's the point of it. And I feel like there's enough that we have, like build onto I think this is the piece we need. We're always talking about the lack of data here to prove our points as to what our experiences are. What we need now is this to reach that higher level of okay, this is now a priority that everyone has to create some type of strategic planning around.
Jenny Kirk
Yeah, I agree. And seeing my brother struggle with housing 100% due to mental health and addictions concerns, we have a lot of folks who are unhoused, and we're just, you know, at best, ping-ponging them in and out of the ER back back into the street. And then, you know, there needs to be something more, where people have some place to go, or some support beyond. What we're doing right now.
Laura Ferreira-Legere
Is there anything that you would want other patients or the public to know, if they're interested in being involved in research or interested in getting into a Public Advisory Council?
Jemal Demeke
it's really just you, you know, coming in as you are and who you are, to learn more and engage more and like it stops there. And who knows, as you learn more, your mind may change. I
Jenny Kirk
totally agree, like if you are interested in health or health concerns or the healthcare system, this is a good place for you to just come and see. Come and see for yourself if you are at all interested.
Laura Ferreira-Legere
Thank you, Jemal and Jenny for joining us today and sharing your perspectives and really helping to shine a light on the importance of meaningful public and patient engagement and research.
Jemal Demeke
Oh, yeah, thank you. Laura and ICES. It's been it's been great being here.
Jenny Kirk
Yeah. Thank you so much, Laura and Jemal. It was a pleasure.
Misty Pratt
Thanks for joining me for this episode of In Our VoICES. Please be sure to follow and rate us on your favorite podcast app. If you have feedback or questions about anything you've heard on In Our VoICES, please email us at communications@ices.on.ca and we'll be sure to get back to you. We might even share your feedback on a future episode. I'm Misty Pratt and wishing you strong data and good health you.