It's Not a Field of Dreams - It's More: Raising Awareness of Patient Engagement.
Episode 4, featuring Rachel Martens and Christine Fahim
Meet Our Guests
Rae Martens is a Knowledge Broker with the University of Calgary, Kids Brain Health Network and CanChild. She has been a partner in health and policy research for almost 10 years. A writer and advocate, she has spoken all over the world about partnering in health research.
Dr. Christine (Tina) Fahim (PhD, MSc) is a Scientist for the Knowledge Translation Program, St. Michael’s Hospital and leads the Team for Implementation, Evaluation and Sustainability (TIES). She is an Assistant Professor in the Institute of Health Policy, Management and Evaluation at the University of Toronto, and an Associate Scientist in the Department of Health Policy and Management at the Bloomberg School of Public Health, Johns Hopkins University. She obtained her MSc in Health Systems at the University of Ottawa followed by a PhD in Health Research Methods, Evidence and Impact from McMaster University and a postdoctoral fellowship at the Johns Hopkins University. Dr. Fahim’s research focuses on the science and practice of knowledge translation to implement evidence-based interventions at the provider, organization, and health systems levels.
Contact the hosts: Anna and Bryn
Bryn
Thank you, everyone for joining us on As PER Usual, a podcast that explores the current state of patient engagement in Canadian research, and how to make it better.
My name is Bryn Robinson, and today we've got two wonderful guests to talk all about awareness.
In our study participants raised concerns about the lack of awareness of patient engagement that's still persists in the research community. After nearly a decade of SPOR in Canada, what gives?
Anna
Oh, boy, Bryn, what gives is absolutely right.
So, then, how do we move into a preferred future state in which there is widespread awareness of patient engagement and research, including of its benefits, preferred approaches as well as even how to get involved in it?
Our workshop participants suggested that enhanced knowledge mobilization practices, where research findings are readily accessible by the general public, is a step in the right direction.
This means moving beyond only publishing study findings in scientific journals, to also regularly sharing research, finding through a wide range of mediums and products, including podcasts such as this one.
Workshop participants also suggested that there needs to be an established space for current and potential research partners - including the public who wants to just get to know about patient engagement and research and health research in general - to connect, and that also publicizes ongoing and completed research, and hosts conferences and other public events.
So, these are two big picture approaches to increasing awareness of patient engagement and research. And with us today, we have two guests, Rae Martens and Dr. Tina Fahim, who will be sharing their individual and collective experiences with raising awareness for patient engagement and research.
Thanks again for joining us today!
Tina, could you start us off with letting the listeners know a little bit about your research background, and whatever else you'd like them to know about you? And then, Rachel, could you do the same?
Tina
Happy to. My name's Tina Fahim. I'm an implementation scientist at the knowledge translation program at St. Michael's Hospital in Toronto.
I really view myself as a methodologist and the goal of my work is to make sure that we're putting evidence into practice. We work across a number of different disciplines and different levels, and really just support different stakeholders to make sure that evidence is patient-oriented but it's also being implemented. Our projects range from everything to implementing clinical initiatives at the hospital level, to supporting policymakers to make sure that they're using evidence in creating policy. The common thread that we try to include in all of our projects is an integrated knowledge translation approach, meaning we really want to make sure that patients, or members of the public, are those who are going to be impacted by their research, have a say and share our research questions, our initiatives, our evaluation, and then, finally, the dissemination.
Rae
And for myself, I have the honor of living, working, and playing in Treaty 7 Territory in southern Alberta, and I function as a knowledge broker, which is a growing role, as of late, where it's an opportunity for people to go- for someone who works in this role, to go out into the community and to share the concept of research overall. To share that through information that might not necessarily be regularly democratized with a certain population of people, make connections for researchers and community members who might have an interest in partnering together, things like that. So it's a lot of- it's like being a bit of a research influencer or a matchmaker, but with knowledge; would be a short version of that.
This work has had me split my time between both McMaster University, as well as the University of Calgary with the Azrieli Accelerator. So, some of the work has focus on folks within the disability community overall in Canada, and that has had a variety of impacts over time - not only for with the work that I do, but also as a research partner with lived experience myself, and being able to share and reflect on those experiences in order to show other people what awareness raising can look like in this area, what it means to partner. and how that can fit in a person's life, too.
Anna
Influencer. That's the first time we've heard that mentioned on the podcast but sounds like a perfect term for especially this topic.
So, Rae, could you tell us about some of the cool, influencing activities you've been doing for raising awareness?
Rae
Well, one area that I decided to jump into with a bit of- with as little dignity as I have, I'm a bit of a goof by nature; I met my husband in theatre back in the day, in a mime troupe we were both auditioning, for ironically. So with the wedding, had a lot of goofy mime jokes along in terms of how we met… but that has offered an opportunity to take humor and talk about my own life and things like that, and do that on social media platforms like TikTok, and to contextualize the reality of what it means to partner, and how that can benefit from a variety of experiences.
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I've reflected on some of my work within the policy field, having gone to the UN twice, and considering that human rights is a significant knowledge gap with a lot of Canadians, I've helped have the opportunity to contextualize what this means during the last couple of years with COVID, helping defeat some of the misinformation associated alongside human rights, but also saying that you can still partner and participate, get involved and help shape big things along the way.
Some of the other experiences that I've had as well, too. I do a lot of writing. I've had a few exchanges within the community, just finding unusual spaces in which to share these experiences and help tell the story. I'm a big fan of the storytelling nature of that, and I do that through, not only just the dynamics of just the usual types of talks, but I do that through photography, too.
I get to share the reality of my life, and how that fits within the broader world. So, it's nice to be able to be creative in this space, for sure, and just to think about how unusual mediums can sometimes be more impactful in some respects.
Anna
That's so cool, Rae. I heard that you and Bryn once baked bread and talked about patient engagement and research.
Rae
That we did. That was a magical time.
Anna
That's so awesome!
And what about you, Tina? Could you tell the listeners a little bit about some of the initiatives you've been engaged in to raise awareness?
Tina
Yeah, absolutely. So, I think the number one thing is just given the nature of my role, we're often called in to consult on different projects, different grants, and so that's a really fantastic opportunity to work with different scientists and researchers across discipline and across institutions. And for me, that's really been a fantastic platform to raise awareness. People bring us in to consult on a very specific piece of knowledge translation or knowledge mobilization, but it's an often an opportunity to highlight to them how we can include patient partners on the grant, or how we can build in resources or research question that really emphasizes that patient voice.
I think being able to have those conversations very early on in the grant development process or in the protocol writing phase, has been absolutely critical because it allows us to think very early on about what resources do we need to do this meaningfully, and to think about that as an essential component and an essential objective of our research study rather than an add on, once we've kind of shaped our scientific objectives. So that for me, is really the bread and butter, is bringing it up in every kind of review, or a consult that we do.
But in terms of kind of a formal initiative, one that comes to mind is the Roundtables Initiative that we ran with the Ontario SPOR SUPPORT Unit (OSSU). So the OSSU actually funded a number of demonstration projects, and they provided seed funding to these different researchers to make sure that they had the tools and the resources to build meaningful relationships with patient partners, and then use that to fuel these projects. It's really nice; they had a whole supplement in the CMAJ describing the different projects.
What the OSSU wanted to do at study end was to have a dissemination event to really feature and showcase these projects and to talk about the impacts of patient-oriented research and also to look at lessons learned across the different projects.
We were brought into this initiative through the SPOR Evidence Alliance and we helped run these roundtables. We had 15 study teams that came together to present their findings, and we were able to bring together a really diverse group of stakeholders that included members of the government - federally, provincially, municipally - different research networks, different policy makers, health organizations, patient partners, of course. It was really an opportunity for these research teams, accompanied by their patient partner leads, to tell the stories about what they did, what they learned, and to disseminate their findings directly to these decision-makers.
And what result- we thought was going to be mostly a one-way dissemination, but it was actually fantastic conversation with people were able to showcase their their research, but it was also a platform for these policymakers to also give the researchers feedback about what they need, and what they need to make decisions, and what type of data and outcomes being even organized policy and decisions. So that exchange was really invaluable, and was really different than a lot of the traditional dissemination forms we’ve taken.
The other really nice thing is, we were able to kind of zoom out from the individual projects and think about what we need to do to change our systems, to be more conducive to patient oriented research. So, of course, we all know that there's time investments, resource investments needed to do patient engagement in a non-tokenistic way. But we are also able to zoom out and think about, how does our REB run? How was our data collected, and how our our process conducive to supporting this research or not? Some of the individual teams were able to change some of these processes through their projects.
So that was a really fantastic takeaway from that initiative is, there are a lot of things we can be doing at the system level to facilitate patient-oriented research and having that awareness by the people in charge of these systems was really fantastic.
Bryn
That's really interesting. And I had a question, but something you said, Tina, made me think I actually want to ask a different question now! This for both Ray and for Tina, and so maybe Rae, you can start.
So, the dialogue. That's interesting, because often times we do feel it is very much this out- just churning out stuff. But what kind of what kind of reaction, what kind of dialogue are you getting?
Do you think that's raising awareness more? Or do you think that you get - for example, on Tiktok, your videos - are you having dialogue that maybe you wouldn't have had - have conversations you wouldn't have had previously?
Rae
I have to some degree, but because part of the reason really ends up being, I think we- like study recruitment considers things as being transactional. You go out, you ask, you push the message and say, “Hey, we need you to do a thing.” Then you go do the thing, and then you publish the thing.
Whereas, when it comes to thinking about engaging and partnering - especially in a marginalized community, and in a community that's often had a high risk of paternalism, and had a lot of people dictating the story for them - this is an opportunity to think about engagement and that dialogue, as being something that people are not generally won over by a singular exchange in this respect. They need an opportunity to think about not only the full story, but about the evolution and where this fits within the framework of one's own complicated life and understanding. That, to make that first step, is an assertion of trust where there hasn't necessarily been trust in that system previously.
So it's complicated. But if I can bring humor, warmth, and but if I can bring humor, warmth, and connection in many respects - I mean, despite the fact that I may, identify as a part of the disability community myself, and have raised a child who was disabled, I still have my layers of bias that I operate from, so I try to do that, with recognizing that as well along the ways, too, and that gets recognized in that space.
And so I can walk within populations of people who may find the system suspicious, but also helped them to see that you can also do big things and create better things and build things, and really assert that term that it says in the Convention on the Rights of Persons with Disabilities, it's basically that we belong in designing spaces, and people want that to be seen.
And so that's one thing that I also bring to researchers as well, too, is that it's not just on moral and ethical foundation in which we do this work, it's literally part of our human rights system as well, too.
Bryn
Absolutely so.
And Tina - that's interesting that you got actually that kind of two-way dialogue. That's what I picked up when you were saying about the event.
How did that change, how things have moved forward? Do you try to encourage more like that?
Tina
Yeah, so I think what was really unique about it was, just like Rae said, it's one thing to send out a research brief, or to even put out a participant quote.
It's another thing to have a patient speak directly to a policymaker or a member of government about their experience in a research study and what they're going- to have a patient speak directly to a policymaker, or a member of government, about their experience in a research study, what their takeaways are, and what their concerns are, I think that voice is invaluable, and it really hits home in a different way
Even for us as researchers who are interviewing patients all the time, and having stakeholder meetings, when a patient partner co-writes an editorial with us, or speaks at a conference with us, I think it just lands in a different way. I think giving the space for that type of dialogue, where the message is not being filtered through a media channel, where the message is not being filtered through a media channel or through a researcher, where it's going directly, I think it's very impactful.
And creating spaces for that, whether it be something similar to what we've done, which is a round table, but also things like this, like podcasts and social media, where people can hear directly from patients who are leading this research is incredibly valuable.
Bryn
Absolutely and I mean, like you just said- you mentioned a number of different events in terms of knowledge mobilization, with podcasts, social media. Even more traditionally, there's there seems to be this plethora of things out there.
But after all these efforts, why is there still a lack of awareness?
I mean, that's what our study found. But maybe it's not. Maybe it’s a perception? Is it real?
I’m curious about your thoughts on- after all this time, we have SPOR, we've had it since, what? 2014? But there's still seems to be- it seems to be slow, and I'm just curious what your thoughts are about that level of awareness.
Tina
Rae, did you want to go first?
Rae
Sure, happy to. I think that there's a couple of layers to that.
In some cases, part of that is definitely system-wise, because there are many times where I find that there are things that we invest in, and we're happy that other people are doing, that we just don't want to invest further than what we have already.
And we need- when it comes to buy-in, it's not just about the fiscal, or funding these initiatives, and things like that: it's about really, truly, authentically believing deeply that this matters, for a lot of reasons. So there’s a need to think about how we change its’ perceptions in a number of different systems.
And I would say, as well, from a policy standpoint, not everybody is fully aware of what what goes on at a government level, in terms of these types of programs; while they know they exist, sometimes there's lack of investment and not knowing who's doing what and where all goes and things like that. It's hard to think about the complexities that we navigate within this world.
When it comes to other people, I think there are interesting models out there that have thought about things at scale like I think about- there's a patient community called Imagine Citizens here in Alberta, for example, that has well over a thousand members. They have thought about intentionally reaching rural communities and people who might have to travel like three hours to a local library in order to get internet access. They have got operated on very little, by way of budget, and have really made a mark on the province, in terms of saying that, “We're here, and we're ready to engage.”
But that comes with people who have the time, who are ready to invest, to go out and to share that message with people.
Part of that is, as well, acknowledging that there are people within the system who do have the capability, who have engaged for a while, who could exercise leadership qualities if they were given particular guidance.
One of the programs that I work with is called the Family Engagement [in Research'] Program, and the primary course is a ten-week course offering opportunity for people to come together, like researchers and community members, and learn about building quality relationships. But one of the next phases of our program has been the development of a Leadership Academy, which is offering people little characteristics and tools to help them understand what it means to advocate within their local systems, and help improve and advocate for engagement, and make sure that that happens in wherever they live.
And this is actually been a message that has reached a wide variety of people internationally - our most furthest student was from Suriname. People want to know what it means to advocate for this type of work, everywhere.
So, with that in mind, we give people an opportunity to do elevator pitches: if you had somebody trapped in an elevator that you wanted to talk to, can you talk about that next step in three minutes or less? Things like that. So that offers people that confidence, and to think about what it means to find a vision in improving engagement.
Bryn
That's awesome that- the leadership, it sounds fascinating. I've always watched from afar the research program, the family engagement one, so to see it take that next step is really encouraging.
Rae
For sure, and never know when that happens. I was at a random conference a couple weeks ago, in Toronto, and I ran into a politician I've just dreamed of having a conversation with. Unfortunately, it didn't happen in that moment, but it's just- it was representative of one of those things where you never know when that comes about. And you want to be ready and have that message in your back pocket to help move things forward.
Bryn
Exactly. That's awesome. Hopefully next time- there will be a next time; we'll put that in the universe now.
Tina, what, from your view, I mean - and I can understand maybe a bit, having done similar work with people. Like that constant, always seeming to have to raise awareness; that this is a thing that it's important to include.
Have you any thoughts on why that might still be the case, after all these efforts that we see on a national level provincial, what have you?
Tina
Yeah, no, for sure. I think awareness is improving, but I think one gap that I've observed is, sometimes researchers struggle to think, “Is my research, and is my question conducive to patient oriented research?”
I think they have a hard time, seeing how patient partners can co-lead the projects they have, because we're very set in our objectives and our PICO questions that are advancing our science, and so they have a hard time saying, “Well, how is the patient perspective going to be incorporated when I have a research question already?”
And so, I think it's a couple of things. Number one, it's a bit of a culture shift, and being willing to change your research question, or to add additional questions to reflect what the needs of the population are. I can tell you there's been entire grants that we've written just because our patient and community partners have said that this is important to them - and it was topics that we would have never researched on our own. But I think that's a culture, and you have to have an environment that's supportive of that.
The second thing I think we need awareness on: how to actually do patient-oriented research, and to show researchers that it's more accessible than you think, it is right, it's not an impossible feat, it requires some time, it requires an investment, but it is feasible, and it's feasible for all different types of research.
And so that's why I think it's been really fantastic to see groups like the SPOR Evidence Alliance, who do a lot of systematic reviews and meta-analyses - research that I think traditionally, we wouldn't think is conducive to [patient-oriented research], but they've developed entire methodological frameworks, and have a whole committee of patient partners who inform their research question and help define outcomes for their review, and then help write research briefs when the studies are done, and advocate for evidence being put into action.
So I think, more and more, crossing disciplines to talk about how to do patient-oriented research is really valuable, but I also think we need a little bit of work about multidisciplinary approaches to making research efficient and patient-oriented.
I can give a quick example from some of the work we did during COVID. We were approached by immunity researchers who really wanted to assess seroprevalence of COVID and long-term care populations. They approached us because we had relationships a lot of these long-term care homes, and what we said back was, “You know, this is a fantastic study, but we need to make sure that we're also addressing the needs of the long-term care homes.”
And what we ended up doing was running a multi-arm study, where we partnered with the homes. We did a needs assessment to figure out what supports they needed, help them implement their IPAC, their vaccine strategies. We implemented wellness strategies to deal with the mental health burnout that was going on in homes, and because we were able to build that trust and address needs, we were also able to facilitate the fantastic work of our colleagues that inform some of the vaccine policy in Canada.
And so I think, thinking about these things a little more creatively - that immunity research is over here, and health systems researchers over here, and CAM is over there - I think we can be a lot more creative and efficient to integrate [knowledge mobilization] POR in ways that we haven't been before. And I think, just to your point about awareness, we need a lot more capacity building on, if people want to do that, how they can do that.
Rae
One last point as well, too. I think this is a conversation I've had with a few SPOR-related organizations, and I think we all share a similar sentiment - that we all have a lot of these really great initiatives and programs that are there and available for training, but we haven't really consolidated what they do and help people have a better track and understanding. Like, “I have this goal to meet specifically in terms of where my awareness is or my knowledge is”, then, “Okay, then you go to this program.” You have a different one, you go to this program. Things like that. There is a need to start coming together, and thinking about how we can streamline that process a little bit.
Plus when you Google “patient-oriented research”, you have to know the term first. You can't just say, “I want to partner in research”, and get a really good formative understanding of it. It's not a concept with a digital footprint that's very intuitive for people who are very new to the concept as well.
Anna
It's really fascinating. All the work and thinking you're putting into - both of you - into really building bridges between research and the public, but then also bridges among researchers and the different organizations that are supposed to be supporting us all.
A question that I have that's something that I've been trying to figure out myself, to be honest, and also I know a lot of my colleagues are doing the same thing. It's the whole idea that, like yes, we need to raise awareness by moving our findings beyond just the traditional publications that you know; you don't even get a paper copy of them anymore. You have it saved as a PDF that you send to people.
So what are ways that researchers and patient partners, and whoever can really share their research findings beyond just going to a conference with your poster, or submitting it into a journal? What tips would you give to people about that?
Rae
It's a really great question. I think that, in some respects, depending on what your subject matter is, that really helps shape what sort of initiatives can come about. I have thought about this a lot from the policy standpoint, within the world of disability, because of the nature of the work, you have a number of different coalitions who work within the world of disability rights, things like that. Part of that is really coming together and starting to figure out unified ways in which you can have those conversations effectively.
For example, when it comes to shaping certain aspects of this type of policy or evidence that comes with having an awareness and understanding of court cases, in some cases, in terms of what's established court-related precedent, and that's not exactly in everybody's wheelhouse of knowledge to go down to the CanLII website and know how to search or interpret that, things like that.
So if there is a way to start thinking about court cases that could be relevant to people, in helping shape better aspects of research on a particular theme, when you all have investments in that, is to figure out ways how you can consolidate that knowledge together and talk about, “Okay, hey, BC is doing that. Did you know that they're doing that in education law?”, a different thing like that, where everyone attempts to kind of streamline some of the work associated with an overall long-term goal, if you will.
But some of that's really challenging, because it's very uniquely tedious, in a way, because part of it ends up being this particular demographic has a significant data gap associated with it as well. And people want that burden of evidence, but in order to move forward, we need to collect that evidence, and to think about how we can do that. We don't aggregate that really well, and we really need to think about moving that forward in more streamlined ways - but also involving community in that, in terms of what sort of repositories could be developed along the way.
Tina
Yeah, I totally echo what Rae said. I would say it's two main takeaways.
The first is, there's no “one-size-fits-all”- I think it will just come down to the research question, the population you're trying to reach, the issue. One thing we try to do is create an end-of-grant or end-of-project KT plan - knowledge translation plan - and we often involve our patient partners in that process to ask them, “Where do your colleagues or other patients or where do your friends reach out to get their information?” We tailor our products based on what they tell us, and they've been really different, depending on the community and depending on the topic.
Thinking about that upfront is very helpful and can help us save some wasted resources, chasing the video platform because we think it's a good idea, but nobody wants to watch a video. So again, listening is really important.
I actually just forgot my second point. It'll come back to me.
Rae
I think you're right, though.
I say this phrase a lot: “If you build that, they won't necessarily come. That's why community involvement is so important in this area.
Tina
Yeah, actually you've reminded me. The other thing I was going to say was, to your point of evaluation and measurement is - I think that's another thing we often see, especially when it comes to dissemination - we're often reinventing the wheel based on what we think are good ideas, and we don't have any evidence about uptake. And we're not investing in the measurements.
We know the list of different channels - whether it's research briefs or social media or Twitter - we know where we can disseminate, but for every project, we're just trying things out, and I think what would be very valuable, is to spend a bit more time in these process evaluations and track, “How many views did this get? Who's actually looking at this? Is it hitting the populations that we want to reach?”
Having that, and then contributing to a collective database, would be very helpful to say, “Oh, I worked in a long term care population, you know, the videos didn't work really well, but our our Twitter messages did”, or whatever it might be, could collectively contributing to that dissemination.
Science knowledge is really valuable, and I think is a really huge gap in the literature right now, both for patient-oriented research, but also just knowledge mobilization in general.
Rae
Absolutely, I completely agree, and I do wonder if somebody has been analyzing- like, one prime example for me is the dissemination that came about with the early phases of COVID. Twitter was constantly about the dissemination process at the time. I would love to know if somebody's looking into something like that, and seeing how that streamlined along the way when everyone had that focalized; it was a giant work group, if you will, in many respects. Is that being looked at somewhere? I don't know, but that's just one interesting example to me, that I would find personally very fascinating, to see what it means about international collaboration working in a variety of different streams.
Anna
That's so helpful, both of you, and it's such an important reminder to consider knowledge mobilization as an aspect of the research cycle because it is. And with that, to approach the question and its solution mindfully, and to not just start tweeting everywhere, or like trying to create TikTok videos. I don't even know how to download it, and just feel like I have to!
But to rather reach out to experts as yourselves, or other knowledge brokers, and to really start to think about, “What are the organizations that target groups that I want to reach and then how will I know I've been successful?” And its’ patient oriented researchers: Reach out to the communities, keep working with your patient partners and develop this plan together.
So that was really helpful. Next time I start to panic, I'm just gonna take a deep breath and devise a plan.
Bryn
I was wondering, too, Anna - you got me thinking about, and I think also to talk about the process evaluation. It often triggers in my mind questions of value - at least not from me, but certainly, when I was asked to “prove” that [patient engagement] works. That’s often a question. Maybe it's actually gotten better, I don't know; raising more awareness about the value of patient engagement.
Is it less conversations about that now? Is it more just showing examples of patient engagement in different research studies? Or is there still this need to convince people the merits of involving people that in decisions that actually directly impact them?
Tina
I don't have a numbers to quantify my answer, but I think one solid pitch that we often use is by involving patients early on, and really understanding the needs of populations, we're going to have less research waste, right?
We had lots of examples of implementing initiatives and doing something just because we think it's a good idea, and that there's been a lot of work in this space just showing that, often, we think we know. There's been a lot of work in this space just showing that often we think we know and we spend a lot of time and a lot of resources developing programs and apps and interventions that don't actually address needs. Even just thinking about a resource perspective, there's so much time and money and work to be saved by doing things more efficiently, by speaking to those who are going to be impacted by the intervention, and to actually listen, to hear what the problem. I think that's a fairly compelling message to send to policymakers.
The more we can quantify that, and show how the investment in patient-oriented research changed our plans, and writing process evaluations, and unpacking that black box about- like, often I see manuscripts, and it's like the whole study, and that's it. If we could write papers on that process: Here's what we originally planned, and here's how it changed, and here's how we engage people and evaluating how we're engaging people.
Just spending a lot more time in that process evaluation, describing it, collecting those metrics, I think, is so helpful and valuable to say, “We were going to do this, it might have cost us this amount of money, but we were able to change course and do things much more efficiently.” Again, thinking about investing the time and those evaluations can be very meaningful, and I think would be a compelling argument to policymakers, to researchers. And on the flip side, I think for patients- the patients also need to feel secure that they're not being involved in a tokenistic process, right?
And so, I think some accountability to say, “Here's how we intend to use your feedback”, or, “Here's how we're going to include you. Here's what we anticipate make sure that their goals and needs are also, being addressed.” To say, “Here's how we intend to use your feedback”, or, “Here's how we're going to include you. Here's what we anticipate.” Make sure that their goals and needs are also being addressed.
I think it needs to go both ways right? It's not just what compels researchers and policy makers, but what also compels patients to continue partnering with us.
Rae
I couldn't agree more, Tina, especially just you mentioning, touching on the notion of potentials for harm in this case, as well.
A lot of people that I work with, as our research partners, have struggled with this idea of thinking that their first exposure to the notion of partnership, and really ends up being an extension of their perceptions of how they've been treated in care. To me, I feel like this notion of partnership can be an extension of patient- and family-centered services in many respects, too. But in terms of how people see this type of work, some of that really comes down to- I think there's a depth that's really difficult to quantify in many respects.
I think about a dear friend of mine who teaches educational assistants, or future ones, in a university setting, and I sat in on one of her lectures. Once, she said, “If you don't feel this type of work in your bones, don't do it”, and I think that really is reflective of a lot of what goes into this work as well; that feeling that not only you see just from the metrics or in terms of analysis or evaluation, but also how your partners reflect that experience, too: as being community-based, as being something that they're attached to, that sense of pride as their first study is published.
All of these things talk about validation of one story. I've actually started talking about within some of my work, I created a bit of a mild, a small framework, on the evolution of a person's experience. I call it DICES-L, and it's basically from the path of discovery towards leadership, and there's even things like investment catharsis, empowerment; all of these things come into different facets of a person's complicated experience with partnership.
We don't really address the psychosocial aspect of what it needs to connect with the system to a degree where some you have that sense of power associated with that and what that relationship looks like, but also that potential and risk to harm in some cases as well, too, because we can mandate this work till the cows come home, but at the same time, you can skip a lot of the integral things, if you have a total disinterest in the work, and risk impacting people in very negative ways. So we need to think about the why and help people better understand that if they are working in this field.
Anna
And that’s such an important point to consider as we all work together towards raising awareness for patient engagement in research is to ensure that we never lose sight of really ensuring the capacity is there, as more patients do become patient partners, that our understanding of patient engagement in research, our collective approaches are there to help ensure that everyone has the best experience possible.
So many of these factors that we're discussing through our podcast are interrelated, and I'd love how every episode builds and ties to each other.
Before we wrap up, is there any one key takeaway or one key consideration that you'd each like our listeners, to walk away with when they are thinking about awareness of patient engagement in research, both maybe in terms of its’ importance, or how they can incorporate it into their own practice?
Tina
That's tough. I don't know if this is the single takeaway, but I think one important thing is, we need to think about this at a system level, and think about the way that we do research and fund research. There really needs to be a system-level shift in our investment, and there really needs to be a system-level shift in our investment in patient-oriented research. Putting these resources into building those relationships, building trust, making sure patient partners are compensated, making sure that we're supporting their needs as they give us their time.
Right now, grants are- funding agencies are becoming much more open to that, but it's still not mainstream. So I think that's one system change that needs to happen.
Also, from the university research institute perspective, as a scientist, there isn't really any metric that looks at your engagement and patient-oriented research. That's not something we are measured on; it's not something we are rewarded for. It's work that we do on our own - and that can be tough, with all of the other competing demands, when you have to show your funding and show your publications, there should be space to show that this work is important.
I think, if we're serious about investing in patient-oriented research, that also needs to reflect in our assessments and making sure that there's room for scientists to have protected time to do this work meaningfully, so it's not an afterthought once they've met the other demands.
Again, just from a system perspective, setting up research to facilitate these partnerships, reduce research waste, and let people know what's going on across different groups, the way we fund, the way we measure, I think that's really important. I think we'll make a much bigger impact if we think about this a little more holistically.
Rae
I think if I were to ponder- couple of things come to mind.
One of them is, don't do this work in isolation. Research has a way of making you just being, moving forward, doing your own thing, but in terms of the steps and the qualities that are necessary to partner with other people, find other people that can support you in your decision-making, how you strategize and how you plan - because there's definitely someone else who's thinking, “Oh, am I doing this right? Am I doing this well? Am I doing enough?”
Just thinking about a comment that I had with a researcher recently. It was that, if you are working on something long-term, consider how to incorporate planning into your work, to help your partners figure out how you want to say goodbye and close the door eventually when that study is over.
Because a lot of people, depending on the population that you work with, sometimes there are mental health aspects associated with partnering in this respect - and so, to offer them that space, to think about how they want to finish up this work, gives them that psychological opportunity to say goodbye in a very healthy way depending on how things go. Maybe they come back, but that's just an opportunity for them to evaluate themselves, what this experience was for them, and whether or not they want to do it again.
Bryn
That's wonderful. Thank you so much, both of you, for sharing your thoughts and generously your time, to share more about your experiences with awareness and your thoughts on some of these issues that we're all trying to wrestle with, in our studies moving forward.
Resources
This is a tool geared towards starting healthy conversations about where a patient or family member might choose to get involved: Designing a tool to support patient and public involvement in research projects: the Involvement Matrix. (Smits et al., 2020).
Identifying and Maximizing the Impact of the OSSU Demonstration Projects. (Cooper, Fahim, & Straus, 2022).
Let's keep taking these lessons forward to help make patient engagement in research the standard or As PER Usual.