It Starts with Leaders: Integrating Patient Engagement into Our Systems
Episode 1, featuring Stuart Nicholls and Dawn Richards
Meet Our Guests
Dr. Stuart Nicholls is the Strategy for Patient-Oriented Research (SPOR) Program Facilitator in the Office for Patient Engagement in Research Activities (OPERA) at the Ottawa Hospital Research Institute. In his capacity as SPOR Program facilitator Stuart consults with researchers to provide methodological guidance regarding all aspects of Patient-Oriented Research. In addition, Dr. Nicholls provides training and education on patient engagement in research and actively contributes to research in this field.
With a PhD (Analytical Chemistry) from the University of Alberta, Dr. Dawn Richards has worked in a variety of roles over the past 20 years, however her diagnosis with rheumatoid arthritis over 15 years ago started a journey to combine her passion for science with making the most of her diagnosis. She founded Five02 Labs Inc to help people and organizations design and execute their patient engagement initiatives using leading practices and tailoring their approaches to meet their goals and patient partners' needs. She has contributed to the literature and practice in patient engagement on compensation, authorship, recognizing patients as people with skills and who lead fulfilling lives, and training on patient engagement in research. For example, she supports patient and public engagement efforts at Clinical Trials Ontario, the University Health Network, and CIHR’s Institutes of Musculoskeletal Health and Arthritis, and Infection and Immunity. As a volunteer Dawn is Vice President of the Canadian Arthritis Patient Alliance.
Contact the hosts: Anna and Bryn
Introduction
Bryn Robinson
So 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's Bryn Robinson and today, we're bringing together several experts to talk about the state of patient engagement in one particular area in Canadian research.
So what our plan is, is to bring together experts to discuss the results of Anna’s study that explores the perspectives of patients and academic researchers on the present and future state of patient engagement. Our goal is to provide practical tips for better patient engagement and, ultimately, create a community of practice that will empower listeners to begin making changes in the system.
So with each episode - this is our very first episode - from here on out, we're going to start with a review of one of the results from the study, and then we'll hear from our researchers and partners in the field who have addressed some or all of the topic. And then we will begin having more of a conversation with our colleagues, perhaps uncover some of the practical ways we can address the topic of the episode, and make changes in our own system starting now.
So, without further ado, I will turn it over to Anna.
Anna Chudhyk
Awesome. Thanks so much, Bryn.
So in our study, patient partners and academic researchers identified the need to better integrate patient engagement and research within and across the Canadian healthcare and research systems. They also identified three ways in which this can be achieved:
First, through the creation of designated patient partner positions at leadership and governance levels within research and healthcare organizations. For example, this could take the form of creating designated patient partner positions within, let's say, the steering committee that oversees the strategic visioning and operations of the center. These positions matter because they help ensure that patient engagement, related considerations and patient partner interests are always at the forefront of these organizations. These positions would also support patient partner involvement in setting research and healthcare agendas and priorities that would then hopefully lead to innovative research projects and patient-centered healthcare reform.
Now, another approach towards systemic integration could also include embedding the Strategy for Patient-Oriented Research, and patient engagement and research in general, within the pillars of the Canadian Institutes of Health Research (CIHR). This would help to ensure that the principles and foundations of patient engagement and research are represented within the fabrics of the institutes that make up [CIHR], and thus, within most aspects of Canadian health research.
Finally, the third suggested approach involved better establishing a bi-directional (two-way) relationship between research and health care to form a learning health system. Through these intricate connections between the Canadian research and healthcare systems, patient-identified priorities, outcomes, and perspectives are driving research - and patient-engaged research, in turn, is informing healthcare delivery and decisions.
Hopefully these ideas make at least some sense to everyone listening, but if not, fear not because we have two amazing guests that will share their experiences with these concepts and more, thereby helping to bring them into the realm of the tangible, as well as the doable.
So, to steal Bryn’s phrase, without further ado, we would like to introduce our two guests today, Dr. Dawn Richards and Dr. Stewart Nicholls, that'll be sharing their experiences and perspectives on systemic integration of patient engagement and health and research systems. Thanks so much for joining us here today, you both.
Why don't we start by turning it over to you, Dawn, and then Stuart, to share a little bit about your background as it pertains to research and experiences that you'll be sharing today?
Dawn Richards
Thanks for having me, Anna and Bryn. My name is Dawn Richards. I live, work and play in Toronto, which is the unceded territory of Treaty 13, and I'm grateful every day to live and learn on this beautiful land.
I'm an analytical chemist by training, which is really quite far from the work that I do today, but it was my diagnosis with rheumatoid arthritis almost 20 years ago that changed my career trajectory. So for the past 10 years or so, I've been working as a consultant to help people - it might be individual researchers, or it might be organizations - to do patient and engagement in research and healthcare-based projects. That might be from helping them develop a strategy, to executing that strategy, to helping them with tactical pieces associated with that strategy.
I've been really fortunate over the past many years to also contribute to the patient engagement space in terms of actually providing commentary and authoring - often with other patient partners - academic publications. People know me; I'm really passionate about authorship topics; I'm really passionate about the topic of compensation and payment. And I'm also passionate about the idea - which sounds ridiculous when I say it out loud - that patients are actually whole people that bring more than just their patient experiences - way much more - to the settings in which we work.
So, that's a bit about me and I'll pass it off to Stuart.
Stuart Nicholls
Thanks, Dawn. I'm Stuart Nicholls. I'm based at the Ottawa Hospital Research Institute, which is on the traditional and unceded Algonquin territory. I come from a researcher background; that's been my route into patient engagement and research, although this really goes back to the early 2000s, when I was working in the UK. My first role was what was called the “User Engagement Officer”, which was, sounds quite official, but it was very much about patient engagement (in that time, clinical genetics), and then in my own research roles, very much interested in the lived experiences of different healthcare policies, practices, experiences, health conditions.
That's been my trajectory, coming back to that in my current role, which I started in September 2020, working as the Strategy for Patient-Oriented Research (SPOR) program facilitator at the Ottawa Hospital. I do various things, from working with research teams to try and help them think through how to make their research more patient-oriented; we do education, outreach and training, and then we also do some work, matching patient partners with research teams as well.
So there's that, and then we do our own research into the methods of patient engagement and, and patient-oriented research. That's the main areas of our work.
Anna
Awesome. Thanks again for your introductions, as well as for being here today.
Stuart, would you now like to take the time to share with us some of your experiences with the Ottawa model for patient engagement, which you published on recently?
And I won't really take away Stuart's speaking points. But what I will say is that in this paper, Stuart and his colleagues present an institutional model for building infrastructure and capacity for patient engagement and research, within both the Ottawa Hospital, as well as the Ottawa Hospital Research Institute.
So, take it away, Stuart.
Stuart Nicholls
Thanks.
I should acknowledge before I start that I've been in this role since 2020, so my predecessor, Zarah Monfaredi, Dean Fergusson, and Claudia Hampel, who was at the Ottawa Hospital, really did a lot of the groundwork and built much of this infrastructure that I'll talk about. We've built on that over the last few years, but to their credit, they did a lot of this work getting things going.
I think the main thing that I would say is the driver behind what we've done, is the alignment of the two institutions. That really, again, goes to the leadership of the two institutions who have both committed to patient engagement.
So research is embedded in the bigger hospital mandate and its’ planning. Since the paper, both the research institute and the hospital have had a new strategic plan, and that's just further embedded patient engagement, both at the hospital and bringing the research into that.
That's really been great. And then, looking to existing guidance like SPOR; the original framework that we used at the Ottawa Hospital was taking those SPOR principles, and looking at how we can apply those locally. So that was sort of a big thing, and then from there it's trying to think, “How do we operationalize these different areas?”
As we mentioned in the paper, there's legislation on the hospital side, which mandated the formation of the Patient Family Advisory Committees - but we've built on that to say, “Okay, we don't just want one committee that serves the whole hospital.” We’ve actually developed multiple committees: There's a renal PFAC, for example, there's a cancer PFAC (PFAC is “Patient and Family Advisory Committee”). We now have what we call a Patient Family Engagement Program, that covers all of these, as well as a number of individual activities.
That's been driven, again, recognizing the legislation, but really trying to build on that and say, “Can we go above and beyond sort of baseline requirements to see what would actually work?”
On the research institute side, obviously we had SPOR to look to, and then we were able to leverage funding - and again, we can maybe come back to this at some point, but the funding is a key piece on the research side, I think. Being able to leverage that, to build infrastructure; my position, at least initially, would not have existed without that external funding.
And then, having the buy-in to develop a policy, so we actually have a policy that really emphasizes the importance of patient engagement in the clinical research we do, supports that, and gives resources and explains different roles.
Those are, I would say, some of the key drivers. It's building to think about how we can take that forward in concrete activities.
One of the things that's really been great is the collaboration between our office - I’m based in the Ottawa Method Centre, so that's basically a method support unit that exists within the Ottawa Hospital Research Institute - and then on the hospital side, as I say, there's the Patient Family Engagement Program. There's a lead for that program on the hospital side, there's myself on the research institute side - so seeing those synergies and finding ways to work together.
We've built a system where we can leverage the methods consultation process; we do a lot of consultation, whether it's for statistical analysis, or other help designing clinical trials, but we also have within that, our method support line around patient engagement or patient-oriented research.
And that's where I come in. Effectively there's a form online that people can fill in saying, “I'm looking for help in this area”, and if that happens, that request gets directed to me. I can then reach out to the investigator and say, “What can we help with?”, and we will either help from a design perspective, or if it's a patient partner matching request - so they're looking for patient partners to help provide input or collaborate within the study - we can then reach out to our colleagues on the Ottawa Hospital side to help with that.
Perhaps I should have taken a step back there; we don't have research-specific patient partners. One of the things we recognized early on (and looking at some of the other programs, and work we've seen around the world) that is a challenge, is that you might have lots of people wanting to be involved in research, but we work on a project basis. We try and match people really well with the particular [clinical] area of interest. We've seen in other programs where there's a lot of interest in being involved, and then, not really that many projects that are specific to their interest. One of the decisions early on was to say, “Actually, if we're gonna have patient engagement, let's work across both institutions, so people aren't left like that”, so they can be involved in different committees that draw on their lived experience, but also other areas of interest.
To Dawn - your point about people being more than just that lived experience, that health issue - we know that there are patient partners who have expertise either in human resources or finance or have done surveys or all these sorts of things. Our matching process is not just about that discreet health interaction, but we also collect information - or Ulyana Osorio, who is the Patient & Family Engagement Lead, collects information - about their general areas of interest. And that often brings out those other skills that people have, so that we can integrate that into the committees, or whatever they want to get involved with.
The reason we work across is to try and maintain that level of interaction, so people aren't just left waiting and we can have that ongoing interaction on the clinical side, on the research side, institutional governance, whatever it may be.
That's some of the fundamental infrastructure and let's say, well, I can talk about the other bits in the paper at some other point.
Bryn
No, for sure.
Dawn, did you have any, anything you wanted to build off of that?
Dawn
Yeah, maybe I can add to some of what Stuart has said, and I just took down some things, especially with things that I think start to emerge as themes about integrating this at an organizational or institutional level.
One of the organizations that I work for is one of the CIHR’s Institute of Musculoskeletal Health and Arthritis. Giant mouthful; I'm just going to call it IMHA throughout the discussion, I apologize! People are like, “Ugh, another acronym”; you just have to think of IMHA, it's the Institute I'm talking about.
IMHA is one of 13 institutes at CIHR, it's the one that I belong to as a person who lives with arthritis. I became involved, actually, with the Institute a number of years ago, when I applied to be on the Institute Advisory Board, which is usually mostly researchers, clinicians - academics, basically. And, I mean, I'm a safe target, because yes, I'm a patient, but I also know academic speak, and I know the system, right?
I'm not downplaying my amazing skills for why IMHA selected me to be on the Institute Advisory Board, but let's just be honest, I can easily integrate into the setting.
That was quite a few years ago, and people may know that the scientific directors of the Institutes at CIHR change; they have up to four-year terms and they may have up to 2 four-year terms. At this particular Institute - actually, ever since it started almost 20 years ago - the scientific director had engaged patients, or people with lived experience in some capacity.
As I mentioned, I came on as an Institute Advisory Board member, and was also part of a group called their Research Ambassadors. The Institute Advisory Board is not really governance, ‘cause they're not traditional governance; they don't make decisions, but they advise the scientific director as community members. It's a strategic role, right? They help in that capacity. The Research Ambassadors were a separate group of people who live with conditions under the umbrella of IMHA’s conditions, and they advise the scientific director on different things; might be funding opportunities that were coming along, it might be things that are happening at the CIHR level. It was interesting to watch, because some of the research ambassadors were fairly interested in that, but you could tell that some research ambassadors were a little bit more jazzed about, like, “How do I be involved in research?”, or maybe that's the kind of angle that they were coming from as well.
Over the years, that Research Ambassador group took on a different look and feel, according to who the scientific director was. Dr. Karim Khan came on, think just over, he's in his second term now as scientific director. I met him shortly after he came on board. He maintained the Research Ambassadors group, but you could tell, just to be honest, he wasn't really sure what to do with the group. There had been some turnover, and the group was primarily people who were really itching to do stuff, not just advise.
I was still on the [Institute Advisory Board] at this time, and so we had some discussions about the Research Ambassador group, and what was going on there. Karim’s a real champion for patient engagement; he actually brought me on separately to work around a day a week for the Institute, to reformulate the research ambassadors into what's now called the Patient Engagement Research Ambassadors, or PERA, Program, and to also think about, globally at the Institute, what the patient engagement strategy would look like.
I can talk more about the Patient Engagement Research Ambassador group, and some of what they've done, but a couple things that dropped out of what Stuart said to me here is, the important things that I found through that process, now going into fourth year with the Institute and its commitment to patient partners, and patient engagement, is resourcing.
As I mentioned, Karim brought me on a day a week to work with the institute, and there's other types of resourcing that goes into the work that the group does. So, an honorarium, plus other supports for the resources that that group independently decided to deal with. And then, as I've mentioned, a leadership commitment, like the scientific director is committed to this being a priority for the Institute.
I've since resigned from the Institute Advisory Board. Another patient partner has come in and been very strong on the board. We've just turned over the membership of the Patient Engagement Research Ambassadors group and we've got a whole bunch of other stuff that's going on at the Institute, too.
That wouldn't happen without leadership commitment and without the resources to do that.
So I'll maybe just leave it there for now. I know we'll probably talk about some of those other things, too, but that's just an overview.
Anna
Thanks so much, Dawn and Stuart. That's been such a good, interesting overview of basically what you've experienced in terms of systemic integration.
I was wondering whether either of you could maybe delve in a little, to help the listeners see a bit more about what you see as the benefits of taking this patient-centered governance structural approach, because it is quite different to the way that most institutes are set up.
So if somebody, let's say, is maybe part of an institute or launching one, or maybe they even have their own research program, something that they could maybe think about and reflect on and take back to those key players, like you mentioned, Dawn, with that to try and get some leadership commitment and buy-in? ‘Cause I know, for myself as a researcher, people are always interested when I tell them the type of work that we do: “What are the benefits? What do you get out of it? Why? Why should we bother?” - really, to put it crudely. So what would you guys say to that?
Dawn
Stuart, would you like to start or would you like me to?
Stuart
No, you can start.
Dawn
Okay. I'll kick this one off. I'm sure you'll have lots of other great stuff to add.
I was on a call this morning, Anna, where I was more representing a patient voice than anything else. It was really interesting to hear the researchers there, and the clinician there, talk about exactly what you're talking about. What were the benefits for them?
I always think about, when we bring patient partners on board, whether or not they've been engaged before, or they understand. In my world, it's mostly academics that I'm working with, whether or not they understand that they tend to bring just such different perspectives.
Because everyone else around the table, I'll say they've been indoctrinated - and maybe that's not the best word, but they're part of the culture, they're part of the fabric of the, “Oh, we don't do things that way”, or, “We've never done things that way. We can't do that.” I'm being completely facetious for the purposes of demonstration.
But they bring in this new, unencumbered - “What do you mean you've never worked with patient partners? What do you mean?“
The best is when you talk to somebody who's a researcher: “Our research is going to benefit X type of patient.” Have you ever talked to X type of patient about what it actually is like to live with them? “Well, no, but it's gonna benefit them. I know it will.” I just don't quite get, at this stage in my career, researching something that's a benefit to a group of people where you don't fully understand what it's like to live in their skin every day.
For me, it's bringing a different perspective of what it's like to live with that condition, or have that experience that you're interested in studying. It's also just about that fresh perspective from outside the walls of the organization that you work in - and whether or not what they bring is feasible is another story - but breathing in that fresh perspective can sometimes just turn a key in somebody else's brain, and it’s like, “Whoa!”, you just come up with these different outputs and different approaches that you never would have.
There is starting to be evidence, too, specific evidence, especially at PCORI, they're doing research on research: “What are the actual benefits of patient engagement and research?”
But for me, just having seen them firsthand, that's some of the things that come to mind. So, Stuart, I'll pass it over to you.
Stuart
Yeah, I mean, I think you obviously touched on many of the things. I always raise the question of taking this back to the motivation. For me, what the benefits are, are often aligned with what the motivation was in the first place and what you're looking for, because often you'll evaluate on different things, depending on what the motivation was.
Going back to some of the deliberative democracy type of motivations, for doing public engagement particularly, but equally patient engagement: if the goal is to give voice to those who haven't had a voice, then what you're looking for in terms of the benefits or the impact might be different than if we are saying we want to use patient engagement to improve the quality of our research (however we define “quality”.)
One route around that patient voice might be, “Are the questions actually addressing the needs of those populations?” If so, then you might be asking if you wanted to evaluate that; well, did you feel you had a voice? Did you feel what you said was heard, was taken into action? Those sorts of questions, and again, takes us to tokenism and, and those sorts of concerns.
But if your goal is to say, “Does patient engagement make our research better?”, from a design perspective, you may have different questions you want to ask. So for example, don't mention some of the impacts. There was a review, in the field of clinical trials, a few years ago, where they showed that patient - what was called patient and public involvement using the UK-based language - actually had positive impact on recruitment into clinical trials, for example.
That's a very different way of looking at it from an evaluation perspective in terms of those outcomes, but both may be relevant. And depending on your audience, you may have to leverage different types of evidence to show or to get buy-in. Again, I think depending on who you're trying to talk to, in terms of who those benefit, what those benefits are, you may be able to draw on different types of evidence. So I always think that's quite important.
Dawn
Yeah, and maybe just to build on what Stuart has said here, if you were to ask patient partners about the benefits for them, they may come up with some really personal descriptions in their own lives of how things have benefited them. So I guess it depends, too, on who you're asking about the benefits?
Bryn
You both mentioned leadership, that seems to be a really key component, and then resourcing seems to be huge as well.
When you think back to having to show people - and it depends on where maybe that researcher, that group is - the benefits of doing patient engagement and involving that collaboration, is it the leadership of the institution or does it start with the resourcing to start building, integrating it more?
Stuart
From our side, I think the leadership buy-in has to be that in order to get the resourcing. I think that's the way we've had it, and again, we've been very fortunate that we've got some, both at the research side and the hospital side, leadership that has bought in and seen the benefits and therefore, brought in actual resources, both financial and human.
We talk about the resources from a number of perspectives. Actually, that's going to be for us, one of the ongoing challenges, is that we've actually been quite a successful program. I understand the hospital is one of the bigger programs in the province, and now we're getting to the point of, “Okay, what are the resources we need now?”
Now we've got a big program, because the next question is, “What's the metrics they're going to start looking at?” In terms of the institutional, is it we have to have 10% growth in the number of projects, or how do we think about that? And we know that hospital budgets are under strain. We know that, so how do we work within those constraints?
So one of the challenges we are undergoing is how do we think about our current processes, and are there ways we can either improve those, reduce workload; or, how do we think about that, given the growth of what that means in terms of those resource investments? Particularly on the hospital side.
Dawn
Maybe to add on to that, Bryn. Yeah, it kind of feels like a chicken and egg question. Which I know, but I think maybe Stuart is right: You can't necessarily properly resource this without leadership support - and I'm not saying that it takes a gigantic number of resources all the time. I think organizations are worried about that. There's ways to start small and grow it.
But I do think, even when I reflect at IMHA, at the Institute that I'm currently working with, just over the years, there's been a different level of resourcing to it, and that does become reflective in what did the outputs look like. Are there things that come out of it besides meeting minutes that are tangible? Not to say it didn't influence a scientific director's thinking, but if you don't see or hear of something tangible, I think it's easy for an outsider to go, “Well, was that really worth it?”
I think Stuart's got a great point, too, about the importance of measuring and evaluating things because I do believe this is the right thing to do, and I do think there's moral and ethical obligations to yes, including people as partners in research, but I think if you can't properly demonstrate outcomes, it's really easy to say, “Well, that's not an important part of what we're up to right now.”
Bryn
Those are both really good points. I think what it's already highlighting - and I think both Anna and I knew this when we started this project - is how difficult it is to be discrete in the topics, because everything is so interconnected: resourcing in terms of compensation, in terms of measurement and evaluation, because that has a play on the integration. So a lot of these topics aren’t standalone topics.
As you were both talking, I get the sense that both you - well, maybe more so Stuart than Dawn, in terms of the institutions you were involved in - that there were already people there, leaders there that seemed to, in a sense, be aligned in the goals.
Dawn, you were saying, there was a changeover when Karim came on, and then he was very much of that mind as well.
I'm just thinking ahead, places that don't have as a robust model as both, with IMHA and with the Ottawa model, that maybe you’re thinking, “Geez, I really want to do this, I want to encourage this, how?” How would you encourage?
I guess when you're thinking about leadership in terms of a structure, in terms of an institution, and I realize that's maybe a really big question, but it's just where my thoughts go when I'm listening to both of you.
Stuart
Yeah, I mean, one of the things - and again, maybe this isn't some, I don’t know, chicken egg situation - but one of the things we've been working on is trying to pick it up on that evaluation piece; try and embed ways of capturing information that we can then use to leverage for more investment or to demonstrate benefits. I'll just give you a couple of examples that we touch on in the paper, but we've also built since.
I mentioned we have the consult request form where people can get the method support. So we have that as a metric: how many requests came in, where they're coming from, whatever. But we also realized that not everyone who's doing patient engagement and research at the Ottawa Hospital would consult us. The form can be a bit difficult to find, shall we say? And the other thing is, once people have got your name, it's easier to email you than fill out a form. So it doesn't all officially go through the system. Again, we've had to find systems to track this.
So we have a database that we've built, but then we were trying to think, what are the barriers to using that consultation form? It's maybe difficult to find, or not as easy to find, but it's actually adding in extra work.
One of the things we did was within the hospital when there's, within the research institute, we have processes where if people are submitting grants, they're supposed to fill out what we call an notice of intent. Basically it's an internal form that allows the institution to know what the resource implications might be should that grant be awarded: whether it's gonna need research, ethics review, animal, related issues, human resource issues, whatever.
So we worked with the institution to embed a question: “Have you already, or do you intend to engage patient partners in this research?” This is at the grant submission stage. While they may not have come to me for a consult because they know what they're doing, we can at least capture that information, that so many grants were going in that have indicated that they have or will be engaging patient partners. I get an alert when one of those notices is submitted, and I can reach out proactively then to say, “Do you need any help?”, whether it's matching or something else. So again, it's a mechanism.
We capture the data of how many grants were submitted, which means we can then say how many of those grants submitted were successful and how many of those successful grants. So for successful grants, we can actually, in theory, compare those that had patient engagement and those that didn't. Again, if one of our metrics is to try and convince people - “Actually you're going to be more successful with your grants maybe with patient engagement”, we actually have data to start to show that.
But it also again enables us to proactively reach out; maybe people don't know some about the matching system, or maybe they don't know about some of the resources we have, and it's another way to spread that message.
The other thing we've done on the other side is that, within our research ethics board submissions - and I can't take credit for this is our own dean, my predecessors did this - but within our research ethics board submissions, that there's the same question, “Have you or are you engaging patients as partners? And if they say yes, then there's a further question about where - is it the study design, outcome selection? All those sorts of things. And so again, if it's not been funded, if it's an internally funded project, or we don't have it tracked somewhere else, we can pull that data. We can start to build this sort of 360 degree picture of the research that's happening and look at that on an annual basis and look at where the patient engagement's happening. Is there an increase? What amount of funding? We can tie the engagement to the volume of funds that we're bringing in.
We have all these sort of data points we can start to show. So that's kind of one area where I think it goes to some of the things you were talking about.
Dawn
Maybe just to add a little bit to what Stuart had said there, I do think that doing patient engagement in research or establishing some process at an institutional level, leadership needs to buy in, or it needs to have a champion. I just don't think you can not, and it does take resources, and I think Stuart's touched on this. It might be a mixture of human resources, it might be some financial resources, it might be other resources. I don't want to give the impression that doing this well means you've got somebody in a closet doing this, off the side of their desk at the end of the day, when they've already done the rest of their job. And maybe I'll just put a plug in today: myself and five other patient partners published on what happens when patient engagement doesn't go well, because we've all had those experiences and I'd like people to learn from those.
And I'm not saying that's always gonna be the case when you don't throw a bunch of money at this, that’s not the message there. But I do think we have to be realistic. If an organization is going to undertake this, it does need some kind of leadership champion and it does need someone's time carved out, at least for some of the time, to be doing this.
And then I'll add, just like Stuart has talked about, at IMHA we have been evaluating how we've been doing with respect to patient engagement. We have been starting to look at the impact; mostly within the institute, because that's what we can easily measure. But we're starting to see, I'll say, the “tentacles” moving out from the institute. And those are good tentacles by the way, moving up from the institute in terms of having some influence as well, which is always really gratifying - as someone who's a builder and doing this type of work - to see that you've actually convinced others, or they see what you're doing and think it's of value and, I'll say, borrow, or are inspired by it.
That might be another thing that I put out there, is that I see a lot of organizations going, “Ooh, we have to build our own model. We need our own training. We need this.” And I'm not totally convinced of that. I think there's a lot of really good stuff that's out there.
Sure, there's room for a lot of other stuff, but I guess that's one thing to put out there, Bryn, is that for organizations that are worried about training and other things, there are some really good programs that are already out there. And so I see a ton of recreating the wheel on this space, which I think is very unnecessary and, maybe I'll say, might be potentially ego-driven by some individuals? Some individuals maybe just don't know there's other good stuff out, or they think their organization just really needs their own. But I think there's lots of good stuff that can be borrowed, built on and inspired by, et cetera.
Bryn
Yeah. I think you're nailing that there.
I've come across it, too, where there's folks that feel that sometimes it's KT, they just don't know what's out there. But then, like you said, I also have come across where it's like, “Well, we're just that unique that we must have a different model.” And in reality, sure, there's definitely individuality, but we're not that different when it comes to- that we could at least start, like you said- That's a great suggestion. There's existing training and there's lessons learned and the paper that you've shared as well, that you've just recently got published with your colleagues and, yeah, it's going beyond that for sure.
Anna
Well, I have a two part question, Dawn, really, I had the first question based on what you said, but then there's a second one that's related to what you said. So I'll maybe pose both, and then you can choose the order to answer them in.
I know Stuart, you as well had said that when you guys were developing this Ottawa model, you had looked to other types of organizations out there and great work that they were doing in this area as well. And you've just touched upon that, Dawn.
So if either of you have some places that maybe someone that's listening could also turn to, and what were these key resources that you found interesting?
We'll also include these within our Substack, as well as any others that perhaps Stuart or Dawn think of later.
And then Dawn, I was also thinking - because we'll hopefully have some patient partner listeners out there - I was wondering if you could also share, from your perspective, some benefits that you as a patient partner experienced from being involved in these key positions within these institutes, and being a champion of patient engagement, because I'm sure there's people who are debating, wanting to get involved, unsure.
So what would you say to them if you are a patient partner on the cusp - you see opportunities out there and you're like, “Ah, maybe? I don't know. Can I do it?” What would you say to them?
Dawn
Okay, so two-parter, fairly different. Maybe I'll start with the second question, Anna, ‘cause that one just seems to, like I've got resources that I can definitely mention.
But for me, personally, some of the benefits- so in the work that I do, I mean, I live with a chronic disease. It's got no cure. So my work is incredibly meaningful to me, because I can empathize with many of the people I work with about what their day-to-day is like. You don't know what's around the corner. Maybe you'll be fine, maybe it won't be right.
And I've been in those healthcare and research situations where I haven't been given much of a voice, or I've been downplayed what my perspective is, because somebody else didn't agree with it. Or a healthcare provider or someone else has been offended by the experience that I've had. So I think I'm extremely privileged in the work that I do facilitating patient engagement to be able to give people the opportunity to share their experiences in what I call a safe space or what, when I try to create a safest space as possible for people and give them an opportunity to hopefully be listened to appropriately, whether or not I can action, that is another thing.
But also in the work I do, I've gotten a ton of gratification from being able to show people how their often, not-very-great experiences have impacted a project or how that's changed our thinking about something. So for me, that's gratifying.
It's also gratifying to be able to take something that's been handed to me that is not great…like, “Oh, hey, you're gonna live with the chronic disease for the rest of your life ”, and actually turn it into something that's more than fairly positive. Being in grad school, sitting next to the instrument I built to sequence DNA, I didn't think in 25 years I'd be talking about this. What was this even 25 years ago? So I feel extremely privileged to do what I do.
In terms of encouraging other people: I mean, part of what I like [is] to be in the background, so I'm happy for other people to be sharing their patient stories, but working with them to make sure that if I can move that into action. For me, it's less about sharing my story.
And so, if they are interested in being patient partners, I think their motivations and understanding that are important, because to Stuart's point, that also helps people like us figure out where they might fit into projects, and what they might benefit from, and what they might bring. It's like fitting puzzle pieces together. If they wanted to be like a facilitator like me, then I think there's different skills and different potential benefits that are involved.
Like I said, when I facilitate things, it's less about me telling my story - “I've experienced that, I know what you're talking about” - but using that lens to be empathetic, to think about this type of space I would like to be created to offer compensation, because I know that that's what's important to me and is probably important to other people. I think it's just helped my lens. And so I would ask other people to think about, “What are your motivations and what would you like to get out of it?” Or what you can offer as either being a patient partner or facilitator.
Hopefully that makes a bit of sense, ‘cause I feel like I just rambled there for a lot!
Then in terms of some of the resources that are out there - shameless plug, with IMHA, we've got a patient engagement resources site. It's intended to be very practical, though, so if you're all about the theory and all the framework, so to speak, it's probably not the place where you're going to find things. But we've got lots of practical things about like, “How do you budget for this?”, or, “How would you evaluate this?” The Patient Engagement Research Ambassadors who we've been working with have developed these modules for anyone around how to do patient engagement in research, and there's tons of resources there. There's a template for you to download on terms of reference. There's other things that are referenced there, too. So that's one thing.
I know that also out of Quebec, [the Center for Excellence on Partnership with Patients and the Public] have also developed some really good resources. For me, that's another place to go. I know many of the SPOR SUPPORT units also have great collections of resources, some of which you can actually filter through. So I think those are some good places. PCORI also, in the US, has a lot of stuff and in the UK, INVOLVE has a searchable thing that you can go to on their website where you can download a lot of practical - I'm into the practical.
I mean, the theoretical is cool from an academic perspective, but to tell people that you could get funding to do this and not provide practical resources is a real miss in my books.
So I'm all about the practical: how do we actually get people to be able to do this?
Stuart, you've been waiting so patiently - on over to you now.
Stuart
No, I absolutely agree. And actually, Dawn and I both presented at the same conference back in November last year, and I think both of us have seen, not a complete change, but more movement from, “Why do patient engagement?”, to “How do I do patient engagement?” I think we've seen a change in that emphasis there.
That's definitely my role; a lot of the questions I get, “Well, how do I do that? What should I put in this?” For me, we always have things like, if we want to do an advert, when we speak to our researchers who want to match with a patient partner, would say, “Well, let's start with a very short one page, not much more than a paragraph summary of what you are looking for.”
So again, sent the Center for Healthcare Innovation: “We've got a great one pager of what to put in an advert, and actually we worked with a patient partner to develop it.” And then I found this resource, and they were like, “Oh yeah, these are the same thing!” So that again, emphasizes that's probably a good resource for me. So I don't need to invent, reinvent a new resource for that. I just say, “Okay, I just share that one pager.”
Now, terms of reference, we always, when we work with researchers, we say, you know, really developing a terms of reference whereby you work with the patient partners to set out like an agreed set of things that will happen. “Why are you doing this project? What's the background? Who's gonna be the contact person? What are the expectations around time commitments? What's the compensation?” You know, all those sorts of things.
Another thing we've tried to do internally is work with our researchers and say, “Can we share your examples with other researchers?” So again, you're seeing diff- not everyone's gonna do it the same way, but you can see, okay, these system seems to be like core information, to get us a first draft at least. And then again, working with your patient partners to come up with a final document budget calculator. Again, that's another one from, from Manitoba; there's a nice Excel file there, which I always share if I can.
And grants for researchers, getting their okay to share grants examples is really helpful. “What do I put in this grant?” It's a planning and dissemination grant. “Well, how do I write that?” Okay, well, let's get some examples.
So part of the motivation actually we took behind the paper that we published was just the desire to get these very practical things in the public domain. As you know, as Dawn mentioned this, I think Trish Greenhalgh published a paper that there are 65 different patient engagement frameworks. And Anna, I know you've published reviews as well, so we have a lot of those sorts of things. What we don't have is, “Actually, what resources do I need to do X?”, or these very practical things that maybe aren't quite as academic in terms of their status, but from a practical point of view, really helpful.
So that was the reason, or one of the main reasons behind our paper, and one of the things we asked for is it would be great if other people would publish what infrastructure they have, or what resources they needed to do these sorts of things, so that we can start sharing that. Because, as Dawn rightly said, there is a lot of duplication in this space of resources.
Actually one of the good thing things we could do - and again, you know, we've got the SPOR national training entity - one of the things I'd love to see: let's distill down what are the- can we find a way to say, “Actually, this is a really good resource in this space.”
Not to say we don't have new versions, but let's try and get a sense of what we really need on which maybe we don't need quite so many of… so, and again, that's something we're hoping to do with some of the other collaborations is find where those needs still exist and areas where we've got plenty of stuff to already look at.
Bryn
Those are both great, and I think it lends itself well to a final question before we wrap up. And I think - you can certainly pick from something you've already said actually, because you've had a lot of wonderful examples and references that we’ll be sharing on the Substack, so that folks can also take a look at them as well.
But if you had to name one thing - one practical thing someone could start doing tomorrow to help with integrating more of this into our systems - is there something you would just point to? Even one thing to get folks started?
Or maybe it's too big of an elephant to chew?
Stuart
I don’t know if it is one thing in terms of an item, but one of the things that's we've looked at is, is trying to make sure. If you can fit it within halfway, some of the metrics- for example, I say, the things we're conscious of is if we're trying to integrate things, try and find ways in which we don't add lots of extra work. Again, research ethics, board submission, they already have to do that for every new study. So adding an extra question isn't a hugely onerous thing versus here's another form you have to fill out completely separate.
I think from an integration point of view, finding ways we can embed it in existing kind of pathways or frameworks or things like that can be very helpful, as opposed to creating a whole new pathway for something.
Dawn
That's a great point, Stuart. I like that idea of- ‘cause you don't wanna place all this. I'll call it burden, even though I don't see it as a burden, but many people…like it's another thing I have to, I just figured out how to fill out the KT section properly on my grant application, now I got to do this section? So you just get a giant eye roll when they think it's going to be a huge amount of work, which I love. Stuart, if you can convince them it's not, you can still get them to do a great job. That's really important I think. So I love that perspective.
I think my big thing for people who are like setting out is to actually spend the time figuring out why you want to do this. So what's your actual motivation? Because I think, if your motivation is genuine, your engagement is going to be authentic, and the processes that you roll out that are aligned with that are going to be authentic.
I do think that people can figure out when this is nice window dressing versus, “We are really committed as an organization to do this.” I think that that's a really important thing, is for people to have that sorted out and appropriately articulate before they start to toss things at the wall that stick.
Bryn
That's wonderful. Thank you so much both of you. Anna, is there anything you wanted to say or ask before we wrap up?
Anna
No. I really especially loved your last point, Dawn, because I find that's the same thing when researchers or patient partners come to me, and talk about really wanting to step into engagement. That's the first question that I asked, because through that, I think you also help people figure out the key tenants, and that is you're working with patients, caregivers, other consumers of the healthcare system to learn from them. And in order to change your practices, learn how to study, what you should study, and how to do things differently. Through that question too, you start to just fill out the people who maybe don't quite understand what patient engagement is and rather think it's maybe talking at patients, caregivers, other consumers about what you're going to do and getting them to nod, right?
So I find that in so many aspects is such a powerful question: “Why do you want to move into this?” And then through that, ironing out your intentions and then setting up, map out a plan in order to achieve them. So I think those were beautiful parting words.
Bryn
Thank you so much, both of you for joining us today, on a Monday no less! Really appreciate you sharing your expertise and your time with us so generously.
Resources
Facilitating and supporting the engagement of patients, families and caregivers in research: the “Ottawa model” for patient engagement in research (Vanderhout et al., 2022)
Reflections on patient engagement by patient partners: how it can go wrong (Richards et al., 2023)
Recognizing patient partner contributions to health research: a mixed methods research protocol (Fox et al., 2022)
Patient and public engagement planning template (NL SUPPORT, 2023)
Case study of scoping reviews of patient engagement in research (Webinar)
Let's help make patient engagement in research the standard or As PER Usual.