Sixty-Five Guidance Documents Later... Compensating Patient Partners in Research
Episode 2, featuring Maureen Smith and Grace Fox.
Meet Our Guests
Grace Fox is currently a Strategies for Patient-Oriented Research Assistant at the Ottawa Hospital Research Institute where she helps researchers and patient partners navigate patient engagement in health research. She recently graduated from the Master's of Science in Epidemiology program at the University of Ottawa where she focused her thesis on understanding the current landscape of patient partner compensation. Her thesis included 1) a systematic review to assess reporting of patient partner compensation and current practices, 2) a survey of researchers and institutions to identify challenges and barriers to compensation and 3) a scoping review to capture published guidance and policy around patient partner compensation.
Maureen Smith has a long history of collaboration with the healthcare system subsequent to a rare disease diagnosis in childhood. She had the privilege to be a member of Grace’s thesis advisory committee as she explored compensation from an institutional and researcher perspective.
Contact the hosts: Anna and Bryn
Introduction
Bryn Robinson
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 have a hot topic!
In our study, participants noted that, across projects and institutions, there's a lot of variability in how a patient partner can be paid for their involvement in research - if they’re compensated at all!
When policies are inflexible to different financial needs of the partners in the projects it tends to affect more of the people who are marginalized and heard from less. Patient partner compensation is a topic that always comes up when we talk about patient engagement - and for good reason: by not paying it, it signals a value proposition that not everyone around the table is an equal partner, despite what words may be said ahead of time.
But aside from that, there's a lot of nuances that we're really excited to explore, and to get us started, Anna is going to share what she found in her study before our expert panel today joins and expands with their own experience and research.
Anna Chudyk
Thanks Bryn. Not only did our study identify the compensation-related issues you mentioned, it also identified characteristics of a preferred future state for patient partner compensation.
In this preferred state, compensation practices have evolved to diminish the power imbalances that exist between academic researchers and patient partners, to support patient partners feeling that they're valued and equal members of the research team, and help remove financial barriers that prevent many patients and caregivers from becoming patient partners in the first place. In this preferred state, patient partners are also regularly hired onto studies full-time.
According to our study participants, two key mechanisms that contribute to the achieving and maintenance of this future state include universal standards and guidelines that are consistent, and equitable compensation practices which are flexible enough to allow for consideration of unique needs - like, let’s say, patient partners that are on fixed incomes and are adopted by universities, research bodies, and researchers in general. They also include streamlined policies that come to be when institutions have resolved university and funding agency policies and structures that not only complicate, but limit and slow down, how and when patient partners are compensated.
So, that said, in today's episode, we have Maureen Smith and Grace Fox on with us to share their insights on patient partner compensation based upon the research that they have conducted together on this topic.
Let's dive in by having you, Maureen, and then Grace, share with the listeners a little bit about your background as it pertains to research, and the experiences that you'll be sharing today.
Maureen Smith
Thank you, Anna, and Bryn. It's wonderful to be here today with Grace.
Just a little bit of background of why I'm here with Grace. Grace is a star student who finished a Masters of Epidemiology, and her thesis topic was patient compensation from the institutional perspective. Grace invited me to be part of her technical advisory committee at the University of Ottawa - so just that, in itself, is an accomplishment: that students who are working in patient engagement topics are actually inviting people with lived experience to actually be part of their technical advisory committee.
I, along with 3 or 4 professors, worked with Grace, but Grace did all the work!
I'm gonna be very clear. It's Grace’s research; she did all the work, and we supported her, and I met with her regularly with the entire team, and alone with Grace. It was an absolutely wonderful experience.
So you wonder why she only had one patient partner? It's because her focus was really on the institutional barriers and the institutional perspective. But even with that, she had the wisdom to say, “Okay, it's not a patient perspective on compensation, but I still should have a patient perspective.”
Because I'm a patient partner, I'm from the rare disease community, I've been doing all kinds of engagement and all kinds of work in the patient engagement field for over 20 years, and I do partner with a lot of researchers and do encounter all kinds of compensation issues - and you're right, Bryn, it's a hot topic - when I was afforded the opportunity, I said yes immediately, because it was, I think, that I was able to sometimes frame things in a way that was patient, friendly, and make it that our perspective, even though it wasn't built on that, was still there and all of the terminology, and everything that was used, were things that are in our lived experience.
That's my background. And I do a lot of pediatric rare disease, research in core outcome sets, and methodological research and a lot of evidence synthesis. It's just the compensation issue over the last 5 years, I would say, has really increased; when I started many years ago, it wasn't even a question - like, there was none.
And then it started coming in, so I'll stop there and let Grace introduce herself. But I'm really happy to be here today with Grace, because we had our wonderful working relationship, and as much as I was able to contribute, I learned a tremendous amount from Grace.
Grace Fox
Thank you, Maureen. I mean, that's quite the introduction! I don't know if I can follow up with that, but my name's Grace Fox. I'm a research assistant currently at the Ottawa Hospital Research Institute. In my role there, I help researchers and patient partners navigate patient engagement in their research, and one of the main areas is in compensation: how to recognize patient partners for their contributions to research.
I'm a recent graduate of the epidemiology program; I just finished my masters at the University of Ottawa, where I focused my thesis entirely on recognition of patient partners for their contributions to research.
Throughout my time, working on my thesis, I was supported and guided by an amazing team of my thesis advisory committee. Maureen sat on that committee as well, and I think Maureen and I met maybe the most throughout that year. It was really, a lot of work was done in that year, and none of it would have been possible without such a supportive advisory committee.
I learned a lot from the thesis findings, but a lot of the recommendations that I take forward in my role as a researcher, I learned from Maureen, a lot of recommendations about how to talk about compensation, and how to navigate these discussions.
A little bit about my thesis work without getting too into the findings: We conducted a systematic review, first to assess the current landscape of patient partner compensation. We looked at a cohort of published patient engagement in research, and assessed, you know, how often is patient partner compensation reported, and if so, what are the current practices? Just to gain an idea of the current landscape.
And then later, we surveyed the researchers, as well as their institutions that were identified by the systematic review to gain a better understanding of challenges that they've experienced or any barriers that they've experienced to compensation beyond what was reported in their manuscripts, and that our last project was a scoping review to look at or identify all available guidance and policy around patient partner compensation. Documents that aim to support researchers and patient partners in navigating compensation.
So, that's a little bit about me and my background.
Anna
Thanks so much for that warm introduction. And it's really nice to see when patient partner/ academic researcher relationships go so right, it just definitely serves as an example of what we all aspire to. Maybe you two could get together as well one day and do a critical reflection that really outlines what the strengths were, and how you fostered what is evidently a very close and positive relationship!
So that said, do you think you could maybe dive into a little bit - Grace to start with, and then Maureen - what the findings of your scoping review were?
Also, I know that you're doing some follow up work as well, to apply the findings and build on them, and to also help evolve the field of patient partner compensation, Grace. Maybe you could share a little bit about that as well?
Grace
So from our systematic review, we found that we identified 316 studies or examples of patient engagement in research, from which I think 79 reported offering financial compensation to some or all of the patient partners on the team, so that is about 25% - a little bit higher than we expected, but the studies that we identified, they also reported patient engagement in accordance with the GRIPP2 checklist for the guidance for reporting involvement of patients in the public. So it was reasonable to assume that they may be more likely to report on aspects of engagement, like compensation, if they are reporting in accordance with this checklist, but nonetheless, we did also identify some challenges to offering financial compensation, including lack of guidance as well as institutional support.
And so those findings were mirrored in the survey, where we found that both researchers and institutional members were reporting “lack of guidance” as a key barrier to offering financial compensation to patient partners. That was a very interesting finding considering that, in conjunction with that, we're doing the scoping review, and we identified, I think, 65 publicly available guidance documents? This highlights a clear implementation gap.
I do recognize that lack of guidance can mean more than lack of policy or guidelines, but nonetheless it highlights this implementation gap that maybe patient partners, researchers or institutions are not aware of this existing guidance, or not using it for another reason.
That was a very interesting finding, and the basis for what we're trying to do now, which is really bring key players- like Maureen said, I focused a lot on the researcher and the institutional perspectives. However, we can't ignore the patient partner perspective here, clearly. So we are extending an invitation to researchers, institutional leaders, patient partners, administrative professionals, legal experts, financial experts to attend a meeting, which we were just awarded the CIHR Planning the Dissemination Grant to support this meeting, so very exciting that we're able to continue this work. The aim of the meeting is essentially to dive deeper into these challenges that occur for all these key players, brainstorm solutions to how we can overcome some of these challenges, and really continue to support compensation practices within this community.
Anna
Awesome, thanks. So much for sharing that information, at just the right level of detail.
Maureen, would you like to share anything about the findings of the review? Or perhaps anything that stuck out just as a patient partner?
Seeing that focus among academic researchers and institutions, and how that maybe mirrored your own experience as well as- I know the vast network of patient partners you have.
Maureen
I think I'd like to respond by talking about what resonated with me from Grace's research.
I was really excited that someone was taking this on from the institutional perspective because there's been several really good important articles written by patient partners, such as Dawn Richards and people like Laurie Proulx has written, and Isabel Jordan, that group, they've done a lot of really good work.
Patient partner compensation in research and health care: the patient perspective on why and how (Richards, Jordan, Strain, and Press, 2018)
Patients as partners in research: How to talk about compensation with patient partners (Richards, Jordan, Strain, and Press, 2020)
Identifying potential barriers and solutions to patient partner compensation (payment) in research (Richards, Cobey, Proulx, Dawson, deWit, and Toupin-April, 2022)
It's very instrumental work in that, but we haven't seen anything really from the researcher's side. They do hold the power, so we can cry as loud as we want, but there's still a real power imbalance.
I was really excited to see that when Grace showed us her findings. It really resonated for me. For example, with the lack of guidance, there's 65 publicly available documents, but there's no real guidance, because well, who's going to use what? What do we recommend? Do people know about them?
I'm going to tell you that, about almost 3 years ago, I made a pledge. I'm one of the people who's been doing this for many, many years without compensation. Never asked for compensation, and never had those conversations, and I was always very shy to have those conversations, because I come from an older era where people did it as volunteer work (I started 25 years ago in this area). You have to see it from where I was coming from. And then, people started offering compensation, which is great.
I have restrictions - because I have tax restrictions - and so I'm also very careful about what I can and can't accept, and that's fine. It has to be very clear. But a couple of years ago, I worked on a big project, and with a very, very big budget, and there was no compensation offered - and it was a really big budget - and that day, I said to myself, “That's it.” That was the straw that broke the camel's back.
So every project that I'm on, I ask about compensation. I may not accept it. I may not be able to accept it, and they may not offer it. But I opened the conversation, and I can tell you that was very difficult for me to do, because it just wasn't in my nature to do that, and I forced myself to do it for myself and for everybody else coming after me.
Now I make sure, if I'm participating in writing a protocol, a grant application, for example, what does the budget look like? Where is it? How are you going to compensate them? What rate are you going to use? What are you going to offer? I asked that question, and if anybody asked me to do something, I now say, “Are you offering compensation?” I've just been asked to be on a panel in October, and I've already said - it’s a not-for-profit - as long as you pay my expenses, I will do it, because [not-for-profit]’s a different category for me.
So I think that having that- so when I saw the findings of Grace's research, it really resonated to me about those barriers.
It makes it very difficult for us to ask the question, because if the person doesn't offer it, then you're kind of wondering, will they? Or will they not? And if you're a person who assumes you're going to get compensated, and you don't, that's a really bad situation, a person who assumes you're going to get compensated and you don't, that’s a really- that puts you in a bad situation, too. Or I’ve been in situations where people have been sent compensation, without them accepting it, and the cheque arrives, and their taxes are compromised for that year, so it can work like, in a goodwill gesture, turn against the person.
So I was very interested in her institutional take on it and the barriers, and I know from myself, researchers that I've worked with, have spent hours and hours working with finance departments trying to straighten these things out - like an incredible amount of time persevering trying to do the right thing for their patient partners, and running into all kinds of barriers, and not understanding - from those people, in those jobs, what patient partners, what that is, that we're not contractors. We're not university contractors, and that's been a really really big challenge.
So when Grace would show the findings, I would think, “Yep. Lived through that. Yeah. Went through that. Yes, did that.”
I’ve always had some compassion for the researchers who are trying to pay people and do it fairly, and just hitting their head against a brick wall, and somehow that has to change, too.
I'll give you a good example of that, by participating in something just very recently, and it was a bad experience with the compensation process, and I was told that they had a workshop, with their finance department, a half day, and had brought all of the issues, and were working on resolving them point by point by point. And I thought, “Wow, that's really good, because I come and I get, I was very honest: “This is what happens.”. So, I think that, with researchers also, weighing in on this as important as it is for us as patient partners to have our perspective and try to improve it, it's also important for the researchers Grace to be working on it from their end, too, because I can't walk into the finance department and make changes, but the researchers can put some pressure to get to make to get those changes made.
Bryn
Certainly, it sounds like you've certainly had the gamut of experiences, unfortunately, over your work as a partner. I wonder- one of the things you said that made me stop and think- what would you have as tips, perhaps? Where it sounds like some of your comments led to a workshop which, hopefully, is going to be productive for that group, and hopefully does lead to meaningful changes. What would you do?
You have maybe particular tips for researchers on what they could be doing ahead of time, so you don't necessarily have to be the one to start that conversation?
Maureen
Yeah, I guess my top tip is offer it. So don't make the person ask for it. That would be number one. Be very clear, and when you do offer it, be very clear about how you're, they're going to be paid. Will it generate a T4A or not, because that generating a T4A can have a very big impact on people.
And never assume that people want to accept it. Some people don't want to take it, and that's fine, too. So offering is a really nice way of doing it: “We're offering whatever amount for this”, and let people agree to that, or have a conversation with you, if they think that's not a fair amount, and if you are basing it on a policy or a guidance document, say, “This is based on the SPOR Evidence Alliance Compensation Policy”, or, “This is based on Diabetes Action Canada”, whatever source you're using to come up with that amount. Just be frank about it, and just be frank about it and explain what it is you can do. That's my big thing, and clarity.
And one other last one: Don't think that paying expenses is compensation!
Some people consider compensation, “We'll pay for your taxi to get to the sites.”.
That's a completely different discussion, to get to the site. So that's a completely different discussion.
But really, my top tip is, don't make people ask for it, and then don't create a process where you need a PhD in math to figure out how we get the money.
Bryn
Well, I was gonna say- absolutely, I was about to say there, that I know if my employment offered to pay me by paying for the cab to get to my meeting, and that was what I was getting, I probably take a little issue with that! I think when we start framing it that way, that's when it hits home.
Those are wonderful points. Thank you, Maureen.
Grace, to play off what Maureen was just saying, speaking to those 65 documents that you unearthed during your work, did any of them say anything like what Maureen just said? Or are they all saying that, and just nobody knows which one to use?
Grace
Yeah, I mean, there are some recommendations within the documents; we extracted quite a comprehensive list. Some were contradictory to each other. Some recommendations recommended using a fair market value calculator, while other documents advised against it for different reasons
But just echoing what Maureen said, reimbursement is the bare minimum here. I don't believe patient partners should ever be paying out of pocket to be involved in research.
I think one of our first conversations that I had with Maureen, I asked her what was the best experience you've ever had with compensation, what's the worst experience you've ever had with compensation, and I tried to take recommendations from the best experience and use that to move forward and spread that word to other researchers in my institution who are looking to offer compensation.
Some of the key recommendations that I came across - and this is a mixture of Maureen’s advice, and as well as what came through from the scoping review - it’s just: being transparent upfront, think about compensation as early as possible, budgets, have a time commitment in mind for each patient partner; I think that's important in itself.
But then, that can also help you gauge compensation, being transparent about it, upfront, whether the project's funded or it's not, explaining that right off the bat.
A lot of the advertisements that we circulate in our institution to find patient partners, we have time, commitment, and compensation on that advertisement, because that may impact who's able to to join the research project. Once patient partners are okay with the time commitment, I like to have one-on-one conversations with each one to discuss, “This is what we're able to offer financial and non-financial compensation.”
For example, co-authorship on publications, we like to say that up front that that's available - if people partners are willing to accept that; again, just like financial compensation, non-financial compensation can be refused as well.
So just being upfront with what you're able to offer, the amounts that you're willing to offer - just as Maureen said, justify the rate. If you have a guidance document, I always share it with any patient partners that I work with, just in case they're interested in reading more about why we chose this value. Then, asking each individual person how they want to be compensated, because it's so individualized, or it should be unique to to the person essentially, and the only way you're gonna find that out is by saying, “Hey, this is what we can offer. How would you like to accept it, if you would like to accept it?”
Those are are my big key recommendations, and I always like to be upfront about the financial implications of financial compensation; the effects that it may have on income tax rates, or patient partner's ability to accept income in another way.
Just being very clear that, even within our institution, if we're offering an honoraria of a hundred dollars, we collect some numbers, and some people aren't comfortable with that - and that's totally okay. We can come up with a different way to compensate you.
Just being very upfront about all of those those details. And I think it's really on the researchers, it's on them to start this conversation.
Those are just a few key tips that I have.
Anna
Thank you. Those were really practical takeaways from both of you.
Something that also really struck me as an issue that I see coming up more and more, especially among people who are new to patient engagement and research, and they're seeing [grant funding] calls out there that are increasingly asking for patient engagement, but perhaps they're smaller research groups, so they don't have any form of funding. And then I see that hesitance where they just don't know what to do, because they say, “Well, I want to engage patients, but I have no budget. I don't really have a slush fund”, so something that I've recommended to these individuals is, like you both said, be very upfront about this. But then, also tell the patient partners that you are committed to working with them, to develop the budget, so that when the study, if it is successfully funded and goes forward, there will be fair compensation.
I know that's something that I've come up with through my experiences, but I'm wondering what you both think about that, and what you say to these groups that say, “You know, I want to, but I don't know, should I just not engage patients then?”
Grace
Yeah, one of the interesting things that I noticed was a lot of frameworks for patient engagement and research recommend engaging patients as early as possible in the project, and that makes sense because you want their perspective at the research question development stage when you're deciding what to propose for funding, so that some of the details can be influenced by patient partners before they’re somewhat fixed by a successful application.
This is something that we've grappled with, and we've had meetings with CIHR, and we've brought this up that we need more planning and dissemination grants, and we need more catalyst grants, to create these relationships and create these proposals. And we need funds to do that with patient partners.
In the example, Anna, that you just mentioned, I think that's a great way to approach it. I mean, not all projects are funded, and being transparent about that at the beginning - “We don't have funding right now, but if we get this grant, we are committed to offering you compensation for your involvement in the funding application, development, phase, as well as being engaged throughout the project” - and if that doesn't work for some patient partners, that doesn't work, but just being transparent about there's no funding right now, but we are committed to compensating you for this work once we're successful, and we want to maintain engagement throughout this project.
Maureen
I appreciate the efforts that you're making to do that, because I've been - I've devoted hours and hours to grant applications that didn't get funded and didn't receive anything at all. I think it's become quite popular now that, when they do get the funding, they do go back, and they will try to compensate you for the work that you did work on.
I think that if CIHR was really serious about Strategy for Patient-Oriented Research, they could create a fund where researchers could apply and say, “I didn't get funded, but-” - it wouldn't have to be a big amount of money, they could put a maximum amount of hours, maybe 5-10 hours - and say, “I would apply for some funding for my patient partners who participated in doing this”, because just filling out even the applicant profile, common CV, and all of those processes, just that is your 5-10 hours might be just there!
So, I think that, if they really were serious about it, and- [the patient partners] are going to get nothing, right? Not only did the project that maybe they have their hearts set on didn't get funded, but they're also not going to get anything for participating. I don't think it would cost billions of dollars to do that, and it would be a move to show that we value patient engagement at the idea stage. I think that that idea is so incredibly important, and I feel that sometimes researchers don't do as much engagement there, because they do feel that, “Well, I can't offer anything at this point, and I'm asking them to do all this work…”, yet it's one of the most important parts, is to get that question right, to get the outcomes right.
I think that we've shown that patient engagement early on leads to better research. So I think there's certain commitments that could be made to bolster it and not put it all on the researchers.
What we have to remember is that everyone starts somewhere, and some researchers, it's the first time that they're doing it. So a couple of months ago, I was told by a research assistant - when I asked about the compensation, which I knew was there because I had been been part of developing the grant application - “Oh, we can't pay you. We're not allowed to pay partners.”
And I said, “Oh, okay. So you have a department at your university who you should call; call Grace Fox.” I have a conversation with them, because so many- it’s not malicious, it’s just not knowing. And wait. These teams are engaging for the first time. I'm always so happy to see them joining, and I'm always very kind and patient, and say, “Well, actually, if you don't do it, get your hands slapped, and it's in your it's actually in your grant application, and yes, you can”, and so it's just a matter of not knowing.
There should also be, when people do take the courses that research assistants take, and things like that, for grant applications, there should be a section on compensation where they get more training on that, so that they don't say something like that. Maybe say it to the wrong person and not get such a polite answer, or maybe the person just believes it?
So I think that part of the institutional piece is institutions devoting time and resources to helping out their own researchers get this done and not just leaving it to them [to] just swim, figure it out for yourself, and I think that that's really important, too. Because it's not that they don't want to do it, it's just that they don't know, like they honestly don't know. And I don't want that to be a barrier to people coming into patient engagement.
Bryn
What you're starting with, both you touch on, in terms of the institutional piece, I was wondering- you don't have to name name names per se, but institutions that are doing it well, that are doing it right…
What is it they're doing from the institutional level that you're seeing that could be copied, that we could start sharing with other institutions in our own work, being that ambassador, and say, “Hey, I see that this place is doing this, maybe we should be doing copying these things as well?” Any things that you've seen that you could share with us?
Grace
I mean I can. I'm sure Maureen can speak to several institutions. I can speak to the one that I'm at, the Ottawa Hospital Research Institute. It's relatively easy for me to go about offering compensation.
One thing I will note is that within the scope of the documents that we found in the scoping reviews, about guidance for how to recognize patient partners for their contributions, none of the guidance alluded to how to implement within an institution. So you can have all this guidance, but if your institution has barriers set up, it becomes very challenging to be able to overcome those barriers within your own institution, and I have noticed that, whenever I offer honoraria to patient partners, I can share an intake form that puts them right into the system, they can fill it out with their name, address, SIN number: all of the details that we need to generate a cheque. We can deposit into their accounts, if that's how they would prefer to receive the honoraria, or cheque in the mail is another another way.
So that's relatively easy. They can fill that in themselves.
Once they're in the system, I can easily move any sort of funds to them, and we also have a cost code for patient partners, which seems like such a small thing. But I guarantee there's some institutions that don't have a code for patient partner, compensation or reimbursement, and something as small as assigning this code can make it a lot easier for researchers to properly compensate patient partners.
Is that something you got them to do? So I figure it. How do we get? Why, we make everybody do this, though.
Grace
No, I think they have that. One thing. One thing I am hoping that they can do is come up with some sort of a contract. That's more geared towards patient partner, researcher relationships, because we don't have that. And I had issues with that several years ago, and I don't think it's resolved to this date? So that's something that we could work on. But yeah, I mean, I'm not complaining - I think we do a great job there, and it's very easy for researchers to offer compensation, which is ideal and good to work with, honestly.
Maureen
Can I briefly gave my two cents on it?
I think institutions who do it right are institutions who recognize that it's not going away. Patient compensation is not going away, and that the system that they have for paying contractors, or people who do work for the university, doesn't work for patient partners, and that they have to make some changes, and it may take time, but they have to work with that, and I think part of that is through training and through understanding.
And that when they recognized that it's a work in progress, and that they're making changes, because sometimes I just see an unwillingness like, “This is the way it is and this is the way that we do it”, case closed, and it just doesn't work.
So I think it's a matter of saying, “Well, now, in the world of research, we have these other people who have come into our world, and they're different than all of the other people with whom our department deals with, and we're going to work with our researchers and with our patient partners to understand what their needs are, and to come up with a system that's actually going to work for them.” I think that is what needs to happen and some institutions are working on it, and others, I don't think- it's just, “No.” I really feel sorry for the researchers who are banging their heads against those walls. It's not just in Canada, so I can tell you. I do a lot of international work; the issues are all over the place.
And it's really- it's almost like, “It's not going to go away.” I want to say, “Wake up, it's not going away, patient partners aren't leaving.” We're in the system now, and your system has to acknowledge that.
I think that, with the research that Grace is doing, and with patient partners being more and more vocal about it, the message is going to come out. But it takes time, and it takes willingness, and it takes some champions up at the high levels of the university, too; change needs to occur from the top. People at the top need to say, “Okay, I'm going to make it my mission to also champion this, and I’m going to help out with this”, so that it's not the same researcher calling and complaining every couple of months. “Oh my! What a pain in a neck! I wish he'd I wish he'd work with mice!”
I think it’s a revolution of working with that, that full compensation has to occur, and patient partners aren't going to be quiet on it anymore.
All it does is it puts researchers in a very difficult position of getting these nice trusting relationships with the people who they want to work with, because they're constantly spending their hours of their days fighting a system that's unwilling to change.
But, that being said, as Grace explained, there are some really big changes happening, but it's got to be a little bit more more widespread.
And CIHR needs to take some leadership in that area, too. There's a lot of things that, at the pan-Canadian level could occur, that I just don't see any interest in [from CIHR] doing. It's like, “Everybody, go to your corner and do your own thing.” Wow! That's a lot of duplication of effort to- and for someone like me, who works in different provinces with different research in different institutions. You can't even begin to understand how how each one works. It's very, very complex.
Bryn
It's 65 documents worth of duplication!
Maureen
There you go, Bryn!
Bryn
By the sounds of it. Oh, my goodness! Well, you know what, I think if we have folks like Grace, who are gonna lead the way and make this systematic changes in the system, and folks like Maureen, who are so generous with their comments, and start and keeping that conversation going, I think, maybe we can start seeing the systemic changes on the pan-Canadian level at the institutional level.
So thank you so much, both of you, for joining us tonight, and for sharing your expertise.
Resources
Recognizing patient partner contributions to health research: a mixed methods research protocol (Fox et al., 2022)
SPOR Evidence Alliance Patient Partner Appreciation Policy and Procedure (2019)
Find Grace on Twitter: @GraceMareeFox
Let's help make patient engagement in research the standard or As PER Usual.