The Work Has to be Relational: Fostering Engagement-Supportive Academic Environments
Episode 7, featuring Isabel Jordan and Dr. Christine Chambers
Meet Our Guests
Isabel Jordan draws expertise from her experience navigating systems as a disabled parent of two disabled young adults. Isabel both partners in research projects and helps researchers and organizations to partner with patients in a safe, relational way.
Dr. Christine Chambers is an international leader in children’s pain research and a national voice for children’s health. Named one of Canada’s Top 100 Most Powerful Women, she creates connections and partners with patients to advance research, mobilize knowledge and improve the lives of children, youth and families. She is a Professor and Tier 1 Canada Research Chair in Children’s Pain at Dalhousie University, a faculty member in the Centre for Pediatric Pain Research at IWK Health Centre, and Scientific Director of Solutions for Kids in Pain and the CIHR Institute of Human Development, Child and Youth Health.
Contact the hosts: Anna and Bryn
Resources
Jordan Z et al. (2020) Is sharing really caring? Viewpoints on shared decision‐making in paediatrics.
Richards DP et al. (2018). Patient partner compensation in research and health care: the patient perspective on why and how.
Richards DP et al. (2020). Patients as partners in research: how to talk about compensation with patient partners.
Solutions for Kids in Pain (SKIP) Patient Partnership page
Lancet Commission on Children’s Pain - A consensus meeting on best practices for patient partnership in pain research (Coming Soon!)
Bryn Robinson
In our study, we heard from participants that traditional academic culture is not designed to support patient engagement, let alone effective patient engagement.
This is especially true for those academic researchers who are early in their career and do not have tenure.
So how do we make progress in patient engagement when we're swimming against such a massive current?
Anna Chudyk
Well, that's a big question, Bryn. According to our study findings, it's all about achieving change in the values and structures that underlie academic culture. Specifically, we need to evolve to a state in which academic culture respects and values the contributions and experiences of every research partner, including those with lived and living experience. It also includes changes in academic career metrics (which basically means how researchers are evaluated) to better support and acknowledge the time needed to meaningfully engage patient partners. It also means recognizing that there is a wonderful world beyond manuscript publications that includes alternate knowledge translation products that are often times of greater interest to patient partners and more accessible to the public. Finally, there's also a need for policies that support and encourage the active participation of patient partners in graduate student committees, tenure and promotion reviews, capacity building, knowledge mobilization, and peer review processes — basically, the entire academic enterprise — so as to help facilitate and maintain the shift in values and metrics of academic culture.
All right, so clearly a lot of changes need to occur in terms of personal and collective values and the academic structures in which we function.
So we're very lucky to have with us today Dr. Christine Chambers, an internationally recognized patient-oriented pain researcher as well as Isabel Jordan, an individual with a wealth of experience personally partnering in research projects and helping researchers and organizations to partner with patients in a safe relational way.
Welcome. Thanks so much for joining us today! We are so excited for this! Could you please start us off by introducing yourselves some more to the listeners?
Isabel Jordan
Why don't you take that one first, Christine?
Christine Chambers
I'm Christine Chambers. I'm a psychologist and a professor at Dalhousie University. I hold a Canada Research Chair in children's pain, and I'm someone who has, I guess, taken on a focus in patient-oriented research more over the last decade of my career. For many years, I was a more traditional researcher, and then had an evolution into patient-oriented research. So, really happy to be here and have a chance to talk about this important topic today. Isabel, over to you!
Isabel
I'm Isabel Jordan and I'm a person, as you said, with a lot of experiences and expertise from the point of view of a parent and as a patient. I'm disabled, both of my 2 young adult children are disabled and have chronic pain, and one of them is very medically complex.
My whole life, but especially the past 20 years or so, have been very focused on the health care system and research, because of the rarity of my oldest’s condition. I had the opportunity to take that into partnering for research in areas that were relevant to us. Some experiences were great, and some experiences really were not, depending on … actually, earlier on, mostly they weren't.
I've been doing this kind of stuff for about 15 years, and then more recently, I've taken that experience, and working with other patient partners, to help researchers and organizations know how to do the work better. Like, what are the concrete steps to take? And not just from my point of view, but from the point of view of including other patient partners in that.
Anna
Thanks so much for that introduction. So why don't we launch into our first question, tell me Isabel and/or Christine,
Why do you think it's important that people are starting to engage in dialogue about how current academic culture needs to shift to better support meaningful patient engagement?
Isabel
So that is a huge question that I will try to give a not-so-huge answer to.
I think a good way to center it is around where we are in patient partnership in terms of what's been happening — what we know might be best practice given what we know now and whether people can actually move towards best practice.
And if you look how patient partnership has traditionally been done and often still is done is that the folks working that have lived expertise in these areas often look like me. They're middle-aged. They're women. They're white. And not to say that we don't have things to add, but we generally don't represent the folks that might have more barriers to participating, more barriers to healthcare, more barriers to research, and there's a recognition that we need to do better on that and lots of conversation around it. But I think those conversations are only just beginning to spill out into how we do things.
And I really firmly believe that at this point versus 15 years ago when I started doing this kind of stuff, we know that doing this work with an EDI lens, safety, trauma-informed, is what's going to get us the best kind of information or partnership into research projects. So, we need to do it that way or learn how to do it that way. Otherwise, the outputs aren't as good.
Christine
Yeah. It's a great point, Isabel. And I think, you know, for me, I think it's really timely that you're having this conversation around how do we address these systems-issues that are kind of baked into academia, right?
We've made a lot of progress over the last decade and really raised awareness about the value and importance of patient-oriented research, and I think Isabel's just been a tremendous leader in the how, right?
It's one thing to say it and to want to do it, but the actual, “how do you do it” and the specificity of some of the issues that you get into around compensation and attribution of authorship, like there's been incredible progress there, but for the most part academia has remained with its current metrics as you mentioned before. There's still a big emphasis in the promotion and tenure process that faculty members have to do for their CVs, for their resumes, and for their annual reports to the department on the number of publications that you have, the number of presentations that you've given, how many times your papers have been cited, what your H-index is, what the impact factors of the journals are that you publish. There is a whole movement more broadly, internationally, to get away from those types of traditional metrics. There's the Declaration on Research Assessment (DORA) that's really trying to pull people away and to encourage people evaluating academics and the currency in academia to shift, but it hasn't moved that far.
I mean, it's great that we're talking about it, but when I have to fill out my reports, that's the kind of stuff that I have to report on. I would say that there is in general a lack of appreciation and understanding for how much work and how much time and how many resources it takes to do this well. That kind of recognition and that kind of acknowledgement, it's the right thing to do.
I think people who end up getting into this work — it's hard, but it's incredibly intrinsically rewarding because you realize that this is the way that you could have impact.
If you are motivated to truly make a difference in the world — like in my case, truly make a difference for children in pain — publishing in journals is one thing, but actually working in partnership with others (including patients) is so important. So, I think we've made a lot of progress, but I think there's still a lot of institutional and systemic barriers in academia.
Bryn
Yes. Absolutely. And it's great that you brought up DORA. That was something on the tip of my tongue as you both were speaking to some of the slow, but positive indications that we're seeing moving forward. I am curious myself to see how that's going to be integrated into actual tenure applications or reviews of research work from an academic lens, and how is this going to be built in and actually start to mean something and have more weight. To give credit to what you were saying Christine, it does take time. Very valuable, worthwhile time, but it takes time and at this point, we’re not seeing that output on the other side. Maybe we're not seeing the right indications.
What does a patient engagement-positive academic environment look like in your eyes?
Isabel
I think that's a really interesting question because patient positive environment for whom? I think we need to look at the environment. It has to be appropriate for the patient partners and also for the researchers and the trainees in terms of how we can all work together in a good way.
There's not different answers for each one, but different ways of looking at it from the different points of view. All those groups need to have their needs addressed in order to work well together. And I don't think that's generally happening. There also has to be institutional support for that, which is I can get into later.
What do you think, Christine?
Christine
I think you're absolutely right. Positive for who? Who are we talking about here?
I think broadly the words that popped into my mind when I think about what a patient engagement positive environment would be in academia, is one in which it's understood, valued, and supported. Those are the 3 words that jumped out for me.
I would say in the ecosystems that I can have control over and I think about Isabel's role in my research lab … Isabel and I collaborate in a lot of different ways and on a lot of different projects, but she's a part-time strategic lead for patient engagement within my research lab. For many years I didn't have somebody in this position. Isabel has been in the role for a couple of years now and what I think really makes it patient engagement positive for the trainees in my lab is that Isabel is integrated. Isabel is on the Teams chats, and she's at the lab meetings, and so her questions that come from a patient partner lens are integrated and embedded into the environment that the trainees are having. They are comfortable going to her with questions because they know they know her. She's part of the team.
So I think that the integrated component, especially for trainees — influencing the system as early as we can through giving trainees experiences that are positive around patient engagement is really important.
Isabel
One thing as Christine knows that I've been thinking and talking a lot about lately is language and what creates a place where the patient partner in the team, on a research project, is actually valued. I think shifting language could help people understand.
One of the things that really sticks out to me is that we talk about “patient experience” and we talk about “researcher expertise” or “clinician expertise.” Language like that I think automatically devalues us as patient partners.
There's this shift that has to happen (and not everybody is going to be capable of it) so that when we as patient partners are brought into a team, it's understood that we have expertise that comes from experience. Other team members have expertise that comes from a variety of academic backgrounds. But it's all expertise.
It's not an opinion or a viewpoint. If we're really partnering with patients, then we value that expertise, and everything falls from there.
We have to implement changes to make that happen so that people can actually provide their expertise. And how do we all work together towards that?
Anna
That's a very interesting point and builds off of something that I've been thinking about as well. We need to start to consider patient partners as part of the interdisciplinary research team.
Isabel
Exactly.
Anna
It's not just saying, “I gathered an interdisciplinary research team and I have some patient partners.” I think once we start thinking about that as well, the natural next step is to think that these patient partners bring their lived expertise such as other people bring expertise of stats or intervention design. So I totally agree with you on that one.
Maybe we could build off that point to thinking about different types of supports. I know that both of you have also mentioned or touched upon institutional supports.
What personal or institutional supports do you think are necessary in order to really start shifting the academic climate?
So, looking first within research teams and what individuals could do and then moving outwards towards the system.
Isabel
You want to take that first Christine? I got a whole bunch on that.
Christine
Yeah, okay, I'll jump in and then throw it to you. So in terms of supports and the sort of circles of the system that we're in, I think you have to have the funding to be able to engage and compensate people properly for their time. Funding is always tough.
You have to have the training on how to do this properly.
From a broader systems level, again, people have to appreciate that this is important. One of the things that I've seen at a university, which I was really grateful for, was that they created impact awards for their faculty. These awards were specifically developed to not just reward publication output, but to actually show that what you were doing is having some sort of real-world impact on practice or policy. I think those types of things send a very strong message that your institution supports and values the kind of work that you're doing.
I often say that patient engagement, patient partnership, doesn't really align with all the metrics that we have in our world. If you can't measure it, you can't count it as impact. Working in partnership with patients is something you feel. For example, you know that your work's having an impact when people approach you on the street and say, “Hey, I use this with my kids during needles and it made a huge difference.” You can feel it and you know that you can't really measure it the same way.
I think awards are opportunities to acknowledge people and provide supports for impact. It really does make a difference. You have to acknowledge it within the system.
Isabel
Everyone that knows me knows that at some point I'm going to talk about compensation. Because it is so key and so important.
But I think the important thing in this context to talk about is that most academic institutions, I'm going to say all, don't recognize that patient partners are in our own category. Some rules have to be different for us in terms of compensation and how you compensate people. Those financial policies haven't caught up to what we know as best practice in terms of compensating people in different ways. For example, if they can't accept cash, maybe they could have a course. We need to find these alternatives that work for people.
In every patient partnership finance form I've ever filled out with a variety of different universities, they're all vendor services forms. We are not that. On the one hand, we are legitimate research partners. But on the other hand, there's not an understanding that we are legitimate research partners that have barriers to our participation. Especially those who haven't been doing it as often or who come from otherwise equity-seeking communities.
It makes it difficult for the researchers as well, and for the labs, to be able to put in best practices when the institutions don't know that they have to update some of those policies — not just around compensation but around other things. To really have an understanding that this is key for research, we have to include it, so it has to be supported.
I don't think we're there yet. I see this too in terms of some of the work that I do on anti-abilism in the academic world. It very much goes along the same thing in terms of that kind of institutional support and understanding that not everybody goes under the same umbrella and that's okay — you have to make allowances or make different kinds of practices for that.
The one other thing that I would say is it's great to give awards to folks. Hooray! But funding people appropriately for patient partnership doesn't happen.
So first of all, not enough funds are in it. There should be a dedicated [line]… for a patient partner over and above the cost of what it takes to do this research. There need to be [budgeted] costs for doing a well-resourced patient partnership. And then when people, when CIHR, are reviewing and they want patient partnership to be part of that review, they don't have enough content area experts to contribute to that review. And by that I mean patient partners that understand patient partnership. Not that it can't be taught. Not that it can't be a module that you go through. But we really need people that understand partnership and understand equity to know whether a project has what it needs to include patient partners.
Christine
Can I jump back in here? You know, Isabel and I, we could have this conversation with ourselves, I think, and it's been great because we haven't had these conversations in a while as well. We're so busy doing we don't get to have the big picture conversation. This is fun for us.
I will say that I've come to really appreciate all that I call the hidden costs of doing patient partnership. It's not just the compensation of the patient partner. To give you an idea of an exciting poster that Isabel and my lab led last year about… I can’t remember the title… but in essence, it was navigating institutional barriers to implementing patient partner compensation. All of this amazing compensation work has been done, but then when it actually comes to navigating the systems, the forms that Isabel described, it was a whole project. When we have a challenge related to something to do with patient partnership, it could take a week of staff time to follow up with the organization, troubleshoot these things. I know why a lot of people give up because they don't have the kind of budget necessary to do all that administrative stuff.
I have a role at CIHR now and it's interesting now that I bring the funder lens to this as well as a researcher lens. Part of the problem is there's just not enough money to go around. But I think that we don't acknowledge all of the administrative costs as well that the researcher tends to carry rather than the institution. But you know, there's a lot of institutional inertia on these types of issues as well.
Isabel
Yeah, and not just resourcing, but resourcing and supporting the people doing the partnership in terms of the lab and supporting the patient partners. [It also means] creating an environment for partnership that lets you have that relational approach, which I think is so key. That can mean being able to give people a gift card to skip the dishes so that when you're having a group meeting you can eat together even if you’re virtual. Things like that that can help create that environment of welcome. But that all has costs in terms of time and in terms of money for things.
Bryn
Yes. If it’s hard, that doesn't mean it's not the right thing to do.
I was wondering when listening to you talk about some of the institutional barriers that you've been going through and these hidden administrative challenges that you’ve found. For either one of you, what’s worked in the past to help dismantle some of those barriers or get around some of these barriers? I'm always looking for practical, tips.
Isabel
Can I jump in, Christine? You know, I've had experience myself with 5 or 6 different universities in terms of being a patient partner with them and then also hearing from colleagues who are also patient partners. All too often there aren't the resources or the understanding within that research project for the principal applicant that certain things are barriers to patient partners. That methods of compensation and how you connect in meetings… that there's a slew of things that make best practices.
Often patient partners are kind of thrown to the wolves in terms of having to sort out invoicing or how often or how much we get paid or what's going on with the research project. I only get called in once in a while for meetings and I know there's other things happening.
And where I've seen it done well, and I've certainly seen it done well some places, it's not the institution making it easier. It's the principal investigator, the lab, the researcher taking it on themselves, which I don't think they should have to because they’re not funded for that (to get around the systems).
Christine, I think about the various compensation resources that we have in your lab and also at SKIP. I mean, it took a huge amount of time to create them and they're created so that patient partners know that they're welcome and don't have to do administrative work that might be difficult for them. I'm curious to hear if Christine has more [to say]. But every time I've seen it [done well], it's been on the back of somebody who really cares about this work and can find resources to do it or do it on their own time, which isn't right.
Christine
I would say that it does take a lot of work. And I think there's a lot of reinventing the wheel. Which is why last year I was like, you should all present this at a conference. Isabel is wonderful and so active on social media and contributes to articles and everything. But I think that a lot of this knowledge and experience sits within teams and is not shared across teams. I also think that is why your podcast is so great — you're trying to spread the word how you navigate [things like] this.
At SKIP, our compensation strategy is on our website so that anyone can access it. We're happy to share with anyone who reaches out, anyone who accesses our website, our navigational approach recognizing that every institution is different and there are different barriers in different places.
I think acknowledging that it is a lot of work, but people should reach out and share [their approaches]. I think another area in which Isabelle has done incredible work at SKIP is trying to improve the diversity of the types of patient partners that engage. It’s really hard to do and all of that sits with Isabel and core members of the SKIP team who work with her. Something we’re considering is how do we scale and spread some of these things? SKIP is entering a transition period. We're entering our final year of Networks of Centers of Excellence funding and we've been talking about our legacy in particular areas.
This patient partnership piece — I think we've learned a ton. We've made tons of mistakes. We tried lots of things that have worked and that haven't worked. But how do we share this? I mean that's one thing we're really good at in academia. We know how to share the results of research in that we know how to give talks, present posters, share papers. But this kind of knowledge? We don't share it the same way. We might talk about it. We might complain about it. But there aren't the same kind of dissemination mechanisms to share that kind of knowledge.
Isabel
Interesting too because I think of the work that I've done with CIHR and the Institute of Genetics. There's a role for funders to say, “these are the standards.” There's that tricky relationship between the funders and the academic institutions. But I think there's a way that they can learn from each other. To move this forward from an institutional point of view. It's just really necessary.
What you were saying, Christina, about working with an EDI lens — you know, I'm a middle-aged white lady. I am disabled. So, yeah, equity points I guess. But the work is hard. The better you do it, the harder the work. And the more resourced it is. And it's so tricky because I mean honestly, in my opinion, I think that if you're not doing patient partnership with an EDI lens and really looking at the populations you're talking about in your research and how that's reflected in your patient partners, you're not doing good patient partnership. But to really effectively work with folks who are equity-denied requires more work and setup — creating safety, reaching out. To people that haven't been reached out to before, creating relationships of trust so that they feel, they know — I hate the word feel in this work — by the way that they know that they're being valued, integrated, respected in the work.
Hello, and I work with a psychologist. I'm like, no feeling words.
Bryn
You work with psychologists? There's one over here running this podcast. You're just surrounded by them.
Isabel
Okay.
Anna
So I have a follow-up question, but before I do, could we take a little sidestep for those of our listeners who don't actually visit our substack? Could you briefly explain to them what SKIP is in case they don’t want to Google or visit the resources section of our website to find the answer?
Christine
Sure, so SKIP stands for Solutions for Kids In Pain. It is a national knowledge mobilization network that links partners, patients, researchers, and a variety of organizations together to help collaborate in coordinate to improve children's pain management.
We've been funded by the Networks of Centers of Excellence for the last 5 years and will be transitioning into a new entity as an official Housing Research Center in April. SKIP grew from a grassroots project that I was funded to lead from CIHR where Isabel and I got to know each other.
Actually, Isabel and I met over Twitter. I'm on the East Coast. She's on the West Coast. We collided on Twitter and she started asking me really good questions in the very kind but assertive way she is so good at. I started learning a lot from her so she joined a parent panel for a project I was running called, “It doesn't have to hurt” in which we were using social media, digital media, and partners to reach parents with information about children's pain.
So yeah, SKIP is a patients included organization in that patients are actively integrated in all aspects of what we do. Isabel is a core part of our administrative team. We have a variety of patient partners on our board and then we also have a very active patient caregiver advisory committee and all of these levels of people are engaged in helping to mobilize research results.
So I don't know, Isabel, if you want to say anything about SKIP. That was my standard spiel. You may have more to add.
Isabel
It's a good standard spiel, but what I would say to the patient partners out there is that a lot of people, a lot of organizations say that.
But SKIP really walks the walk in terms of having patient partners (people with lived expertise) throughout the organization — from governance to advisory groups — and actually listens and understands that we have expertise that others don't and acts accordingly. That's hard to find.
Anna
And that's so inspiring to hear as well because like you said, Isabel, more and more people are engaging patients, but to see it done at such a systems level and so meaningfully is really inspiring. Hopefully people check SKIP out themselves so that they can model even some of the aspects that are present within their own research group.
I have a question that builds off of what you've been talking about and also something that I've been thinking about myself.
This past semester I co-developed a graduate-level course. One of the special things about it was that it was focused on approaches to patient engagement in research, which is awesome. Something we did was we actively included 6 patient partners in helping us co-develop the course, as well as help deliver it. The way that they did that was that students had their own sessions, every 3 sessions, where they'd meet with patient partners. They discussed the topic that the course was focused on at that time and then the patient partners also provided feedback on an engagement protocol that the students designed as well as their assignments.
Something that we heard from the students was how great it was not only to get to read about engagement, but actually see firsthand the benefits of engaging with patient partners. So it's that experiential learning. And then Isabel, now with what you've brought up, and you have as well Christine, about having you as the patient liaison Isabel with your lived expertise. I've been talking to people more and more about how they should have engagement liaisons. But through the conversation that we're having today, and other ones we've had on our podcasts as well, I'm starting to think that it needs to go one further.
It's not just about having a patient engagement liaison. It’s about having a patient partner, that is the liaison, that's well supported in their role. Like you said, Isabel — then students in the lab will get to engage with them, other researchers in that research team as well. Letting that position be truly a leadership position I think has a lot of benefits. So I was wondering what your reflections are on that? I know for me it's a big “aha!” But do you think it actually is an “aha?”
Isabel
I think it's a huge “aha!” This is no disrespect to folks who are doing that kind of job, that don't have lived expertise, that haven't been patient partners, that haven't been on that end of the power structure, haven't been harmed by it, haven't seen friends harmed by it. It makes it hard for them to really know what some of the pitfalls are or what some of the enablers are that kind of are not there.
One thing that I think about is that there are experts in patient partnership that do a great job. They have no lived experience. But there's a different value to having a patient partner who also has enough level of experience in partnership that they can provide that perspective and understanding and know how to bring in other people.
To me, it's like it's a completely different job, really. One that has such a huge value. Then there are also signals. I really believe a lot in language. And how it influences culture and culture influences language. I also believe that there are signals that folks who want to do this work well can give by how they do it to others. They get signal to others about respecting patient partner expertise on teams. Part of that is having a position like mine or I can think of Dawn Richards or Jillian Banfield at the Institute of Genetics. We all have this role that is implicitly saying patient partners have expertise.
Using the word expertise instead of experience signals that you're on an equal level.
I always say patient partnership, not patient engagement, because partnership implies being a team member. Engagement kind of implies doing a favor and it's not that. I think it's really important and I'm hoping there will be more roles like that.
Christine
I'm just going to jump in and say that as Isabel was talking, I was thinking a lot about how we use the language of incentives. But we haven't used the language of power and privilege within academia. So as Isabel was talking, I was also reflecting a lot on how academics are rewarded and build that power and privilege within their universities and also within their research areas.
[In engagement] you have to, and again this is not incentivized in any sort of tangible way, but you have to be willing to give up some of your space. This has to do with promoting equity and inclusion in other areas.
I think I’ve gotten to the point where when someone asks me to be on a podcast about patient engagement, I'm like well I could do that but I would want to do that in partnership with a patient partner. It's more work and it's harder and I think one of the hardest but the best talks that I ever gave was a part of a plenary that Isabel and I were asked to deliver together at a conference called Collaborating Across Borders. Isabel and I both had our own talks. And it's way easier just to give your own talk. Isabel and I didn't want to just do that. We didn't want to do, “I'll give my talk, you'll give your talk, we’ll conclude.” We decided to interweave our key messages together and it was very effective but it took a lot of work. A lot of academics don't want to share space. The way they're incentivized is to build their own program.
I think we need to talk about that as part of changing the incentives as well. It's not so much what you do (I mean, I've had an amazing career and I'm very grateful for it), but also what you give up or what you share to be able to create space for other voices and other conversations.
I think I've just been so lucky to get to know Isabel. We're very different in a lot of ways, but we also have a lot of very similar personality characteristics that allow us to feel comfortable with each other. Comfortable enough that Isabel will call me out or I'll tell her I'm struggling with something. lt's an honesty and a trust that has allowed us to grow our work in different ways and learn from each other.
Isabel
I think that says a lot, Christine, when you say it's an honesty and a trust because those are the 2 principles patient partnership has to be built on. To make it effective and to make it safe.
Something else that I thought of while you were talking about power imbalances. Two things.
One is that a lot of really wonderful people that are kind and nice have difficulty recognizing that they have power. That there's a differential and that's not helpful. It's really important to know when we have power in a relationship because it can't be equalized. It is what it is. But it can be recognized and you can work to overcome it or work together to build that trust. I think recognizing it is a huge part of building trust.
And I think something else that goes along with that — that some researchers don't recognize and some patient partners also don't recognize — is that it can be really hard if those power differentials aren't made explicit.
I know for me, and I'm not going to talk for anybody else but I'm sure for other people as well, a lot of my expertise comes from negative experiences in healthcare with clinicians who also represent health researchers. So we go into these spaces with a lot of trauma baggage around what you can say to the researchers and the PIs. You have a deep kind of fear about looking stupid because if you do that in front of a doctor that you're trying to get to do something to help you, then you don't get that help. That's something that I after all this time I still feel. I don't know what would make me stop feeling that because often disabled people keep experiencing harm in the healthcare system.
So I think it's really important to just really put all that stuff on the table.
Bryn
I really appreciate you both jumping from the word incentive to power imbalance. It's the power structure in the system that continues to perpetuate generationally, new research, and so it keeps getting. The same thing can happen over and over. But slowly we do have individuals who are able to trade that. I would like to see it more I guess.
As we looked to bringing things to a close for the episode, I was wondering. Normally we like to ask folks, can you name one practical thing moving forward that we can do with regards to the topic of discussion? That one thing we can start doing tomorrow to make a difference.
How can we change it for the next generation so that they don't feel like they have to play the game because they also want their degree? Maybe they'll think once they get old, then I'll do something different, but that’s hard to break.
Isabel
Let you take that one first, Christine.
Christine
I think for me, one of the most effective strategies is giving people that kind of experiential piece as early as possible in their career.
I think we still need to work to overthrow the larger power structures and promotion criteria and all that stuff. So don't get me wrong — we still need to tackle that and do in the ways that have influence — but the most effective way I think to have a path forward is exposing as many trainees to this as possible. Not just in the labs of people like me who really believe in this.
I'm part of a training program called the North American Pain School and we have 30 trainees from around the world. Basic science, clinical science, and we always have 2 patient partners at the event and it's the basic science trainees who are often the most blown away by the power of patient conversations.
At lunch, for example, I really feel like if we had to make one choice about where to invest a lot of effort and energy it would be in those conversations and those opportunities to really get to know each other and develop that partnered-oriented mindset as early as possible in people's careers.
Isabel
Absolutely that, Christine.
And you know, from a patient partner point of view, I think there's a huge role to play for people like me — people who hold privilege as patient partners to make room for others.
To step aside when there'd be somebody who'd be more appropriate for that opportunity. Even if we have the privilege to not partner with best practices because we can kind of cushion our own personal harm, to not do that. To make sure that we're holding folks to a way of doing this that includes — can't say all of us because it's way too optimistic for me — but includes more of us. I really do think there has to be some growth and recognition within the patient partner community about that as well.
Anna
Thank you both. This has been such an enlightening conversation. I wonder if before Bryn wraps up for us, Isabel if …. one of my favorite things that I say about patient engagement is that I don't have to have all of the answers. I don't even have to have many of the answers or ideas because it's truly collaborative if you do it properly.
So to your point about how academic researchers could help create a space where people feel more okay sharing and as though they're on an equal playing field — do you think an approach could be to be vulnerable?
As I get on with my career, I feel less and less like I have to look like I know all the answers. Like I have to look like I know everything that's going on. So to bring that vulnerability as well when you're asking people to share their lived expertise. If you never show any vulnerability, you never show any openness … It could be something as little as “Oh man. I had a bad day today” or “I feel very nervous for this meeting” or “I don't really know how to frame that research question.”
Do you think those are practical little things that people could also start to do to show that we're all human and we're here trying to frame and figure out a problem together? So none of us have all the answers we just hopefully all have good intentions?
Isabel
If you'll allow me, I'm going to reframe that just a little bit. First of all, yeah, absolutely agree with you. This work is relational. Has to be relational. I mean, life is like that.
I'm in projects completely not related to this kind of work. If I don't have relationships with the other people in the projects in terms of actually caring about them or what happens to them or knowing a little bit about them it's not very satisfying. As a patient partner going into something — if you know that the person in charge also has doubts, also wants to learn… for me the best learning is learning together in how to do the work. It can make a really big difference. And along with that, again, I'm going to talk about feelings.
When including patient partners when coming up with a patient partnership plan, when having meetings, I think it's really important for folks in charge to think, do I want this person to feel included? Or do I want them to be included? And what does that look like? Because that's, a tangible way:
When I am included, I feel included. People can make me feel included and then completely ignore me later after it's all done.
And it happens more often than I'd like. Not so much anymore, but I think it's really important to think about the fact that you don't want other research partners to feel included. You want them to be included.
I also often say that respect comes before empathy and that empathy requires that you can see things from somebody's point of view and we don't need that. I mean, it's nice when you know people well and you have that empathy. What we need first is respect for our knowledge. You don't have to see how we see things, but if you say, “I don't know this and you do” that shows respect and all those good feelings I think come from after that. It's an order of operations thing.
Bryn
I think that's a perfect place to wrap up. Across all the episodes we've had so far, it never fails to surprise me (and I like to think it's not the psychologist in me) but it does come back to relationships at the end of the day.