There's No Term Limit on a Community
Episode 8, featuring Alies Maybee
Meet Our Guest
Alies Maybee: As a patient partner since 2011, Alies collaborates in many aspects of healthcare with a special focus on patient engagement and strengthening the patient partner community. As such she helped co-found the Patient Advisors Network (PAN), a national community of patient and family advisors/partners.
Contact the hosts: Anna and Bryn
Resources
Patient Advisors Network (PAN): www.patientadvisors.ca
Bryn Robinson
In our study, participants stated that there's a lack of community of practices and professional networks that foster a culture of engagement within and among the patient engagement community. This has a negative impact on patient partner recruitment and retention, diversity, inclusion, and overall uptake of patient engagement in research. They also spoke about the lack of clarity about existing strategies for patient-oriented research networks and other infrastructure to support engagement. For example, what exists, how to access, roles, and responsibilities. All of these factors deter from full utilization of existing capacity to support patient engagement in research.
Anna Chudyk
Our study participants also had some great ideas about how to enhance the sense of community among patient partners and academic researchers.
First and foremost, it comes down to awareness again. That is, creating universal awareness about the different societies, communities of practice, leadership groups, and networks that exist within our engagement community. And then also ensuring that these different bodies are unified and interconnected so as to identify gaps in what's missing as well as to foster that larger-scale sense of connectedness. Beyond creating community, these different societies, communities of practice, networks, etc. could have other important roles as well, such as offering centralized, easily findable, and streamlined support, training, and networking opportunities for all research partners, and helping enhance patient partner recruitment and public awareness of patient engagement in research.
Study participants also identified a need for more networking and gathering opportunities such as an annual knowledge mobilization forum that is spearheaded by a national platform or established network (like the SPOR Summit for example, which some of our listeners may remember). They also highlighted the importance of other regularly occurring events like workshops or webinars that give people the opportunity to interact and learn with each other and form relationships. When designing these forums, it's important to ensure that patient partners are at the forefront, helping organize, conduct, and lead the activities so as to help continue to establish patient partners and academic researchers as equal partners in the research enterprise. We're all in this together after all.
Clearly, establishing a strong sense of community among all of us engagement folks has a lot of potential benefits. And so we're very lucky to have with us today Alies Maybee to discuss this topic in greater depth with us.
Thanks so much for joining us, Alies. Would you care to introduce yourself to the listeners?
Alies Maybee
I'd love to and thanks so much, Anna and Bryn for having me here to talk about this. One of my favorite topics is talking about patient engagement and community and relationships, and particularly the Patient Advisors Network or PAN.
So let me start by introducing myself as a person, if you will. There were a couple of things that drew me to becoming a patient partner in the first place. The first was contacts with the health system, which is very often a driver. The second was a fascination with systems and systems transformation, which I had a lot to do with in my work life.
I first came into contact with the health care system in my early twenties when I was nearly crushed in a near-fatal car accident that left me with some ongoing issues. Since then, I've been accident-prone, so I've experienced structural damage — I’ve got a metal elbow and a ton of metal in my left ankle as well, which I broke just before COVID. In all these cases, I was glued back together again, and I went to in some cases a little bit of rehab or whatever, but I wasn't really thoroughly connected to the primary care system. No one paid any attention to the long-term impacts, and there was certainly nothing to do with mental health and the mental health impacts of being as damaged as I was in the case of the car accident. So, I thought about how the system functions or doesn't as the case may be.
The other experience I had was as a caregiver for my mother. My mother was Dutch. She lived the last 45 years of her life in the Netherlands. When she was diagnosed with dementia, it fell to my sister and I living in Canada to take care of her over there. We had to learn the Dutch system and I was really interested in how well the Dutch system worked compared to some of the things I had seen here.
So then when I retired, such as it is, I wanted to do something meaningful with my life and the health system was something that was very important to me. So, I approached my local hospital and became one of the first of their two patient advisors as we were called in those days in 2011. And that's how I started my journey.
In terms of my work, I have a technology background and I've designed and implemented large-scale customer relationship management systems in Canada and the United States through the 1990s and early 2000s. I did this and went through huge system change and transformation in the sales and marketing area in particular with people who refuse to touch computers, people who lost their jobs, and the chaos that ensued, and the backlashes, and so on. But over 20 or 25 years, that changed. It's now done, and people are accepting of it and in fact, embrace it and it really changed their world dramatically.
Then you look at the health care system and it's behind the rest of society in terms of going digital.
I knew that was coming. I knew my background would be of value. So I decided to really get involved in the digital health space as well.
I'm going to briefly skip ahead to 2020 when I was privileged as a patient partner and a citizen to be a member of the 17-person expert advisory group for the Pan-Canadian Health Data Strategy. That was in 2020 and we released the final report over a year ago now. It became part of the policy drivers for the current collective agreements between the provinces and the Federal government which made recommendations on how to transform our health systems in particular around accessibility and the sharing of health data.
I put that in there because who knew when I started in 2011 that I would have that kind of an impact? And I believe that patient partners can have that kind of an impact and we need to help each other get there.
So that was what I wanted to say there. As a patient partner, I've been involved in pretty much every aspect of healthcare, research projects, policy, service delivery, and so on, but with a focus of digital health and patient engagement particularly. Because we're talking about research, I will cover off some of my involvement in the research world.
In my very early years, I met a few other patient and family advisors sort of ad hoc and one of them recommended me to be the patient advisor on the Research Management Committee of what was renamed the Canadian Frailty Network. I did that for 5 years. I helped set research priorities, design research calls, establish evaluation criteria, and I evaluated literally hundreds of grant applications. That was my introduction to the research project if you will and my window into the research system.
Following that, I became a patient partner on over 10 different research projects and I continue doing that today on a wide range of topics. I also was trained on the Strategy for Patient-Oriented Research (SPOR) curricula so I could deliver training. I delivered about 3 or 4 different types of curricula on that, including some of my own. I have also worked very closely for a number of years with the Ontario SPOR Support Unit. I'm currently still working (since 2019) on the institute advisory board for the Institute of Health Services and Policy Research. And the thing that I find interesting there is there's an opportunity to see how we can make research more timely and more effective. Finally, along the way, I helped to co-found PAN, which launched in 2017 essentially as a community of patient partners in Canada. So that's about me.
Bryn
That's wonderful! Speaking of PAN, you probably have great experiences in developing a culture of community.
Can you highlight some of the lessons learned or pieces of the positive culture that you've brought into when forming that organization?
Alies
Well, perhaps the best way I can do that is to tell you a bit about the journey of what created PAN in the first place. There were 4 of us in late 2015 and early 2016 who got together to talk. We were patient advisors and got together regularly for coffee and thought, “Gee this is so great! We're learning so much from each other and we're so supportive of each other. We wonder if there's anything like that or if we can join up with others across Canada.”
What we realized actually is that patient and caregiver partners were really the antithesis of community. We were singletons mostly on our own. We didn't get much of a chance to get to know each other except by chance. Our primary relationships were with the organizations or groups that we became attached to.
Most of us were involved in more than one way — many of us were involved in research with our hospitals, etc. — and we looked at some of the patient groups that we were familiar with. There were various ones here and there and they were all dependent on the healthcare organization that stood them up and they were in service of the healthcare organization's agenda. We thought, “Well, that's great, but it doesn't serve us as patient partners.” So we kept looking around for an existing organization and we didn't see anything that was the kind of thing we were looking for.
We did see a number of communities of practice for patient engagement. Some of us became involved with those (I certainly did) and what we discovered was that the focus of these patient engagement communities of practice was on the practice of engaging patients, not on the practice of partnering as a patient.
While there were some overlaps here and there, it was not serving our purpose either, although you certainly could glean things from these experiences.
We wanted something quite different that would be a kind of professional organization for patient partners I guess is the best way to put it.
We floated the idea of creating this ourselves. A couple of us were going to Vancouver for a conference in early 2016 (February). We got in touch through Twitter and by beating the jungle drums with other people who were going to be in the area at that time. We decided to get together and talk with them and say, “What do you think? Do you know of anything like this? Would you like to do something like this?” And that was the germ from which PAN sprouted.
There were 12 of us from across Canada. We met over a period of close to 9 months and we pulled together what we called the manifesto. The manifesto was really an encapsulation of who we are, our principles, our goals, our values, and how we want to go forward. From there we launched the website in early 2017 in English and shortly thereafter in French. We decided though that Canada is such a wonky country. If you want to be national, you have to start that way. I defy anybody to start something in Toronto and try and spread it nationally and be successful — it makes it very difficult so that's why we started the way we did. It was very deliberate.
Our objectives were to have a community where we could get to know each other, build relationships, learn from each other, and discover what makes us more effective as a patient partner. Our second objective was to have a locus for collective wisdom and we weren't quite sure in the early days what that meant or where that would go. It’s ended up though that it’s something that we're making more of these days, mostly through our consulting arm. PAN has both a community and a consulting arm.
Within the community arm, we have a private forum for discussion in a safe place. It isn't a safe place to talk about disagreeable patient engagement when the people who have placed you in that experience are also at the table. It's very hard to be frank and we wanted to be very clear that this was for patient partners so that we could discuss those things and learn how to handle things that aren’t working well. We also have an opportunity board — a job board kind of thing. We have tools and resources. We also have opportunities to partake in our 3 working groups which are really designed to help us build tools and resources for ourselves: one on compensation, one on digital health, and one on patient partner safety and ethics. The other thing we provide are webinars. We're just actually literally in the middle of piloting our very first course, which is designed by patient partners or patient partners called foundations of patient partnering.
Now let me touch on the consulting arm. We’re a social enterprise and people often say, well, how do you fund yourself? We fund ourselves by the work that we do as a consulting firm if you will. We have contracts with different health care organizations and groups. They pay us to help them in the area of patient engagement (usually). We collaborate with them and that's how we keep the doors open and the website up and so on and so forth. The consulting also helps us to develop our mandate. Specifically, we've completed a partnership on 3 different research-type projects.
The first one was when we were 6 months old of all things. The Change Foundation came to us and wanted to partner. We said, we're only 6 months old and they said, “Oh yes.” So we did. We worked with them on their research and examination of the market for caregivers. The result of all of that work that we did led to the development of the Ontario Caregiver Organization, which is a very robust organization that is in operation here in Ontario now.
We've also partnered with Audrey L’Esperance from the Centre of Excellence on Partnership with Patients and the Public to help develop the newly launched Learning Together Evaluation Framework for Patient Engagement in Research, which I think you're both familiar with because she was on your earlier podcast with the 2 PAN leads, Carolyn Canfield and Mary Anne Levasseur. That was a very exciting partnership!
The other partnership that we've just concluded is with Julia Abelson for the Canadian Patient Partner Survey work that she did. It was the first ever real attempt to look at who it is that does this work, where we are located, and so on. It was a very in-depth study and PAN had a great deal to do with that. It was also led by Carolyn and Mary Anne, but there was a PAN team behind their work.
The other partnership that we have, which is ongoing and current and has been in place for now 4 years, is with the Center for Digital Health Evaluation out of Women's College Hospital here in Toronto, Ontario. We have done now a total of 17 projects with them and we've got more in the hopper. What doing this work has allowed us to do is to develop a slightly different model for patient engagement that includes a mini community of all the patient partners who are on these different projects. We're at about 20 or thereabouts. We meet once a month and we share updates on the projects. That was where it started. But what's also come from this is a much deeper development of the relationships in the community. It's almost like a mini sub- if you will. People have learned about each other and we've developed relationships. We also have learned how to be more effective as patient partners and gained a great deal more confidence in the doing of it. We've learned subject matter expertise as well. So — it's both capacity building and community building. This was a really interesting element of the model, and we are now doing some work together with the Center for Digital Health Evaluation to talk about the model itself.
In sum - those are some of the things that we've done. We're now looking at 21 opportunities for partnership, most of which won't of course come to fruition, but we're hoping that they will.
There's one other partnership that we have that's very new. CIHR approached PAN and asked us specifically not for a patient partner but for a PAN representative on the steering committee for the Strategy for Patient-Oriented Research. We now have one person on that committee, but behind her sits a council that collaborates with her, feeds her information, is a backboard for her ideas, and so on. We’re looking forward to this relationship because it's an organization-to-organization relationship with CIHR. It gives us an opportunity also to see how to influence patient engagement going forward, not only through the SPOR community, but also through CIHR itself.
So that's it. Just to sum up what I think about PAN and PAN’s value — which I think is very far-reaching through the relationships, the networking, the peer-to-peer learning — we have a sense of community and belonging. I think that's one important value for those of us who do this work. The other is that through PAN we can share our collective insights and wisdom. We're still experimenting with ways we do that partly through our consulting but there will be other ways. The other thing is that in and of itself, its presence in the healthcare ecosystem really raises the profile of patient partnering in the ecosystem.
I will pause my comments about PAN here and I know I've taken a lot of time because we do want to talk about other things. But that's the story of PAN and where we are now. I expect it will evolve in new and wondrous ways going forward.
Anna
That's such an amazing story! To see the evolution of how it was a few people together and it's what we talk about — a few interested individuals inspired to make a difference and then you collectively grew. Something that stands out for me as well through the initial conversations we had here today about awareness is,
How did you raise awareness for PAN? Part of what I heard you say was that you established it as a national organization. But what we're hearing is that there isn't that much awareness about the different engagement groups that are out there and so people aren't accessing them. So how did you raise awareness so that you became this powerhouse group?
Alies
Oh my gosh, that is such a funny question for me because right from the start we had not enough money. We had almost no money in the beginning to do any marketing or outreach or anything like that, so we devoted ourselves to word of mouth. Pre-COVID, we would talk about PAN when we went to conferences and so on and we found that we got an uptick in membership after every healthcare conference that one or another of us from the starting group attended. And then it's like I told 2 people who told 2 people who told 2 people — it was entirely word of mouth and remains so to this day although we're now looking at doing something more in the way of outreach because we're moving into a newer phase in our life.
I think part of it too is that patient partners, patient advisors, have been thirsty for it. We have a website so a fair portion of the people who have come to us and become members have just stumbled onto us on the internet. So there's always that although there's no guarantees. I think there was such a need for community and that's what's supported us in this way.
Bryn
To follow up on that, I think it's recognized that there's often I would say a fake barrier from the researcher perspective, wherein they recognize the importance of patient partnership in research and the relationship but that it takes time they don't have. That always seems to come up. What would you say to that or how has PAN addressed some of those well-known challenges that are out there to continue to build community?
Alies
Well, I'll hearken back to the Center for Digital Health Evaluation and our sort of mini group. The group is persistent. People on the group who are patient partners may do a project and then it's done and then they're back in the group again and they may do another project and then it's done, but they're still always part of the group if they so choose to be and most of them do.
It's led me to think deeply about that because the health care system, the research project, and the research are all about projects and these are time-bound. When you have something that's time-bound, it's very difficult to create, maintain, and sustain relationships because you do your thing and you're out and you're done and that's it.
I guess early on in my career as a patient partner, if you will, I remember going to a meeting one time. During the break there were 2 women who were crying and I said, “Why are you crying?” And they said, “We've been 3 years on the Advisory Committee and now our term is up and we're done and we're losing everything — all these people that we got to know. What do we do?” That got me thinking about this business of when you have accounts and you have terms and you're only there for a period of time.
When you have a community, there is no term. You're a member for however long you want to be a member of the community.
So I started to think differently about how we aggregate together as patient partners or as colleagues working together or those kinds of things.
But the world of healthcare is not structured to support communities in that way because it is so time-bound, episodical, and so on. It's going to take an act of will and a change of how you look at things to actually fund and sustain community.
If you're to some extent in the hospital, for instance, if they decide to do patient engagement they will fund and staff that exercise and that could become a community. It doesn't always, in most cases. There's a pool of patient partners known to the patient engagement specialists but nobody else, right? And the patient partners don't necessarily know each other. They don't necessarily get together unless it's sort of a once-a-year annual do if you will. I’m sure there’s probably exceptions but there's no real impetus for bringing people together as a community informally. We get to know each other over tea and biscuits basically and that's how people get to know each other. Very often it's challenging in a virtual environment, but certainly not impossible. PAN is entirely virtual and has been since the start, so it can be done.
Anna
That's absolutely fascinating and something that I know I always feel guilty about. It's also something that comes up a lot as well in terms of not only helping ensure that every team member feels engaged throughout the study when there's lulls such as for example when you're collecting data, or sometimes recruitment takes a while.
But then when the project ends, everybody gets busy, everybody moves on… through having this community of patient partners, they still are patient partners and they go back among their community and then they can be made aware of other opportunities or even if they're not directly partnering, they can provide feedback and be a sounding board to others. So I think through that as well, we're creating a bigger and bigger critical mass of people who are actively engaged in research and also health care transformation. And I think within that, that's powerful. And I'd never really thought about it that way.
Alies
Hmm. Oh, it's interesting. I want to pick up on 2 things you said. One is I've been on a lot of these research projects and yes there's that sort of dead zone when everybody's knuckle down doing their analysis and as a patient partner you're sort of twiddling your thumbs wondering if everybody went away or not.
And maybe you might have a weekly update or email that might just say, “Still doing analysis. Stay tuned.” And that's fine. But there's an opportunity to have even a monthly get-together [to check-in and say], “How are you doing? What are you doing? Are you involved in other projects? What do you think about things?”
Just an informal thing. Something that may not even be related to the work but a way of connecting as a group. That would be one suggestion I would make within the confines of a research project itself.
I think within the world of research, there are groups of interests that do exist. You of course have the communities that arise around condition-specific situations — diabetes, arthritis — those sorts of things. And in those cases, there are people who do get together and know each other and share. But for those of us who don't have that… what is there for us?
Can we learn from some of those experiences and create communities for people who get involved in system research or health policy or things like that? So I think there are opportunities to do it. The question is who?
Bryn
Absolutely! One of the things that I wanted to touch back on is the idea of creating community. Certainly you had to do it because PAN was at a national level… but the idea of a largely virtual environment, a virtual space, maybe that ties into some of your work with the digital health as well and understanding some lessons learned from that. One of the things I've often heard either in the few occasions I've had to teach or have meetings online is that people say it’s never the same as it is in person.
I would love to pick your brain about what it is that makes it different in person and that seems to be so generative of these rich connections in person as opposed to what we're doing right now virtually. We're having a great conversation, but I would love to be sitting across from you having a cup of tea, and having these conversations. I feel like there's something extra that we're missing because of that, but yet you're still maintaining a very successful online community.
Alies
In person is always delightful. You can read people's body language. You can see where people sit, where they stand, how they move. It gives you a ton of information that the talking heads don't. So you get different perspectives and experiences with people.
Just a small story, but I became very well acquainted and indeed very good friends with somebody during COVID entirely virtually. After 18 months of working very, very, deeply together and getting to know each other, we finally met in person. It was such a shock. Yes, I'm taller than she is. So we were sort of like, oh, this is who it is. We spent the first hour and a half together being totally bemused about now actually being in front of each other after being talking heads with each other for so long.
Even though, like I said, we became very good friends, there is something very special about being in person. There's no question. But some of it is also the between times when I've gone to meetings in person. It's the breaks. It's the washroom breaks. It's the coffee breaks. It's the lunch breaks. It's the walking down the hall when you talk to people and you get to know them and you learn about things and you learn about opportunities that are not part of the meeting agenda, if you will.
So how do we replicate that in a virtual world? You do that by actually allowing for informal chitchat if you will. I found with some of the relationships I've built in some of the work that I've done, sometimes we'll spend as much as half an hour talking about somebody's dog because these things are important. We're humans. We need to know these things.
It was because we did that that I discovered with this colleague who became a dear friend of mine that we had a Dutch connection. It wasn't until the third month of our work that we spent some time chitchatting and she mentioned casually that she had lived in the Netherlands for 5 years. So we went from there, you know?
We would never have figured that out if we had stuck to the agenda. It allowed for not only the deepening of a personal relationship, but it allowed for the richness in the way that we work together. That's really special.
I think we need to make room for these opportunities, but you have to actually schedule them when you do them online. You say, “We're going to schedule having chitchat time now,” or you just segue into it and allow for it.
Bryn
It's funny because you're saying that and I have only ever met Anna online. We've had great chats. But come to think of it, we actually don't know how tall the other person is.
Alies
It is funny! What about how people walk or how they sit or their body language?
Bryn
This is so true.
Alies
It's very important all those things.
Anna
I think we've done a pretty good job of really highlighting many of the different benefits of community building within the patient engagement community beyond even what I had initially thought about.
What would you say then to somebody who's feeling really inspired and would love to start a community of practice? How do they go about doing it? I guess they could find some friends or colleagues that have similar research interests and then what are the next steps? What would you tell them to really help make it stick? And be something that flourishes.
Alies
That is a very challenging question. There are some practical elements to that.
We needed some seed money to make PAN go.
Some of us dug into our pockets for that because you do need that. It costs money to incorporate, which we are. We're an incorporated not-for-profit. We needed money to create a website to start the ball rolling. That's one thing that you need.
The other thing you need is you need at least one person who is the driver, who is really committed to doing it, and preferably more than one because it gets pretty lonely if there's only one. You need someone who understands how to put wheels under things and who can listen to the community because you need to hear what the community wants and where they want to go.
That's something that we do as regularly as we can in PAN. We do surveys, and we also listen and look at the conversations that are happening on our discussion board to get a sense of what people want and where they want to go. It needs to be topical and vital. You need to know what's in it for people to be there. Are they just going to be listening? Is that what they want? There are people what you might call lurkers. Any social media network will tell you that there are people who are the actively engaged and then there are people who just read. They look around to see what's going on to inform themselves, but they don't actually participate in an active way.
Bryn
Looking ahead then. In your ideal world, where would you want to see patient partnership communities grow? Or how would you see them grow?
Alies
If we take for instance the research world, it would be really interesting to see if there was a community of patient partners who were involved in research. It could even be an offshoot of PAN or a subgroup in the same way that our digital group is a subgroup. They could learn from each other and formally connect as a group. Outfits like that are communities of practice for patient engagement folks because there's an intersection of interests. The interests are not identical, but there's definitely an overlap. That would be one thing I could see.
You could have groups of patients attached to the different units of interest. If, for instance, one were an organization and wanted to support that — you could actually create a national meeting for 2 days where you pull all the patient partners that are involved in research through SPOR together and see if they want to develop a community of their own, what that would look like, where it would be housed, how it would be funded, and so on and so forth.
Ongoing funding is definitely an issue. You could create something like that and be tethered to CIHR, SPOR, SPOR groups, or whatever. When you're tethered you sacrifice a degree of independence, but maybe that's okay too. At PAN we chose to stay independent. That's okay too.
Anna
I’ve learned so much and am thinking about things in so many different ways than before and that's saying a lot because I think about this stuff all the time. So thank you so much! Another thing that's really coming out for me that I hadn't realized pertains to shifts in power. For patient partners and academic researchers to be equal partners, they truly have to be equal partners. Communities of practice, especially independent ones, have the capability to create that which is really powerful as well.
So I think moving forward if we do want to create a future state where patient partners and academic researchers are equals, these communities of practice will be integral to that.
Alies
I think that could be very exciting because we could imagine a community of practice of patient partners in research in Canada who contribute to setting the research agenda, who identify the kind of training they need because they will know more than anybody else exactly what they need, and who set the evaluation criteria for collaboration with their research partners.
There is a lot that could happen to mature the whole patient engagement landscape in research through the pulling together of a community of practice for patient partners in research. There's no doubt in my mind about that and who knows once they get together what else they would cook up that would be useful.
Anna
I was thinking back to a study we carried out as the first step of this podcast where we surveyed academic researchers and patient partners engaged in SPOR funded research. We had a heck of a time identifying patient partners. We had to go through academic researchers and ended up using social media as well. Even with things like that — you could go to this organization that has their own patient partner membership registry and they could help you that way as well.
Again, it's shifting that power. Currently you have to ask an academic researcher to identify patient partners. Well, now you could identify patient partners directly [which is important] because they're legitimate researchers like academic researchers as well.
Alies
Right. That's an enormous plus. The other thing is that very often new patient partners or newish patient partners will approach me and any one of my colleagues saying how do I get involved in research?
What do I say? Where do I point them? I've had very little luck or they have had very little luck being pointed to the SPOR units themselves. So being part of a community like that where opportunities are brought to the community for partnership on projects would be very exciting. It could basically have PAN’s structure and could function as that, but we are not just for research.
Anna
So then, a last question before Bryn asks our wrap-up one. I guess that in order to be a member of PAN, you obviously have to be a patient partner. So my question is 2 part. One — is membership open to any patient partner? Two — for researchers like me who now think your organization is the coolest thing in the world, is there a way for us to reach out and make you aware of opportunities?
Basically, how does one connect with your network, whether you're a patient or a researcher?
Alies
That's another wonderful question. I kind of skipped over this when I was talking about PAN.
For a patient partner, or somebody who's interested in becoming a patient partner, if they go to our website, there's a join button and they can fill out a request for membership. Membership is free.
That's one of the reasons why we're happy to do the consulting business — then we can make sure that it's equitable and that people who have difficult means can still join and not be penalized for not being economically robust. That's how patient partners would join us.
Researchers like yourself or anybody in any part of the of the health system who is looking for a patient partner can also go onto our website. We have another form there that's for posting opportunities and you just fill out the form with all the contact information.
There's a number of fields that you need to fill out and then post it to the community. If someone sees your post and is interested, they can respond. That's basically how it works.
Bryn
That's great. We'll make sure we have all that information on Substack as well. Before we wrap up though, is there anything that you want to make sure that our listeners hear about or learn about with the work that you're doing and the many projects that you have in the fire?
Alies
I think I've covered most of it really. I just want to quickly touch on the capacity building piece because a lot of it is peer learning.
Community allows for peer learning. So that's another important factor. We all know that when we're researchers on a research team we learn from our colleagues. Right? You learn from people and you know who to go to for advice and so on. That's true for patient partners too — if they're given the opportunity to be together and to know who everyone is.