DHiC 03 – Patient Partnership and Leadership

Alies Maybee: When you’re providing care to people, it’s not providing them widgets, it’s providing them care as human beings.

Katie Bryski: Hello and welcome to Digital Health in Canada, the Digital Health Canada podcast. My name is Katie Bryski and I am a podcaster turned digital health professional.

Shelagh Maloney: And I’m Shelagh Maloney, a digital health professional turned podcaster.

Katie Bryski: We explore the who and the why behind health care technology in Canada.

Shelagh Maloney: And today we’re going straight to the leading edge of change. Patient partnership and patient leadership are core components of health system transformation and improvement. In this episode, we’ll explore strategies and models for meaningful collaborations with patients, the impacts of patient leadership, And the journeys of two remarkable leaders in this space.

We’re very pleased to welcome today, Alies Maybee and Adrienne Zarem. So let’s get started, maybe with introductions. Alies, we’ll start with you. Tell us a little bit about yourself, and what motivated you to get into Patient partnerships?

Alies Maybee: Hello, my name is Alies Maybee, as you said. So, what started me on this, I guess, was when I was 12, my father died of leukemia after a three year long illness.

And caring for him at home and visiting him in the hospital gave me a lifelong interest in healthcare. Then, when I was in my early twenties, I had a near fatal car accident, and I’ve lived with the after effects of that ever since, plus I seem to be accident prone, so I have a great acquaintanceship with the acute care system.

That sort of led me to think about healthcare from a more systemic point of view, and that, I think, also was triggered by the fact that my career had been working in technology designing systems and implementing large scale systems. So I saw the benefit of technology and system change, I also saw the challenges for culture change that come along with it.

So when I decided to step away from work, I approached my local hospital in about 2011 to see if I could help with their quality improvement projects, and that’s how I got started. From there, I got to know some other patient partners and got involved in research, and one day some of us were having coffee and we were benefiting so much from, you know, just getting to know each other and learning about some of the tips and tricks to being an effective patient partner.

So we thought, gee, I wonder if there’s an organization that could be just for us. We looked around. We looked through Canada, the UK, the US. We didn’t find anything that met our needs. So then the question was, what do we do? So we decided to make our own. And that’s when we linked up with 12 of our colleagues from across Canada and we created the Patient Advisors Network, or PAN, which we launched in 2017.

And PAN was really, really like a community of practice. We wanted to build our capacity and support each other in the work that we were doing. But we also thought the other objective would be to bring our collective voice, our collective wisdom, and share that. With the health care ecosystem we support ourselves through the work that we do as partners in health care And that’s such where PAN is entirely independent of any host organization or any government So I think I’ll leave it there But that’s basically how I got started and what my main sort of efforts are to date.

Shelagh Maloney: Thanks, Alies. I love that lifelong journey. Adrienne, what about you?

Adrienne Zarem: Thank you so much. Yes, so I’m Adrienne Zarem. I would say, you know, first and foremost, I’m a wife and a mom to two kiddos, both of which have neurodevelopmental differences. One received an autism diagnosis at the age of two and the other received an ADHD diagnosis kind of midway through childhood.

So, I do have a background in healthcare as a licensed chiropractor, but to be honest, the majority of, of my time and energy and efforts in the health system in the last many years has been a caregiver partner to both of my kids. And so the youngest one received services at Holland Bloorview Kids Rehabilitation Hospital.

Which is where I partner now. And that was really my first foray into partnership, was becoming a family leader at that organization. And when we first became clients of Holland Bloorview, I was honestly a bit dumbstruck with how family centered and how focused on the needs of kids and their families.

The organization was and, you know, there were obviously gaps in, in many of her services and things that I thought, wow, you know what, could I contribute to making this even better? But in general, they just were so much more focused on the needs of clients and families that I really wanted to get closer to them and to learn from them and to learn with them and to help them hopefully create change in other settings. Because we found that when we went into other settings, you know, the care wasn’t always as centered as it could have been on clients and families. So that’s really what got me kind of excited and invested in this work. And, and much of the work that I, that I’ve done at Holland Bloorview has really led to other work with Accreditation Canada and Health Standards Organization and now with Healthcare Excellence Canada.

So it, it really kind of started that fire in me when I started my partnership work at Holland Bloorview that, you know, this, the work that, that’s done locally can often have ripple effects to create system change. And so the more and more I got into it, the more and more I got excited about its potential.

Katie Bryski: Yeah, it’s that cascading effect. The small change can be the leverage point to a larger change. And what I just find so fascinating about both of your journeys is you’re obviously very embedded within the system, but also have this ability to look at the system as a whole. And Adrienne, I’m particularly interested in the diversity of patient partner experiences you’ve had: Holland Bloorview, now at, uh, Healthcare Excellence Canada, being an embedded patient partner. Do you find that the work is different with these different models of patient partnership?

Adrienne Zarem: Yeah, I mean, I would say in my role as an Embedded Patient Partner at Healthcare Excellence Canada, my work is really to support capacity building related to engagement and partnership within the organization, and also to support teams that we’re working with to engage with caregivers and patients and communities in their work.

So the scope is quite broad in that work, and I think that’s what I really love about it, is it’s the It’s this limitless potential that I think we have given that we’re a pan Canadian organization who works with many, many different groups and people. And so in that way, I think it’s been a really great privilege to be embedded and to spend full time, my full time hours on my efforts as a, as a patient partner there.

Because of that, that scope and because I can really focus my efforts to, to trying to grow who we are as an organization and how we can help others in the field.

Katie Bryski: Can we dig a little bit deeper into the capacity building? I’m just interested because It’s this idea of an upstream intervention, almost, instead of trying to append those partnerships onto the end of a project.

Adrienne Zarem: Yes, so the capacity building that we do at Healthcare Excellence Canada, I think, is really important so that we can all, you know, learn how to work together well. And I think we can’t expect others to partner meaningfully and partner well if we are not, you know, walking the talk and, and building the capacity within our walls to do the work well.

So in addition to supporting others, we do put a great focus on ensuring that we have, you know, foundational resources and processes and ways of working to ensure that we’re doing partnership in a good way that’s respectful and reciprocal and honors the relationships that we’re trying to build with patient partners.

Shelagh Maloney: I love that relationship building and walking the talk, and I think that’s so important when you’re trying to bring others along, as you said, and really, I think your roles are both around education and awareness building. And I think, you know, Alies, you recently went, won an international award. So I think it’s Made with Patients Champion Award, an international award.

And you and I were speaking about a month or so ago, and you were telling me about going to this international conference and meeting other people and one of the things you told me that really struck me was that Canada was seen as a global leader in patient engagement and I hadn’t thought of that.

Can you maybe elaborate on that a little bit?

Alies Maybee: Well, that was an amazing experience. The conference was about 200 and some odd people, many of whom were patient and caregiver partners, what we would call patient and caregiver partners and they would call themselves patient advocates. from all across the globe, but primarily Europe.

And yeah, it was very interesting because people would introduce themselves to me and they’d say, hello, my name is, and my condition is, and my organization is the organization for, you know, breast cancer or HIV or, and they would name a condition. And then they’d look at me expectantly, and so I said, well, my name is Alies Maybee.

I don’t have a condition. I’m interested in system change. And my organization doesn’t do anything other than support patient and caregiver partners. And so it was a very different thing. They didn’t know quite what to make of me. What I see in Europe in particular, uh, not so much in the UK, which I think is a little bit more like how we operate, is that there’s a huge focus on patient advocacy and patient organizations, usually sponsored either by pharma, or by government.

There weren’t any that were independent that I could see anywhere, and I haven’t done a recent search, but when we looked before we started PAN, we realized that there weren’t any independent organizations. They’re wonderful people. They’re doing wonderful work. They’re very involved and embedded in research and in lobbying.

That seems to be their foci, and so less involved in quality improvement or policy development or healthcare education for professionals or any of the other things that you see more readily in this country. And I’m half European, I’m half Dutch, and so one of the things that I realized is that the Canadian society, our culture is actually a very flexible culture and that flexibility means that anybody from anywhere feels moderately comfortable or feels like they have at least the right to speak up.

And that’s not as true in Europe. In my mother’s country, they talk about staying in your lane. So if you are focused or your life is focused in one direction, you don’t comment on people’s work in another direction. So I think that that’s one of the reasons why Canada is able to do things. And we are seen, because we are involved in more than research, as a bit of a leader.

Shelagh Maloney: Alies, look, I love that differentiation. And when you talked about, you know, in Europe, and it’s almost so the patients become the researchers and the academics and they are very educated around their disease. Whereas in Canada, it’s more about patients advocating for one another and ensuring that the health system can relate to and speak to patients and meet them where they’re at. And I think that’s a, that’s a significant differentiation. And it sounds like both of you are very much that’s what your roles are and having this system, not talk down to them, but talk with them. And, you know, you talked about quality care and you talked about those other outcomes.

I think that’s, that’s really important, and I, and I love that differentiation.

Katie Bryski: Yeah, and I was just struck a little bit by the sort of nuance between partner and advocate. And Adrienne, I think that this speaks to what you were talking about, having partnership in a good way, and it’s, it’s centering relationships.

Adrienne Zarem: Yeah, it’s, it’s such a good point. We talk about it often, and I think change happens most naturally and most effectively when we build relationships and we become partners in the work. And so, you know, while there, I think, is a place for and a great need for, in some situations, advocacy, When we think about system transformation, and we think about making big changes, I think partnership is an approach that’s probably more effective and leads us to change more quickly than a kind of advocacy stance.

Alies Maybee: Yeah, I, I totally agree with Adrienne, and I think that there is a role for advocacy. I mean, we wouldn’t have had the new blood system if there wasn’t tremendous advocacy around the HIV crisis earlier. So I think there’s sort of like two hands, if you will. Advocacy on the one hand, and then those of us, like Adrienne and myself, who plunge in and embed ourselves in the system and make change there.

I think both are needed, and for me, I feel like being inside the system is the more effective way that I can use my time at any rate.

Katie Bryski: So, Alies, noting that you use the blood system as an example of advocacy, I’m wondering about examples of patient partnership, patient leadership. Are there projects or initiatives that you’ve been involved with, um, maybe that you’ve seen colleagues be involved with, that you’re particularly proud of?

And what makes them stand out? Like, what were the impacts?

Alies Maybee: So, I have two in mind. The first is through PAN. We partnered with CIHR, the Canadian Institutes for Health Research, to provide a report for their SPOR Refresh Initiative. They were looking at how to, uh, renew their strategy for patient oriented research.

And we were able to reach patient and caregiver partners who were interested in research but had not found their way in, which was able to give CIHR new knowledge because they had no way of reaching those folks in the way that we were able to. The other piece of that was we had data from over 262 people who responded to our survey.

And we were able to provide some insights about being outsiders to research, because many of us, while we’re patient partners, mostly people still feel like outsiders, and we realized that we identify very readily the symptoms. But not the cause. And we were able to really, with the data, look at the cause, which we felt was the unconscious cultural lens of the research work culture, which biases against valuing patient partners.

So that was one. The second one is not pan related. I’ve co initiated EMPaCT, which is a community table with my colleague Ambreen Sayani out of Women’s College about four years ago now. And what we did is we got together with some colleagues that we knew who were, if you will, people who were not usually at the table.

And we And so, what the decision was, and it was a joint decision amongst all of us, that we wanted to focus on health equity and create our own table and invite health care providers, health care researchers to the table to consult with us. And that has flipped the power dynamic. It’s a whole new model of patient engagement.

One that addresses the equity, diversity, and inclusion aspect, and so I’m particularly proud of that one because I had, for some years, wrestled with the notion of how do I, as a privileged patient partner, bridge the gap between people who are not usually at the table and the healthcare community who needs to really hear from them because they have very valuable things to say that are not readily apparent to those of us with privilege.

Shelagh Maloney: I love that stretching of the power dynamic. That’s so awesome. That gets back to the comments about relationships, right, is understanding what the relationships are and bringing the folks to the table that need to be at the table. And I think, you know, Healthcare Excellence Canada does a great job of doing that as well.

And do you have examples of patient engagement wins, as it were?

Adrienne Zarem: Yeah, thank you. It’s funny, you know, we often talk about bringing patient partners to the table, but I think, Alies, you gave a really wonderful example of creating tables that professionals come to. Or perhaps, you know, scrapping this idea of having tables and really just bringing people together, going out to community, listening authentically.

I think there’s many ways for us to think about how we engage that would, would be more effective and would be a safer space for people who are not typically engaged in, in engagement to feel like they can contribute and they could be a part of. I always, you know, think about this idea of the table and wonder whether we need to broaden our thinking related to that.

So I, I think at Healthcare Excellence Canada, perhaps one of the, the programs or initiatives that I really think was impactful and continues to be impactful is the Essential Together program. And so, you know, that one was, was an open access program. It was born out of essentially caregivers and families being locked out of many healthcare organizations early in the pandemic.

And so a program was designed together with patients and families to support really the reintegration of essential care partners into healthcare settings in COVID and, and beyond. And so it was open access, continues to be open access. So unlike other programs where you may have to, you know, fill out an application and it kind of be accepted, this is something that was and is open to everyone, and it’s really a program that focuses on guiding and impacting policies related to essential care partner presence and kind of the implementation of policy guidance.

And so there’s evidence briefs and there’s policy scans and a change package and I think I know that the program really did help shape many caregiver presence policies across the country and that there’s, you know, many patients that got higher quality, safer care because they had the support of their essential caregiver partners with them when they needed them.

So that’s the program that I, that I always get really excited about. And at Holland Bloorview, I think, you know, as it relates to, to the work that I do with the Autism Research Centre and the Autism Department, the wait times are long. They’re often months and months long. And often families are left with a lot of anxiety during the time before their child’s assessment.

And so, you know, Holland Bloorview brought together leaders and clinicians and family leaders to think about how do we improve the experience of clients and families while they’re waiting for, for assessment. And so lots of really neat initiatives were developed. Now, kids under four get a consultation, a phone consultation with an allied health professional after the referral is accepted to really understand that child and family’s needs and to direct them to the resources that they can access while they’re waiting, even without an assessment or a diagnosis.

And there’s been a online discussion group that’s now delivered by families for families that are waiting on that wait list because for many of them it’s a really stressful time and they don’t have, you know, a network of other families who perhaps are experiencing some of the same things. And so it creates a safe space for families to come together to talk about, you know, the emotions of waiting and, and the concerns that they have for their kids.

And then the clinical pathways themselves have been revamped. So. Now there’s a tailored approach to assessing kids and teens and we take into consideration clinical and medical and psychosocial complexity, so that we know that when kids get to the organization that they see the right people for the right period of time, such that the professionals can make a diagnosis that’s rooted in, making sure they’ve assessed all of the kiddo’s needs so that’s another one that I’m really excited about and you know as one of those families who Who received a letter from the hospital years ago that literally said we’ll see you in eight months and just sat and waited and fussed and worried myself Many sleepless nights, I, I feel really good about the fact that although the wait times are still significant, we’re providing some support to families while they wait and hopefully, you know, that makes a little bit easier and they, and they start their journey a little bit earlier than they would if they just, you know, waited for the assessment alone.

Katie Bryski: I mean, talk about real world impacts, right? I can just imagine the impact that it would have for a whole family to go through a journey like the one that you described, right? One that is It’s focused on communication and connecting them to others, going through similar things and connecting them to support.

And then as you say, starting that journey earlier and in a different way, the, the knock on impacts of that. I’m also thinking for both of you, what you’re really describing is not just changing the system, but building a new one, right? Like from the ground up, you’re building these very person, patient, family centered models and ways of doing things.

And honestly, I’m kind of sitting here thinking, how? You know, how, I guess I’m curious about how you were able to bring people along to do these really remarkable things.

Alies Maybee: I think that’s a really good question. In some cases, I feel like I’ve sort of backed into what I’m doing. But I think it’s also driven by a desire to see that things are better and to bring my colleagues who feel the same along for the ride.

So, you know, It’s mission driven, and I sense that with you as well, Adrienne, that we’re all mission driven, and that makes a huge difference. Because healthcare is a relationship based endeavor. When you’re providing care to people, it’s not providing them widgets. It’s providing them care as human beings.

In the work that we do, it is all relationship driven. So building relationships one at a time and then opportunities arise and you start connecting people and things start to happen. And I think people don’t go into healthcare thinking that this is just a job. Generally speaking, they go because they give a darn.

They want to make things better for people. And so, Our work taps into that, and therefore, I think people are a little bit more open to actually working with us, and yes, there’s some resistance for people who feel their power is being threatened or whatever, but there are so many people who really just want to care well for people and are willing to collaborate with others who feel the same.

Adrienne Zarem: Yeah, Alies, I, I totally agree, and I, and I think there’s also some, some really nice levers that have been built into our system now, and. Some of those relate to Accreditation Canada and Health Standards Organizations and, and the criteria that they have developed together with patient partners and with patients, caregivers, and communities to hold organizations to account.

And so, I think that’s helpful, that, that helps people kind of understand where the goal line is. And what we perhaps are hoping to move towards, but to your point, Alies, it’s always relationship based and so coming together and learning to work together and appreciating that we create better systems and better services when they’re designed with the people who are going to use them, you know, once we create momentum after having done that a few times, then, you know, we’re in a much better place.

To encourage others and to show the evidence as to why it’s really a great idea to be working together in partnership with patients and families.

Shelagh Maloney: You know, I just want to pick up on that Adrienne, because I think that’s such a valid point around making a difference and demonstrating that difference and, and building that momentum because one change then leads to another change.

You know, I’ve been to meetings and conferences where, where there’s been patients at the table. It changes the dynamic of the room. It really does. And when you start with a patient story, and you know, Alies, you’re right, like, you don’t go into healthcare is not a job like other jobs. It’s, there’s a, it attracts a certain type of people who want to improve the lives of others who are sick and vulnerable.

But sometimes you just get caught up in that day to day and this is the way it’s been. This is the way it always has been. We don’t have time to do those things. And I think it’s the presence of the patients keeps them accountable a little bit and says, Hey guys, you know, just a reminder that we’re doing this.

We want to improve the patient experience. That’s our number one goal. And when you hear stories and you hear about recommendations from patients who say, you know, if you just sent me a text saying that, you know, we haven’t forgotten about you, or give me some information before, you know, I have to wait eight months.

Like, those are the little things that make such a difference. And I think not only to the patients, but to the organizations as well. And there’s lots of studies that say that when patients are engaged and involved, they’re more confident in the care they receive. They have better relationships with their care providers and they have better outcomes, which at the end of the day is what exactly that we’re looking for.

So I just love some of those examples that you’ve given and the leadership that you and others are undertaking in this role. And so as leaders in this role, and obviously you’re very articulate and you’ve got a breadth of experience. What advice would you give others who are looking to, you know, maybe listening to this podcast and saying, Oh, I’d love to get in there and help.

And what can I do? What would you tell them?

Alies Maybee: So I’ll, I’ll start. I’ve had people approach me and they’ve said, you know, this terrible thing happened to me in healthcare and I want to get into the system and make changes. And I understand that you’re doing it. How do I get involved? And one of the first things I would say to them is make sure you deal with any of your personal issues and emotions around those experiences before you engage, because you need to deal with that before you can be free to get involved in the system and not be trapped by unresolved issues for yourself.

The other thing I would say to them is seek out others who are doing this work and develop a support system because it’s very emotionally taxing work in many cases. It’s one of the reasons why we formed PAN and I would also encourage them of course to join Penn because we have offer a lot of webinars and so on internally to our community to help build the skills that are needed to be effective patient partners.

So, I think those are the things that I would suggest.

Adrienne Zarem: Those are great suggestions, and I, you know, I think more and more we’re seeing organizations large and small have departments and have systems and structures to support engagement and partnership. So, you know, even in primary care settings, even, you know, when there are only a few care providers, some of those even have family councils that patients can join.

Most large organizations have engagement and partnership programs and opportunities for people to be involved at the local level, at the national level. Also to your point, Alies, I think having support of other caregiver partners or patient partners is really important. Um, I think all too often when we go into engagements, we can be the only person in the room and that can be difficult.

And so, you know, aligning yourself with others that are doing this work, encouraging organizations to bring in more than one partner at a time is, is really helpful. So, I always encourage people when they’re asked to kind of go solo, to push organizations to make sure that, you know, they’re not asking one person to represent an entire community.

You know, we can’t do that. And to always be thinking about, you know, what voices are not in this room and how do we reach those voices and how can we perhaps amend how we’re working to better integrate those people into, into discussions. and deliberation. So I think there’s lots of space, I think, in Canada for patient partners to be involved.

Not to say that, to your point, Alies, that it’s not often really hard emotional work it is, but more and more when people identify that they want to be involved, there’s actually many opportunities for people to be involved.

Katie Bryski: I’m appreciating the centrality of relationships. throughout this conversation.

Curious too, like Adrienne, you touched on this a little bit in terms of organizational practice to help set patient partners up for success. So certainly trying to not have just one patient partner at the table. Are there other pieces of advice or practices that organizations could take to make the experience of partnership better?

Adrienne Zarem: I think it’s really helpful to ensure that organizations are really deeply committed to this work before they engage in it. So thinking about strategy, thinking about values, ensuring that, you know, engagement and partnership are really deeply rooted in strategy and or values because that’s what will sustain this over time, you know, creating the resources, both people and financial resources to be able to form these relationships and create these opportunities to bring people in.

That’s really important. And then just some of the fundamental pieces about frameworks or guiding principles or ways of working with patient partners that are clear and transparent. Transparent so that there’s consistency across organizations. You know, we often run across champions in this work who do it so well in one pocket of an organization and then move to the other side of the organization and see like, “Oh, it’s not working as well as it did over there.”

“Why is that?”

So you know, utilizing structures, resources, processes to create consistency so that patient partners can sustain their desire to be involved because they can appreciate that they’re gonna have a consistent experience and that they’re gonna be valued in a similar way across the organization.

Alies Maybee: Yeah, so I, I’ve thought about this a lot because I, I think about models of patient engagement, and we have, generally speaking, a model, which I will call institutional patient engagement, where you have a pool of patients, you have people who are supporting them in a patient engagement role. You may have a council, so those are models that we see frequently across the landscape.

In some cases it works very well, in other cases maybe it is a little bit not so well for many of the reasons that Adrienne has mentioned. What I, I think we need to challenge ourselves that this is a model. It is not necessarily the model for patient engagement. There are other ways of doing patient engagement and we need to think about what they are.

We maybe should be thinking about, in some cases, co designing new models of patient engagement with patient caregiver partners that are fit for a particular purpose, because the institutional model doesn’t fit all purposes. It doesn’t fit all patient partners either because it usually asks that we go to the institutional location during institutional hours, which means that that will exclude a lot of people just in and of itself.

So how do we include them? That means maybe thinking more about what we mentioned earlier, and that is going to where people are instead of asking them to come to where we are. I think there’s a lot of room for that. I know EMPaCT was an effort to try a new model. PAN has been working with other models in some of the partnerships that we’ve had.

But I think there’s a lot of room for it and there’s appetite for it now as well, because we’ve been doing this for enough time. So that would be what I would suggest. Consider looking at the models that might work better for the kind of work that you do, and co designing them with the people who are involved.

Shelagh Maloney: That one size does not fit all is so valid, and it’s a great segue into the next question, I think, because there’s two things that you said, Alies, that made me think about this. One is that we’ve been at this for a long time. And there are some very successful models, and there’s lots of opportunity and work to do.

And, you know, we’re around in the very early days with the Nothing About Me Without Me and e-Patient Dave. And actually, I looked it up yesterday because I was curious. It was in 2012 when Leonard Kish, who then was an IT consultant in the U. S., and he said, if patient engagement was a drug, it would be the blockbuster drug of the century.

And he went on to say it would be medical malpractice not to use it. And that was in 2012. We’ve certainly come a long way. And I’d love to hear from both of you. Are you optimistic about the future from 2012 to 2024? What progress have we made? And what will 2025 and 2035 look like?

Adrienne Zarem: I can say I’m really optimistic about the future.

I think progress is definitely being made. There’s momentum across the country and, and across the world, but specifically in Canada, there’s, I think there’s definitely momentum. You know, more and more organizations are prioritizing engagement and partnership. They’re creating spaces. They’re creating spaces for patients to lead in this area.

And that’s something that it’s taken some time. I think there’s more and more of an emphasis on community engagement and this building relationships with not just with individuals, but with communities. Peace. And then I, I think there’s more so of an equity informed approach and perhaps a trauma informed approach that people are taking to engagement and partnership that I think is really going to help support bringing voices into discussions that typically haven’t been part of discussions before.

So I think that’s going to really help as we think about the system transformation that we need in Canada. It’s going to be important to include those voices that aren’t typically included through thinking about taking equity informed approaches and trauma informed approaches. So, yeah, I’m quite optimistic.

I know we have a lot of work to do, but I think we’re well on our way.

Alies Maybee: I’m with Adrienne. I’m very optimistic, actually, and one of the reasons is, ironically, because our systems are in crisis, and we’ve been through the COVID crisis and so on, and my observation is that crisis opens opportunity. People who were hidebound and not wanting to change prior to this are now looking around and thinking, Oh, the same old, same old isn’t working.

Perhaps that opens the door to trying new things. And I do see that everywhere in healthcare, that there’s more and more appetite to try new things in ways that there weren’t before to risk in ways where risk was considered off the table before. And that’s what’s really needed to make change, is the willingness to fail fast and learn.

And that’s not usually part of the healthcare makeup, but with more focus now on learning health systems, which really require you to fail fast and learn. And with the crisis and the need to change, I think there’s a, an opportunity now, which hasn’t been there since before COVID. So, yeah, I’m optimistic.

And I also think we’ve come a long way. When I think about the first strategy for patient oriented research, when that first came into being, I believe around 2010, patient engagement was still new, and I remember in those days having to explain myself in great detail and people being mystified about what I do, and that’s less the case now.

I think we owe a lot to the SPOR effort to bring patient engagement to the forefront, and that has seeped out of research and into a lot of other areas. Nooks and crannies of the health system so that, yeah, I’ve seen colleagues getting embedded in all kinds of interesting places and we’re now in talks with innovation centers to see if we can embed patient partners in healthcare innovation.

So, yeah, I think the future is bright. Can we do enough of this fast enough to rescue and change our systems? Well, certainly, we won’t go down without a fight.

Shelagh Maloney: Your optimism and your passion absolutely shines through.

Katie Bryski: Yeah, and in that optimism and that passion, being brave enough to reimagine how we do healthcare.

Not just digitizing old processes, but building new and better and more inclusive ways to do things. We want to thank you so much for taking the time to chat with us this morning. Your wisdom and your perspective and your experience has been so appreciated.

Alies Maybee: Well, thank you so much for the opportunity to have this discussion.

This has been really fun.

Adrienne Zarem: Thank you so much. And for your work to elevate engagement and partnership. It’s wonderful to be able to have these opportunities to talk about the good work that’s happening and to try to spread and grow.

Katie Bryski: So what did you think, Shelagh?

Shelagh Maloney: You know, we say this after every episode, but the caliber of the conversation and the discussion, it was so amazing and, and you know, the passion and the commitment, and they all come from.

Deep personal experiences and I think that’s one of the points that Alies made was this is they’re all mission driven. They are doing this because they really do want to transform the health system and that just comes across in spades when you have those kind of conversations. It’s incredibly inspiring.

Katie Bryski: I was so taken with this sort of idea of broadening horizons, right? It’s like we don’t have to fit people and patients to the existing system. We can collaboratively, collectively. Build something better. And I think that’s why a lot of patients get into being patient partners and patient leaders. It’s that belief that better is possible.

And not only possible, but necessary, right? Imperative.

Shelagh Maloney: And I think, you know, one of the other things that I really liked the conversation, and I think it was Alies that talked about the crisis that the health system is currently in as a driver for improved patient engagement. And one of the other things now we’re talking about patient partners, but we’re also talking about patients as leaders and patient leadership is really something that didn’t exist.

I would have said in 2012 or 2010. It was like, okay, we have to form a committee and we’re going to assign somebody at the hospital to do this, et cetera. And now we’re seeing people like Alies and people like Adrienne who are leading these initiatives and truly are leaders in the space, not just in the patient space, but in the health space.

And I think that’s a significant change.

Katie Bryski: Yeah, and I think it’s this recognition, too, that patients bring their whole selves To their work just as, just as we all do, right? They have a particular expertise in the system and in their experience in it, and they have everything else they’ve done in their lives, their careers, the skills they’ve built, the perspective they bring.

And it’s great that more of that is being utilized, more fulsome. And I also wanna note a lot of callbacks to the innovation episode that we just did. Uh, so listeners, if you have not yet had a chance to check that out, please feel free. But, this idea of being supported to do scary things, to fail forward, to learn fast, I think came through very strongly.

Shelagh Maloney: Well, and the other thing about, you know, episode 2 and episode 1, that’s consistent, and that, that we’re finding, and not surprisingly, but relationships. Whether you’re building relationships to be innovative, whether you’re building relationships to, you know, implement an AI solution, whether you’re building relationships to improve patient outcomes.

Relationships are key and sort of across all the conversations we’ve had so far on these podcasts. So a really interesting thread worth noting.

Katie Bryski: And will that thread continue in episode four? I guess we will have to wait until next month to find out. Listeners, thank you so much for joining us on Digital Health in Canada, the Digital Health Canada podcast.

We will see you next month with a new episode. Thank you for listening to today’s episode. Digital Health Canada members can continue the conversation online in the Community Hub. Visit digitalhealthcanada. com to learn more. Be sure to subscribe to the podcast to get new episodes as soon as they’re available.

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