S2E9 - Engaging Youth and Families: A Practical Discussion with the CHILD-BRIGHT Network - Interactive Transcript
Overview
In this episode of asPERusual, host Anna Chudyk sits down with Carrie Costello, Annette Majnemer and Gillian Backlin from the CHILD-BRIGHT Network. Our discussion includes:
An overview of CHILD-BRIGHT, including its key activities and ways to get involved;
Different ways in which CHILD-BRIGHT is actively seeking to increase diversity within their network;
Practical considerations for engaging with youth and families in research - from initiating relationships to evaluating engagement work.
Tips for fostering authenticity, respect, and reciprocity, and creating environments where engagement can thrive.
The CHILD-BRIGHT Network is a pan-Canadian patient-oriented research network based at the Research Institute of the McGill University Health Centre. Created in 2016, it works to create brighter futures for children and youth with brain-based developmental disabilities and their families. Funded by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) and 15 funding partners across the country, this national network includes 500 researchers, clinicians, decision-makers, youth, and parents.
Meet our guests
Carrie Costello is the Implementation Support Coordinator for The Center for Implementation. She is a graduate of the University of Victoria BFA program and came into research after her middle child was diagnosed early in life with a profound intellectual disability and a seizure disorder. She has been a parent partner in research on over 15 projects and is the primary co-investigator on two of these research studies. She specializes in facilitating conversations with children and youth. Carrie is the parent liaison for the CHILD-BRIGHT Network and previously was the Patient Engagement Coordinator at the Children's Hospital Research Institute of Manitoba. In 2023, she won the Frank Gavin Patient Engagement Leadership Award and the Made With Patients Rising Star award for her work. Carrie is also an award-winning playwright for young audiences and an avid puppeteer
Annette Majnemer, OT, PhD, FCAHS is an occupational therapist with doctoral training in the neurosciences. She is Professor at the School of Physical & Occupational Therapy, a Senior Scientist at the Research Institute - McGill University Health Centre (Montreal Children’s Hospital), and a member of Montreal’s Centre for Interdisciplinary Research in Rehabilitation. She is the nominated principal investigator of CHILD-BRIGHT, a CIHR SPOR Network with patient-oriented research focused on children with brain-based disabilities and their families. CHILD-BRIGHT’s mission is to foster a movement for change: moving patients into research teams, moving research into improved practice and policy, and moving children and families forward towards brighter futures.
Gillian Backlin is a member of the CHILD-BRIGHT Network’s National Youth Advocate Council and serves on other panels and committees within CHILD-BRIGHT, where she uses her skills and draws from lived experience to contribute. Gillian has completed the technical writing certificate at the British Columbia Institute of Technology and currently works as a research assistant while pursuing her bachelor's degree in public health. She also manages an online platform called Spastic & Fantastic to share her life and raise awareness about the stigmas associated with labels, such as “disabled.” In her free time, she enjoys spending time with friends, family, and her dog.
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of Contents
Check back here for our interactive table of contents - coming soon!
Resources
All of the resources below are free for everyone to read:
Transcript
Anna
Hi everyone. Welcome to season two of As Per Usual, a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. As those of you who are familiar with the podcasts know the season, we are focusing on bringing awareness to entities that are funded by the Strategy for Patient Oriented Research, or SPOR for short. In case you're unfamiliar, SPOR is a national coalition that was created by Canada's major public funder of health research, the Canadian Institutes of Health Research, referred to as CIHR, to champion and support research that focuses on patient and public identified priorities and outcomes and engages patients and the public as members of the research team. Patients and the public who engage in this research team member capacity are often referred to as patient partners or persons with lived experience.
Now, every episode is a special episode, but this episode is extra special because it's the last full length episode of season two. After this one, we're likely going to release a follow up onePERspective episode and then take a break and regroup over the summer. This break will hopefully create the time and space for the beefing up of our YouTube channel, and for the podcast to venture into other platforms like Instagram and maybe even TikTok to help better disseminate all of the wonderful knowledge that our guests have shared with us over the two seasons. Please venture over to our website asperusual.substack.com, or add me on LinkedIn by searching Anna M. Chudyk. If you want to stay in the loop with these developments.
Beyond that, the plan is to come back in the fall, starting with the last of the SPOR funded entities that are interested in coming on this podcast and then switching gears to a new topic area, which I'm about 94, but not quite 95% sure will be focused on the engagement of children, youth and families. Most of the engagement work that I personally do is with older adults and adults, and I think it'll be really interesting to dive in deep and explore the special considerations related to engaging younger people and their families, as well as the cool methods used to do so, and some of the innovative studies that we have across Canada that can help tie it all together. So if that sounds like some of the work you're doing as a patient partner or academic researcher or organization or whatever, please email me at anna.asperusual@gmail.com, and I'd love to have you as next season's guest.
Okay, so with that, I'd like to welcome today's guests, which are Carrie Costello, Annette Majnemer and Gillian Backlin to the show to tell us all about the CHILD-BRIGHT Network. Hi, guys. I'm going to hand over the proverbial talking stick to you.
Please tell the a little bit about yourselves and who you are relative to the network.
Annette
So hi, I'm Annette Majnemer, I'm an occupational therapist and a professor at the School of Physical and Occupational Therapy at McGill University, and a senior scientist at the Research Institute of the McGill University Health Center. I have the distinct privilege of leading the CHILD-BRIGHT Network, which we'll speak about shortly. And my research focuses on children and youth with brain based developmental disabilities and their families, looking at early identification and novel interventions, as well as addressing gaps and rehabilitation and other health care services. Always using a patient oriented research approach.
Carrie
Hello, my name is Carrie Costello, and I started as one of a group of about seven patient advisors on a particular research project that was under the umbrella of the CHILD-BRIGHT Network. I have since sort of become a co-investigator on that particular project, as well as the parent liaison for the CHILD-BRIGHT Network. I am a parent myself. I have three kiddos. My kiddo with differences just turned 13 years old yesterday, so I now have a teenager, well, I have two teenagers in the house. And that's the reason I got involved in research as a parent partner. So my supporting my kiddo. I also work in implementation science and am a puppeteer as things to add to my resume and I'll pass it over to Gillian.
Gillian
Hi, I'm Gillian and I'm part of the child right network in the sense that I'm part of the National Youth Advocacy Council (NYAC) and collaborate on research projects. So researchers come to the NYAC and say, hey, we might need help on this project or this perspective. I'm a person with lived experience with a brain based disability, so I can offer some input there. Through CHILD-BRIGHT I'm also part of a few other committees and projects, including the Knowledge Mobilization Committee. I've been interested in mobilization and figuring out how we can take this information that we're gathering, and use it in a meaningful way.
Anna
That's awesome. Thanks again to all of you for coming on. I'm honestly so very happy that you're here. And a fun fact that I'd like to share is that Carrie and I both currently live in Winnipeg, and we've actually known each other for a handful of years now through the patient oriented work we've been doing, affiliated with the George and Fay Yee Center for Healthcare Innovation. So it's so exciting to get to cross paths with you again, Carrie.
So why don't we get the conversation going by having you guys provide an overview of what CHILD-BRIGHT is and how it came to be.
Annette
So I'll get started. And and my colleagues here will fill in. So we were fortunate to be one of the five chronic disease networks funded by the CIHR SPOR program or Strategy for Patient Oriented Research. Phase one of the network began in 2016, and we have been fortunate to be funded for phase two, which began in 2022. So what is CHILD-BRIGHT? What are we really focusing on? So our mission is to achieve brighter futures for children with brain based developmental disabilities and their families across the life course. And we are doing this by promoting healthier outcomes, focusing on research that is optimizing brain and child development, creating novel interventions and providing more responsive and supportive services. CHILD-BRIGHT is actually an acronym that stands for Child Health Initiatives Limiting Disability - Brain Research Improving Growth and Health Trajectories. So it's a mouthful, but CHILD-BRIGHT is much easier to say. So our research really focuses on three themes. And these themes were developed in partnership with parents and youth with lived experience in terms of what they felt was most important to focus on at this point in time.
Theme 1: Projects relating to brain and child development to optimize developmental outcomes.
Theme 2: Projects relating to integrating mental health support into care. So this is the mental health of children and families.
Theme 3: Projects looking at how best to redesign health care services to be more responsive to families’ needs.
So in phase one we had 13 very innovative research projects. Many of them were trials that were being conducted across different parts of Canada and many used different technologies. So things like online coaching interventions, gaming technologies, apps, brain stimulation. So these are very innovative, exciting projects that we're just in the process of completing.
And in phase two, we're shifting focus to more the implementation of the findings of the knowledge that we created, trying to accelerate the mobilization of that research into practice and policy. So to really accelerate the use of research, because we know that it can take sometimes decades for that research to actually have some kind of impact on practice or to inform decision making.
So we have:
the research program, which in phase two is now the implementation science research program.
the knowledge mobilization program, which has three hubs, looking at how to move knowledge to:
clinicians;
parents;
policy makers.
And so really looking at what are the best modalities and ways to ensure that knowledge is understandable, taken up, and used.
the training program, to build on much that we've learned, which we'll talk about shortly, on how to do patient oriented research that is really authentic. And we are also training on some of the other areas like knowledge mobilization, implementation, equity, diversity, inclusion and Indigenous health.
the engagement program, so really overseeing all the patient engagement strategies that we're using. And we measure them. And really there's lots of effort to ensure that patient oriented research is well supported in our network.
the equity, diversity, inclusion, decolonization, and Indigenisation program, and ensuring that those concepts are integrated and embedded within the research that we do.
So that's like a quick overview on the main elements of what we're all about. And then we can dig deeper as we discuss further.
Anna
It definitely seems like you guys are quite the entity with lots of different arms. And something that I'm really interested in is systems and how they're developed and function.
Could you us better understand how patients and members of the public are embedded or involved within CHILD-BRIGHT?
Carrie
Absolutely. I can start us off and then I'll pass over to Gillian. And then Annette, you can fill in any of the things that Gillian and I aren't directly a part of. But for example, in my role as Parent Liaison, a lot of my role right now is connecting — connecting different committees, like the training and engagement legs with the steering committee, making sure projects are connecting to the right parents or youth for their projects. Really trying to make all those connections happen. So I am on the steering committee, I'm currently on the executive committee, and there's always a patient/parent representative on the executive committee, as well as several on the steering committee, there's both youth and parent partners. And then there's sort of the representation on all of the projects — every single project has patients on their projects as well. Gillian, do you want to follow up with your involvement?
Gillian
So I would just say that for me, being on the Youth Council, it's sort of like a hub for other projects to go to. So if a researcher or a team of researchers want some input on a project they're doing or like best practices or lived experience, to add to their research, then they would come to me, or one of the other youth that would better fit the study or the goal, and we would collaborate. So basically my role is to be there for potential collaborations through the consultation service that the Youth Council has. And then I get asked to be part of different projects like within CHILD-BRIGHT as well through that lens.
Annette
So just to emphasize Carrie's point, how parent and youth partners are really embedded in everything that we're doing. So every program has committees and working groups, and we have representation of people with lived experience in each of those committees and initiatives. Some co-lead the programs, and also all our research projects have several partners with lived experience. And The Youth Advocacy Council has been really instrumental and has grown so much over the years in terms of its diversity, its representation across Canada, we also have francophones as well as anglophones. So we're really trying to diversify the engagement that we have of different people with lived experience. And, you know, we started off with just a handful of people, perhaps five parents, that had some experience being part of research teams. And we've grown to now close to 100 people with lived experience as part of our network. We have about 60 parents over 20 youth. We have several young adults with disabilities, and we have 13 First Nation communities as partners. So we've come a long way. We continue to learn together, but we could not do the work we're doing in the way that we're doing it to have such an impact without our partners.
Anna
That's really impressive. Both the way you've managed to embed people with lived and living experience across all the platforms, as well as to continue to grow.
Could you share anything about that journey of growth and tips that you've picked up along the way, or considerations that really helped you?
Or any special lessons you have in terms of diversifying the group that's there. Because I know that's something that we all, as researchers, are beginning to understand more and more. We do have to start reaching out and meaningfully and purposefully trying to ensure that we're casting a wider net to help ensure that the patient partners that we work with are more diverse.
Carrie
I can start off with the work the Engagement Council did. And the Engagement Council is the parents or caregivers council, as opposed to the NYAC that Gillian was talking about. We actually worked with someone who helped us tap into specific social media groups that might not normally get these kinds of calls. Specifically because a lot of communities have specific sort of groups, and some of them were social media, some of them were WhatsApp, some are the like various places in which they would sort of create a community within their community. And so we were really trying to be very deliberate in where we put these calls, instead of sort of putting out a general call to the people who usually engage. And we ended up with a huge number of applications from people who had never worked in research before, which was wonderful. And now I would say our our engagement council comprises much more wide ranging, diverse experiences. Or some had worked in research as like data people, but not as, you know, a parent partner. And so sort of really thinking outside the box and being very deliberate about where we put our call, that has certainly worked for us. Gillian, did you have anything to add about NYAC and how that recruitment process has gone?
Gillian
I mean, speaking from my experience, I am the first person living in the West Coast to join the NYAC. A lot of the NYAC lives in the East. I know that they were trying when they recruited me to have a wider net. So now we have people all across Canada. It's just been something that we're really mindful of, to be as diverse as possible. Not only in a geographic sense, but also ability wise and experience wise as well.
Annette
I would say that we were thinking about equity, diversity, inclusion before it was actually put forward by CIHR as a requirement for the next phase. We were already collecting information like a profile of our membership about backgrounds. So we we knew that the partners that we had were mostly white, middle aged, moms. We were very specific in trying to recruit fathers, in expanding our recruitment of youth, individuals with different ethnic backgrounds, those in more rural settings, because most were in the big cities geographic representation. So we were much more deliberate in our efforts to recruit broadly. We have something that, for better or for worse, we call it the matching tool, which is not perfect, but it is an interesting way for people to express their interest in joining our network, where they tell us a little bit about themselves, what their particular interest or expertise might be, a little bit about their their lived experience, and we try to match people to different things that we're doing where they might have a good fit. So we are trying to also think about ways to include people in different aspects of the the network's activities. And as we recruit people there's efforts to onboard them, to give them some background, some training. And we have Carrie as our parent liaison, who is amazing, and she really helps to mentor new parents so that they have a good understanding about what CHILD-BRIGHT is about and different ways that they can work together with us.
Anna
Thanks so much for expanding on that. And you've actually touched upon two points that I wanted to explore further. One is around membership. So who can join the network? And then the other one is about the steps you take to ensure meaningful and active engagement across all the various activities. So why don't we start off with membership first?
Could you explain who can be a member of your network and what the benefit and perhaps expectations are?
Annette
Anyone can join. We encourage people to sign up to our newsletters. So you immediately become part of our community because you hear about what's going on and we're always asking for people to join different initiatives. So that's sort of the easiest way. Research projects, as they've evolved, have expanded their research teams to include different people — so they seek people out. Same thing with the different committees or working groups. We're seeking people with different lived experiences to help us. But really, just by joining the newsletter you automatically become, in a sense, a member. So it's a very open community. We are also trying to expand our focus outside the network to really take advantage of our expertise and our experiences to work with others that have common agendas with respect to children with disabilities or child health or child health research, so that we can support healthy outcomes for Canadian children, particularly with disabilities and their families.
And in terms of engagement, in terms of making sure it's meaningful — I mean, we have different training, and maybe Carrie and Gillian could speak about that a bit. But one way that we can really monitor our engagement is that we periodically measure engagement using different methods. So we have different standardized quantitative tools that measure engagement from the perspective of people with lived experience, and also from the perspective of the researchers. So understanding how that relationship is going, whether it's through a project or a program and seeing what's going well, where there are challenges. The second measure is more about trust and community building and really the partnership piece of it. So those measures give us a numerical sense of how we're doing over time. But then we followed up with interviews of individuals to get a deeper dive into understanding what's going well and where the challenges might be and potential solutions. So we're always looking to improve and to continue to learn about optimizing really authentic engagement of partners in the network.
Anna
Maybe before Carrie and Gillian jump in, I'll just quickly follow up because I know evaluations a hot topic for all of us. So were these measures that you used developed in-house, and if so, can people access them? Or are they maybe published instruments, or how does that work?
Annette
We didn't develop them. So these are standardized you know reliable valid tools. So there's
The Community Based Participatory Research Program. And there's the
Carrie
We did modify the PPEET a little bit for our population. We modified it like a different one for patient partners, parent partners, and researchers, but it's based on that.
Annette
So the items are the same, the categories are the same. But it was more worded for the partner or for the researcher. So the perspective, and including “CHILD-BRIGHT”, or “your project”, so they they understand how to apply the statement that's more specific to who's reading it and what they're doing. But that is a really very user friendly tool. And of course, everything was translated to French as well.
Anna
That's awesome. So we've got the two-tail end of things. First bringing people on and onboarding them. And then the end piece, which is the constant evaluation of the engagement. And could you help us understand the middle piece, then:
What is it that you do to help ensure active and meaningful engagement after people have been onboarded?
And I'm assuming that they understand more about the network and what their role is. Perhaps there's a terms of reference that's developed. So what are the middle pieces?
Carrie
I think because of how our network is positioned, that it's probably advantageous for us to focus on the youth because I'm assuming that a lot of your guests over this season have probably talked a lot about adult. And what's wonderful about CHILD-BRIGHT is there is the parent, but it's also the youth. And so I wonder if we want to take some time to just really focus on that engagement of youth. And do we want to start with sort of like that beginning section. How do you plan for it? How do you think about it? Gillian, did you want to start us off on that and then I can jump in after?
Gillian
Yeah. So I think the first part — the planning phase — has a lot to do with thinking about your intent when you when you want to engage patient partners or people with lived experience. What are you hoping to get out of that experience or from the research end, how do you want them to be involved? So to think about it in the sense that the focus is authenticity and making sure that it's not tokenistic. So making sure that each person has a part to play within the research or project. And that would be, I think, step one.
Carrie
I think that's a really great point, Gillian. You're not coming to check off that the youth said this was okay. You're coming to ask questions and hear answers. A few of the practical considerations I'll throw in there, Gillian, because from the other side, from other jobs I've worked at, and from my work at CHILD-BRIGHT in the engagement council is really things like:
Planning for payment: How are you going to pay things which I know can be super complicated in university environments and in different environments. Thinking about that beforehand and making sure you can pay people. Having it in the budget is sort of a basic, but then like actually making sure you can make it happen. And with youth, it's sort of like, are there any implications for the family if you pay a youth in a household? Sometimes that's considered part of household income, and is that going to be a problem for the family? Does the youth even have a SIN number? If they live and work in a First Nation, they don't need SIN numbers. Their income is reported differently. So making sure that you understand those really practical pieces before you walk through the door. And sometimes it takes a little advocacy, but I will say it can be done. Do the work beforehand, but it can be done, and it is done in universities across the country so it's not new.
Gillian
And one thing I would add to the logistical sort of payment piece is there's been a push in recent years to see lived experience as something of value and something that should be compensated for. So, years ago, maybe me sharing my experience wasn't something that was honoured in that way. But I think it's really important that we maintain that because for a lot of people, getting employment is difficult due to their lived experience. So acknowledging that and what they bring to the table super important. As well as things like if a Person with Disability Benefit is an issue to getting paid, there's all these different considerations that need to be made and talked about and thought about.
Carrie
Yeah, excellent points, Gillian. And the easiest thing is just ask because you can work around all of them, but you need to make sure that you've asked the questions to make sure you know.
When working with youth especially, do not put youth in the same room with adults as much as possible, and do not put youth in the same room as their parents or caregivers. Ever. If you want their true opinions. So really making sure you're planning ahead and splitting people up when you're actually asking questions where you want their input. Because a lot of times people are like, “bring the whole family!” and that's great, but then you need to split them up. If you're going to bring the whole family, split them up. With teenagers. Now I've worked with children as young as five, and when you're talking about a 5 to 10 year old, that's really probably not the case. Then their parents are there more as a support person.
And paying children is sort of even more complicated. Do they even have a SIN number? Who knows? Is payment meaningful for them at age five? Probably not. So then you're thinking about like, am I paying the parent for bringing them there, and then giving the child something that is meaningful to them? Like, is it a Toys R Us gift card? I don't know, whatever it is, but sort of really thinking through those questions beforehand and maybe even engaging other people to talk about that. So coming to other organizations that are doing it or coming to the NYAC to talk about, “this is how I want to pay people, does that sound right to you?” So really, even in those really early stages, making sure you're talking to people as you're planning these pieces.
Anna
I'm so glad too that you brought up the fact that it's not enough to just start thinking about it and talking about it, but to also reach out to your finance department and find out what their process is. And something that I'm painfully learning is you have to reach out every single time because processes change behind the scenes, classifications change behind the scenes. And I know that's something that's very damaging to relationships, if you tell people you're going to compensate them, and then there's very long delays before you're able to do so. So I'm really glad you brought that up as well.
Carrie
And I'll jump in there and say, I've been able to get cash advances, e-transfer people, and then like put up all of the receipts. It's a little bit more administrative because you have to put up all the different confirmations and things like this so that I can make sure people get paid. As opposed to like sort of, yes, after the fact, putting in for a cheque and putting in for that. Now, I know not every organization can make that work, but it can work and there are different ways to set it up. If you don't know how, reach out. Because if other finance departments at large institutions have done it- for us, it was a wording thing. How do we word it? If we word it this way, they're considered a consultant, if we word it this way, then we can pay them without them having to have liability insurance and all these other things. So sometimes it's really simple wording, things that fix the problem, sometimes not.
Anna
Does your organization have any compensation guidelines that people could pull from your website that could really help them in thinking about this?
And if so, where did they find them?
Carrie
The simple answer is yes, we have compensation guidelines. So CHILD-BRIGHT, the way they've worked it out is they do is every six months they compensate for the previous six months. Which I would say is not the best practice, if you can not do that, if you can pay people after their work, that is what most youth- I don’t know, Gillian, how you feel, what most youth prefer. In some cases that's not possible just because of the different pieces that a lot of people are doing in CHILD-BRIGHT. That's the way the compensation is set up. But it's super clear there's a “this is the the work, this is what we're paying”. And then here's sort of some guidance in terms of hourly wages in terms of if you're presenting. So the compensation guidelines are available in our website. And it's really super useful in terms of a guideline of at least how much to pay. The when to pay is a little more complicated. Gillian, how do you feel about that?
Gillian
Yeah, I mean, I will say that our compensation setup isn't perfect. Exactly, as you said, the six month period- getting paid that way. But like, again, at least there's thought being put into it and the knowledge that, okay, this isn't perfect, but we're working with this right now and we'll do our best to keep going with that and make changes as need be. I think we just reviewed the compensation guidelines as well and made some updates to that. So it's an ongoing process for sure.
Anna
Awesome. And I see you guys have pasted the guidelines into our chat. So for anybody who's like me and wants things instantaneously, just Google CHILD-BRIGHT compensation guidelines and it'll pop up. And if not, visit our website and we'll have this at the front end of our resources section as well. So then I have one more question about planning meetings. And then I'm hoping we can move into some tips for ensuring that meetings start well.
Is there a sweet spot for a meeting duration when you are going to be engaging with youth?
Intuitively, I assume it might be a little shorter. I love two hour long meetings, but I don't know — what's the answer?
Gillian
I can jump in there and give my two cents. I think it depends on the individual, truly. I think part of that is just talking with the youth initially and seeing what they're comfortable with. One thing that does come up a lot is just more flexibility within schedules because, you know, job, school, all that kind of thing. Time zones even is a big one for me. Being on the West Coast, it's a lot earlier than most people in CHILD-BRIGHT. So having to compensate for that. Just talking to the youth and making sure that you're all on the same page in regards to what's expected. I would say one thing would be just to have it very clearly laid out, which is something we'll get into with the next point.
Annette
I guess something that relates to this discussion is I remember when we first started, very naively, and learning how to do this, it was part of a research project which Carrie and I were both on. And we started off with about 20 researchers and two parents and had a meeting on, I think it was even by telephone, not even by Zoom. So that made it even harder to engage. And it was extremely intimidating for the parent partners to speak up. The language we were using was very academic, methodologic. We were speaking about things that were not something they understood. And we tried to encourage them to speak about different things, but it was really not a great setup.
So what we learned from that is to have a separate parent advisory panel for the project, and to include many more parents because it was a parent research project. So parents were really the right partners to consider. So we had partners from across the country. We had maybe 7 or 8 parents at any single time, knowing that some will have to take a step back at different times because of either being very busy, or there might be something going on within the family that they needed to attend to. So allowing that flexibility, not putting pressure that they have to be at every meeting. So having more people, having them be the majority in the discussion where we bring something to them as we're moving forward in the research cycle. Getting their input on every piece, but they're discussing it among themselves, and there is a liaison back to the researcher team. And that seemed to work much better. And also it was less structured, I think, like in terms of agendas and minutes and things like that, which created an environment that was more conducive to sharing of ideas.
Anna
I think a very important piece that I'm sure you guys have considered within that, but people may not be as aware if they’re new to engagement is:
How do you ensure that the decision making carries over so that your patient and public panel discusses things, makes suggestions, and what's being suggested meaningfully drives the research?
Carrie
I could start us off here. What worked for our project and for many other projects is that there is a staff member or someone who's really good at engagement, who is facilitating, who is the contact. And that's often not the researcher, but one of the researchers is there as well, more as an observational role, sometimes presenting a little bit or answering questions specifically about the research. But having whoever that person is who's really good at engagement, like you need to have someone who actually it's part of their job. Hopefully they're good at it and they're interested in reaching out and engaging with this group. And you want to have more of the youth or more of the parents than there are researchers. But you do want that research leadership to make sure that they are there and hearing so that there’s sort of two people reporting back to the research team going, here's our direction.
Annette
So what I really want to emphasize is it's reciprocity. It's two pieces of a puzzle working together. It's not, “we’ll, listen to what you have to say and then do what we want”. It's really a partnership. And the way to show the value of that input is to then report back to the parents to youth, whether that's appropriate, how that information was integrated. And if there is something specific that could not be integrated, to explain why. Like sometimes, let's say in a trial where we have people who are not in the intervention group because they're randomized to either getting the treatment or not, or being the controls. And sometimes we lose controls because they're not getting the treatment, so they're no longer interested. So sometimes a parent will say, well “why don't we just switch them to the intervention?” So explaining the whole process of why randomization occurs and why it's important to adhere to that. So knowing if you cannot integrate a suggestion, it's important to communicate the reasons why and to reinforce the value of all the input that is provided. That it comes back to the to the group in terms of really showing the benefit of that input to the quality and the impact of the study.
Anna
And I'm really glad you highlighted both that reciprocity piece, as well as the fact that you do have to value lived/living experience, because that's what helps ensure that it's just not a tokenistic exercise. And having that person in leadership, or who really helps drive the overall research directions being part of both groups so that they can go back and forth and really champion for that value that is the lived/living experience. So then let's keep on moving in.
What can you do to help ensure that meetings get off to a great start?
Gillian
I can start. So I would say the one thing that we kind of touched on already is making sure, it's at a good time for everyone. That would be number one. And then number two is making sure that if the youth needs accommodation of any kind, that that is not only provided, but I think it's really important that the researcher, the person coming to the youth starts that conversation. Because
a lot of times, people with lived experience are expected to advocate for themselves in every aspect. I think it's important that the responsibility is shared for it to be a place where they can meaningfully engage
and not just on the person with that lived experience. So, for example, say something like, “if you need accommodations, we can offer you this, this or that. And if those things don't work for you, just let us know” and kind of have the open dialogue first. I think it's really important because you don't know what to ask for. So I think it's really important to be mindful of those things to start off. And then just obviously making sure that it's a safe and comfortable environment, make sure that the youth knows that they can answer or not answer questions as they see fit, things like that, and just go from there. So it's really, really based on communication I would say.
Carrie
I really want to highlight that, like, “these are some accommodations I've thought of. But if you need something else…” because I think you're right, Gillian, that a lot of people don't think about that. They don't think, they just say, “do you have any accommodations that you need?” And that's it. That's the end of the thought. And I think going that one step further or, “these are some of the things we've thought about”. And if I do that, people will go actually this step that you said this, sending things five days beforehand has become really important for me, and they probably wouldn't have thought about it if I just said, a general “do you need any accommodations?” But because Gillian is sort of like honed in and said you need to offer some things, and that makes me comfortable to say this is what I need, and it actually helps the engagement. So thank you for that tip, Gillian, that you gave me early on when I started engaging with you.
A couple things to build on that is start off with a question everybody can answer. And what I'll say is often as researchers, we can walk in with judgment built in. And I'll give an example. So it was a student project. They came to a youth council I was working with and they said, this is my interview guide. And every single youth went, I can't answer a single one of these questions. Because the researcher had come in with the assumption that the youth had already started thinking about the transition process, and none of them had, not a single one. So if that researcher had not come to this youth group with their interview guide before and just started doing the interviews, the interviews would have been 10 seconds long because the youth would not have been able to answer the questions. And it was a simple fix because it hadn't gone into ethics yet. Simple fix to go like, the first question is, “have you started to think about transitioning?” And then you can, reframe all of the questions as “how would you want to” if you haven't thought about it, or “how have you” or “how did you” or whatever. Like simple thing, but it only was simple because that interview guide had not gone into ethics yet. If it had gone into ethics, that would not have been a simple change, right?
So really making sure that you're not walking in with judgment and thinking about what is a question that every person can answer. Really making sure that you're not looking for consensus, that you're looking for discussion. So there's no right or wrong answers. It is okay to disagree with other people around the table, because what you're looking for is information and different perspectives. So I find that like really starting off and reminding them of that fairly often during different meetings really opens people up to go, “I hear what you're saying, and I think this as well, or and can I add to that”. So it really opens up the discussion a bit and how to balance the power dynamics. Because as a researcher, you are walking in with power, even if you are trying not to, or a doctor or a clinician or whatever. Like you have a certain amount of power and that's okay. But there's some good ways to balance that. Gillian, I don't know if you want to jump in here.
Gillian
Yeah. So I think for me, one of the things would just be the word “patient.” We use it a lot within our sphere and it's widely accepted. But it also comes with its own power dynamic that people need to be aware of. So when you talk to me, you don't want to talk to me as a patient, but as someone on the same level. So someone with the lived experience that you're trying to gather information from. And people might say, oh, it's just a word that we use, it encompasses. But no, it really does create a power dynamic that we need to be aware of. And just for it to be known that just because you might not have the research background or the academic background, that experience in itself is of value. And if you weren't there to provide that, the researcher couldn't move further in their work. So having that also be acknowledged, I think is super important. Because when I was starting out, I was like twenty something, I didn't know what I had to offer. I don't have a degree, but at the end of the day that isn't the point. So just having that really honest conversation of this is what we're here for and this is what you can bring to the table. It's really important.
Carrie
Yeah, absolutely Gillian. And like "I want to learn from you” is a very powerful statement. And some of them are really simple things like are you okay with just everybody using your first name? Because if you are, that's a super more accessible way to introduce yourself. “Hi, I'm Carrie” not I mean, I don't have a doctorate, but for example like we call Annette “Annette”, we don't call her Dr. Majnemer. It's just an easy way to try and rebalance that power a little bit. And just being really aware of it and trying to mitigate it as much as you can is how you'll get people more comfortable talking to you.
And what Annette said earlier is like, you don't have to implement everything that is said. We’re like everybody- researchers have good and bad ideas, so do patient partners. Like we not all of our ideas are brilliant and good. But if you can't, or if you've thought about it and need to come back and say, “I couldn't do it”, then come back with a “why” or come back to find more information. Really get into like, why are you asking that? Or why are you wanting that? Because sometimes you can fix the underlying problem, but the solution that they've offered is not something you can do. So really asking more questions and really coming back and going, okay, we couldn't do this part. But like let's try and figure out what the actual problem is. And sometimes you can, sometimes you can't. But it's really respecting those relationships as equals.
Annette
So the researcher is really asking and listening rather than directing and telling. So the perspective is really important. And one thing I also want to emphasize is that this is hard to do for partners with lived experience, and it's hard to do for researchers. Training is important on both sides. Learning is important on both sides. It's something that's a shared experience. It's a fairly novel approach for all involved. So for example, for researchers, in terms of the perspective of a researcher, it takes much more time to do patient oriented research than just doing it the way we traditionally do it. You really have to slow down the process. If you're really going to take time to have those conversations back and forth, to listen, to reflect, to see what can be adjusted and really think about ways to take advantage of that lived experience to really optimize the project. So we have to build that time into the timeline of the research itself, which is something we've learned is critical.
It's also understanding how intimidating it is to work with a bunch of researchers doing their thing. And so this idea of the advisory panels and finding ways to make sure everyone feels, as Gillian says, safe and comfortable, like really paying attention to those cues and making sure. And if you have doubts about it to ask in a non-threatening way, how can we make it more comfortable? How can we ensure you feel like you're listened to and you feel this is worthwhile for you? You know, we have various training opportunities. Training is important, but I think it's just actually doing it, making mistakes, learning from each other, you know, I think is really, really helpful. There needs to be flexibility built in. And that's why having more partners with lived experiences helpful so that you don't put too much pressure on any one person. And then the other thing we had mentioned before is making sure you have not only people that you're comfortable with, people that maybe are doing a PhD in your field, but really having a diverse and representative group of partners with lived experience, to be sure you're getting different perspectives that will be meaningful to the research project.
Carrie
So one thing that I've learned from working with youth, especially if you're even if you're in an hour long, but especially if you're in sort of a two hour long meeting, is making sure that you have different ways for the young people to engage. So some people are really good about coming off mute and talking, but some people are not. And so giving information, asking a question, and having them think about it and write two sentences in the chat, or having like a post-it note activity where you're like sort of putting post-it notes and things like that are all super great ways to make sure that people who engage in different ways, and make sure that those people who are a little bit quieter who might not feel comfortable coming off mute. The other thing I often set up in my meeting and, Gillian, I don't know if you agree with this, but I often set up a round table for a couple of questions, especially for virtual meetings, I will go around and make sure that everyone has a chance to speak. And if you don't want to answer the question or you just want to say pass, that's totally fine. But I just want to make sure that everyone has the opportunity because, especially on zoom, it's sort of hard to jump in or you don't know if what you have to say is that important. And so sort of making sure to give those space. So those are some way different ways to break up the meeting a little bit and also just make sure everybody has a say.
Gillian
I would agree with those. And I think your approach in that you don't have to answer, but I'm giving you an opportunity is a great thing. Sometimes I find with those icebreaker activities, if they're sort of mandatory, it can do the opposite effect and make you less comfortable in a scenario. At least that's my experience. I'm not necessarily shy, but I'm not the most outgoing at first either. So it takes me a bit to warm up, and I kind of have to do it at my own pace. And yeah, just making sure that everyone has the opportunity. I know for me, typing in the chat isn't the easiest thing, so having the opportunity to speak verbally is what normally works best for me. What I will say though, one thing that has helped me in the past is if I'm not confident in answering a question, I might privately message the host and say like, I have this question. Then it doesn't go to the whole group, so I don't feel as put on the spot. But that's another option to have set up in Zoom, to be able to do that helps as well.
Carrie
Absolutely. And just a follow up, sort of we're moving into the end-of-meeting stuff. But one of the things, Gillian, that just happened to me recently when we were working on a project is that somebody wrote down all the questions during, but they were at home with their kids and didn't have time and didn't want to come off mute because of the noise behind their house. And so they literally wrote us an email with all of the questions. And then when they had time after the kids were in bed, they wrote out all their answers and sent them to us. And I was like, “oh, we probably should have thought of that as an option to be offered before.” And I think, Gillian, what you were saying about being able to private message, being able to reach out and ask questions and things like that is a super important thing to to make sure there's space for.
I always start off all my meetings by saying, I'm still learning. So if I say something that makes you go “ooof”, I want to know. If you're comfortable, you can come off mute and tell me, or you can like email Annette and Annette will make sure that I get that information without knowing who it came from. So ways that they can give feedback on how you're engaging is important to offer, and hopefully offer that at the beginning and then again at the end. And reaching out for that feedback often, and just going, if you have anything, I want to know it, and I want to learn, and then implementing whatever they said, which is sometimes the hardest part. You know, what are the different words that you can use, “folks”, instead of ladies and gentlemen or whatever. What are those different words that you can become a little bit better at being a little bit more inclusive? And what are the words that this particular group wants you to use?
Gillian
I think it's important to remember that most people aren't going to get it 100% all of the time. But just the conversation, okay, what what is preferred, what works best, and then just doing your best to implement it. I think it's the most important thing. And just having the opportunity to come back and say, “oh, this is something I wanted to add” has been really helpful for me, especially because a lot of my meetings end up being early in the morning and I'm not a morning person. So having the chance to digest what has been said and then think about it and then get back has been really helpful.
Carrie
That's a great point. Like a little follow up email saying is there anything else you wanted to add now that we've sort of closed? Thank you again, Gillian, another thing I can add to my list of things to make sure I'm doing. A couple other things, I always book time after a meeting to self evaluate:
How did that meeting go?
What worked? What didn't?
What went well?
What did this particular group glom onto?
What did they want to talk about and what didn't they?
Which I think is something that we often miss because we're going from meeting to meeting to meeting. But actually book that into your day that after that meeting right away, make some notes for yourself. How did that meeting with that particular group of youth go? And then you can sort of build that into the next time you're bringing that group together, you can really think about those things and you have your notes to refer back to. But you’ve got to do it pretty quick afterwards, like within the same day otherwise it’s gone.
Anna
It’s like studying, right? Refer to your notes right after your class, and then it'll stick in your mind a lot better than if you don't. I think that kind of brings us into the tail end. So we've got some great tips for planning your meeting, how to start it off right and make sure that momentum is going. And then what about when the meeting ends? So you've suggested:
That the person leading the meeting take some notes about what worked or didn't.
Providing people with the opportunity to provide feedback.
Providing people with the opportunity to answer questions which were posed during the meeting after it as well.
We also heard about the importance of communicating even when there's lulls in the research activities.
Are there any other tips for things to really consider as follow-ups to the meetings, or in the period between meetings?
Gillian
For me, I've been part of several research projects and different things, and one of the things that bothers me the most is like, “here's your $25 honorarium” and I never hear about the study or anything that was done post. So that's where the engagement becomes less meaningful, because right there I was just a check mark in a check box to say, “oh, we had this person involved”. But I don't feel like I was actually a part of the whole thing if I don't get to see the results. And on the other side of that, is just to send me an email explaining what my part was and if there was any sort of publication for me to be able to add that on to my resume is super helpful. Just to have that record to go back to is always, nice.
Carrie
I think all of that's super important, Gillian. And for me, even if nothing is happening right now in the project, because I know sometimes recruitment is happening and that could take a year, sending an email once in a while saying, “hey, nothing, you need to do. We have this many people recruited. We're still working on that.” And that's it. Like once a month, once every two months, but that regular reach out to just let people know. Because in my parent liaison role I talked to a lot of parents who were like, “I'm not sure if I'm supposed to be doing anything right now because I haven't heard from the project in awhile.” And they're like, “I don't know, did I get dropped off the emails?” And it's just that they're in recruitment and that is a year long process. And other than like here, if you want to share these [recruitment materials] on Facebook, there's really not much for patient partners to do. But keeping up that relationship, as Gillian said, like coming back. And just even if the email is, “there's nothing for you to do”. It's important to just say that.
When patient partners are working on these things, this is not their priority. They've got their jobs, they've got their other things, they've got their health, they've got their kid’s health, whatever it is. And so really going, okay, they haven't heard from me in two months, “Reminder, this is the project, this is what we're working on, and this is an action item I need you to do, and this is the date I need you to do it by.” Really being super clear in all of those communications so that there's not a confusion. Keeping that contact going, even when there's nothing to do is something I hear a lot about.
Gillian
One thing I would add to that is I found it helpful, even if there's nothing going on, to meet with the person on zoom and just say, okay, this is where we are at right now. And really having that face-to-face interaction really helps me kind of refresh my memory on what what I need to do and what's happening for me. On the the youth panel, there is an Engagement Coordinator. And she's offered to be part of meetings with me and check-ins and different things like that. Just so that I have that other person to help navigate that and also refresh my memory a lot of the time in terms of, okay, this is what's happening right now, and then it's not all on me to kind of to navigate on my own, which has been super helpful.
Anna
And I'm glad you brought that up too, that importance, that there are people who will say, you know what, just email me once every like month or two months. So I know I'm still part of the project and that's sufficient. I don't want to meet unless there's something to meet about. And there's other people who would love to meet for the reminders, or even just for keeping the community feeling going. Because I know when you truly partner with people, you do feel that sense of belonging, that relationship, and that's important as well. So to really take those differences into consideration. And again, talk to your partners, develop that reciprocal exchange where you come to understand what works for every person, and what works for an individual doesn't have to work for the entire group. But it's your job as the liaison or the researcher who's in charge of the engagement endeavour to help ensure that you are meeting every partner's needs to the best of your abilities.
Carrie
I was just going to add — do plan every 1 to 2 years to check in with people on a more individual level rather than the group to see how things are going with them. Because in my current liaison role, the number of times that I've reached out to a parent and they say, “yeah, I don't really feel comfortable talking in this meeting”. Okay, let's unpack that. And then we can go back to the research team and say, can we balance this? And they absolutely can. And it's fixed for the next meeting. If it hadn't been for that reach out to say, “let's just talk about this and make sure it's working”, that change would have never happened. So just really thinking about that as part of your engagement plan, making sure that you are doing those, even if it's not each person all the time, even if mostly it's an email interaction, it's sort of like making sure that does become a priority at least once every two years or once a year, depending on the length of your project.
Gillian
One thing that I wanted to add to the feedback piece is I had an opportunity to speak and it was someone's patient-oriented research project, I think for their school. One thing that happened was, first of all, I was involved late in the project. So I got told that they wanted someone with lived experience to come on this talk, which was great, but it was like a week and a half prior. So I didn't really have a lot of time to prepare. Then the day the speech happened, a lot of the examples that were given in the speech were more based on parent partners and less on patient partners. So I didn't really feel like what I had to say quite fit in with the project. But, you know, we made it work. And I talked about parents being advocates, and what an advocate was, and what the difference is between a patient partner versus a parent partner. Things like that, and it all worked out great. On that day, I was asked, how do you think it's going? That kind of thing. And at the time, I didn't feel comfortable providing that feedback that maybe things have been done differently or there was a different structure that could have been made. But then after the fact, I was given the chance to provide feedback over email, which just seemed a lot more comfortable for me in that scenario. It all was great and all worked out fine, but just the two points of:
getting involved at the appropriate time and then;
being given the opportunity for feedback multiple times and in different ways.
I think it was a learning experience for me. Thinking like, “okay, that was really beneficial”, or “I didn't like how they did it this way, I would have preferred this.”
Anna
What you guys are saying has also made me think about my own research program and how I approach it. And maybe even having an anonymous open survey that you can keep ongoing about the project. Like a comment box, and just say, “please talk to me. If not, please talk to this other person related to the project that you are hopefully comfortable with who isn't me, so they can bring any feedback that you may have about the process to me that you may not be comfortable sharing with me directly, and then maybe if not, here's also this anonymous online comment box, if you will. So you can also provide your feedback there as well. So give people lots of different mechanisms. Because even if you're really, really close to someone, sometimes it is uncomfortable to really share what you truly feel about something. But I also like how Annette brought up the idea, and you are both also reinforcing it that we need to also start thinking about feedback in terms of how do we work better together. It's not pointing the blame. It's just figuring out how do we optimize our work process so that our project and our group can be the best that it can be.
This has been such a rich discussion and helped, I believe, the listener really learn all about what the CHILD-BRIGHT network is, and then to really hone in on practical applications, both for engaging youth and families in their work. I think what we've learned goes beyond that as well. So now as we wrap up, I know that we've talked a lot about these different key considerations,
What would you like people to walk away with in terms of the main takeaways that they can apply to their own research endeavours?
Annette
To really benefit from patient engagement in in research projects, the authenticity of that engagement is critical.
So having discussions and getting feedback about how you're doing.
Not being afraid to see where you are struggling.
Like, for example, in the research cycle, I think people have more ease in engaging partners with lived experience at the onset, in establishing the protocol and starting the project and thinking about recruitment strategies. But then as the project progresses with data collection, and then analysis, and writing papers, and presenting, they kind of lose ground a little bit and they struggle with how to engage.
Having reciprocity.
Really listening together, learning together, understanding ways to keep people engaged and to ensure that you're really benefiting from their unique lived experiences. That greatly enriches your project at every stage and is really worth the effort.
Carrie
I think my key takeaways are:
Share your passion.
Share why you're doing this project. Because if you get both parents and youth on board, they will often be your strongest advocates. And the way you can actually get it into practice quicker and more effectively than anything else. So come in with your passion, with your love for the project, and share that.
Listen
it's really hard as researchers to come in with that attitude of, I'm going to learn a whole lot, and some of it might not be comfortable. But again, you don't have to accept everything that is said;
Engagement is a relationship
So it's sort of like if a research colleague said, “hey, this thing, I don't know, let's talk about it”, you would talk about it and you would have a conversation. And then you would go away and think about it and come back. And really thinking about relationships with patient partners in the same way. Those are my key takeaways.
Gillian
I think for me, it starts with:
Thinking about the ways in which you want to engage, and also why?
Like what is the purpose of youth or a person with experience or a parent being here? Is it so you can check a box? Or is it to really to get their experience in their input? That would be number one. And then number two is just,
Thinking about how to create the most meaningful experience possible.
And that could be through the accommodations that you get. But it doesn’t have to be huge. It could just be adjusting the time that you meet, or the format in which you do so. That can make a huge, huge difference in the response you get. To Carrie’s point earlier, one thing would be making sure that you're separating youth and parents or whatever the case may be, if you're having both, just so that you can get authentic answers that aren't being swayed by anything else. And I think that's really important.
Anna
Thank you so much for these wise parting words. And to all three of you for coming on to the podcast today and talking about CHILD-BRIGHT and providing such applicable tips in general.
As we wrap, I'd like to take a moment to thank Bre Kelly and the George and Fay Yee Center for Healthcare Innovation for their help with editing this season's episodes. As well, Sasha Kullman for helping create the interactive transcripts, including our interactive tables of contents that she's figured out how to add to each transcript. I'd also like to thank all of you that have been faithfully tuning in. As I always say, this podcast is a labor of love that I do on top of my regular research program, and I really appreciate the positive feedback I've been receiving. And to all of you in general that have taken the time to like, subscribe and/or tune in. Please continue to check out our website asperusual.substack.com for resources from today's episode, as well as interactive transcripts from this and previous episodes. While you're there, please be sure to subscribe to our newsletter. Or you can also subscribe to the podcast itself wherever it is that you download your podcast episodes from. If you'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks again so much for tuning in. Thanks to our three guests that have made this such an awesome year-end episode. until next time, let's keep working together to make patient engagement in research the standard, or As PER Usual.