‍Narrator: Welcome to Simply Unbreakable with Kristy Dickinson and Brenda Agnew, a podcast from Chronically Simple. Simply Unbreakable is about telling stories, learning from each other and forging new ways to navigate the healthcare system together.

Kristy: Welcome to another episode of Simply Unbreakable, a podcast, brought to you by Chronically Simply. I am Kristy Dickinson, with my Co-host and good friend, Brenda Agnew and we are so excited to introduce our special guest today. 

Brenda: Thanks Kristy. So we have the pleasure of welcoming Rachel Martin. Rachel is a busy advocate whose son Luke, was born with a rare chromosome diagnosis, CP and Autism. 

She partners with CanChild as a Research Engagement Strategist, for their online group, Parents Partnering in Research. Rachel is currently also affiliated with mentorship support for students and caregivers involved with CanChild’s Family Engagement and Research course.

She has partnered as well in publications with the Team and is currently working on multiple projects. She has a deep interest in furthering Pediatric Disability Policy on a federal level. Rachel returned to university in the Fall of 2019, with an intended focus on Population Health. 

Welcome again, Rachel.

Rachel: So great to be here. Very excited to talk today.

Brenda: Absolutely. And, I mean, we love – I mean I’m more familiar – Kristy is becoming familiar now – but I’m obviously more familiar with, you know your work in these circles and a little bit about your, you know your private life. And you know we are friends on Facebook. And we, and we do run alongside, you know many mutual contacts. 

But I’m wondering if you can, you know – for everybody that doesn’t know who you are – aside from your bio – give us a little bit more about you.

Rachel: Oh, for sure. So, I’m out in Calgary. We’ve been here for about seven years. The reason we moved to Alberta was, we were kind of looking for, I would say a medical home to be quite honest. Part of it ended up being – I think my son was born at a time when – it’s kind of a transition in medicine, in its own right. 

So when it came to understanding what sort of goals that we wanted to create for him, because we really didn’t know how long he was going to be with us. So, we wanted a space where we could live, work, have fun and also keep him safe. And should the time come, as it did, that he would have a good death. And so, Calgary just hit everything on our checkboxes. And that is such a rare thing to happen, I think with families, a lot of the time.

And so, it’s been nice to know that my husband has found a career here. I am still trying to figure out what I want to be when I grow up.

Brenda: That’s alright.

Rachel: [Laughs]

Kristy: We all are.

Brenda: We all are.

Rachel: Absolutely. And when – and my time with my son has offered so much opportunity to connect with other families and just really try to put my own dent in the universe. I think – you know we always talk about, you know just big grand ideas of changing the world. I’m trying to just make one aspect my own and to make it beautiful. That’s my overall kind of, I guess, short version of life – that’s the Reader’s Digest version.

Brenda: And I think that’s perfect, you know as you’re talking. I mean, I think we all – I don’t want to speak for everybody – but I believe that when you step into that role of a parent that has, you know a chronic illness or a childhood disability, I do think that we encounter – I mean you encountered it very early on recognizing the gaps that were available in the healthcare system and needing to actually move to fill those gaps.

But I think we identified quite quickly, where there are gaps, where are the barriers? And I think we initially set out to try to change the world. And then we become quickly exhausted. And it’s taken me a long time to realize the same thing, that if I can just make a dent. And, you know and I feel like now, I’ve done a couple of things I’m proud of. You know you’ve done some great things I know you’re proud of and I think that’s all we can do.

And I look at it now, like there’s so many of us. If everybody just does a little bit about what’s passionate to them, instead of trying to fix everything which is not possible, I think that’s the best way. And I know for you, two of the big pieces have been – well, I mean we all come under that research umbrella. But you’ve definitely tried to work really hard to increase that family engagement piece, with families in research and then bring together that patient partnership with researchers.

And I love that, because I think a lot of people are scared of research and they might tend to go the other way, where they’re like, “I’m going to fix the school system. I’m going to fix…” but research is where a lot of these things start.

And we know that without the numbers and the data that we, often times can’t even get things to move at the levels we want to without the research to back it up. So, I love that that’s your passion and that’s where, you know you’re looking to really make some changes.

Rachel: Well thank you, I appreciate that. And, you know one thing that I think gets missed in the conversation a lot – in regards to partnerships with families, or self-advocates and things like that – is the idea that this connection that we can have with the academic community, essentially is democratizing our own health information that we can bring choice to what is understood about our lives. We can help provide direction. We can help mobilize others, to share the relevant information that gets developed. 

And when we can do that in more efficient ways, we have, we have something really amazing going. Because right now as things stand, the average span roughly between publishing a study to implementation, is about 17 years, which is just like –

Brenda: Yeah. [Laughs] Yeah.

Rachel: Ugh. That’s all I have right now. Ugh. But yeah. Mm-hmm.

Brenda: Yeah, it’s a good – I mean that’s a good analogy. And, you know I’ve been involved in research in a few different ways. (1) You know having McLean directly, you know involved with it. And then I’ve sat on the other side of it, where I’ve tried to help sort of the research priorities. 

And, you know I remember when I first started having conversations with researchers, and I couldn’t understand the process. And I remember saying, “OK. I get it. But can we just get that drug and can we just – I’ll sign whatever I have to sign, if you could just give it to me and off we go.”

And it took me a long time to understand why it took so long. I don’t think it always has to take that long – as you’ve spent – but it took some time for me to understand. And I think what that gave me, was a little more patience and appreciation, I think, for the research process.

But having said that, as I became more involved in one of the studies I was involved with – was the Metformin – which, I think you’re familiar with – and where we really got caught up was in the RAE process – in the Research and Ethics. 

What was amazing, is that they were coming back with all of these items saying, “Well parents won’t want this. And parents – this will be a deterrent. Parents won’t like this. And parents…” And we were like, “Nobody asked us what – so let us, let us clarify that for you.” 

And, I think, had we been involved earlier, in a more impactful way, to shape some of that, we probably could have shaved off a year, at least, because that’s –

Rachel: Wow.

Brenda: Yeah. That’s how long it took to hold that. So, it’s a complicated long process that doesn’t always have to be that way. And I think that’s where people start to get really discouraged about even being involved with research.

Kristy: I have, I have two questions for Rachel, in listening to both of you guys talk. That stat about 17 years, is that mainly in the rare space? Or is that just overall in the whole world?

Rachel: That’s generally an average – on average. So, not so much about the process itself – that being part of the time gap – it’s more like your study is done. It’s in the books. It’s published. But to see it realized, rolled out –

Kristy: Yes.

Rachel: – into whatever –

Kristy: Access to treatment.

Rachel: Yeah.

Kristy: Or anything.

Rachel: Policy, treatment, yeah, things like that.

Kristy: Yeah, yeah, yeah.

Rachel: So, there have been people who have looked to – for lack of a better phrase, it’s – this sounds unethical but it really isn’t [Laughs] – cut corners, in terms of getting that information out and in terms of dissemination. 

Like, there’s a lovely lady by the name of Dr. Christine Chambers, that basically went to a mom blogger and she said, “We’re going to create some click [data] articles and really just talk it out over Twitter and Facebook and have parties for moms,” and this is all in regards to children’s pain, and to help alleviate a lot of the worries the parents have.

And the metrics by comparison, in terms of reach, where it was, you know going to Academic Conferences – you know the usual thing that we do – to the social media presence, was significant by comparison, in terms of how one could do that.

So, how we begin to change the culture, I think is honestly how is getting more people involved and creating the larger community. I think – and as you mentioned Kristy, Rare Disease community, I think that we could do amazing things, should we bring that to the culture that we have in Canada right now.

They’re doing – they’re starting to do that in significant ways in the US, but I think that we have not caught up by comparison, at all.

Kristy: I totally agree.

Brenda: I was just going to say – and you know me, I go off on tangents – but you know as you were talking, I mean there’s a – so I agree with you. I think we – you know I look at the group that, you know I’m a part of on Facebook. I’m a part of a lot of groups, I’m part of Rachel’s group. 

But one of the groups that I also moderate, you know we have about 2400 members. And I remember when we first started, it was like, “Oh, that’s nice. That’s [Laughs] nice, that’s nice you have this little group.”

And then it got to the point we were being contacted by researchers to say, “We are having a hard time trying to get parents into our study – to try to get participants in our study. Can you start sharing this?”

And once we started to share it in a genuine way, where people could discuss the research opportunity, what the impact was, all that kind of thing, I mean to your point, they started to see that engagement go up. And they started to see more and more people be interested and their reach was bigger, because they just weren’t – it’s, you know when you go into a Treatment Centre, you know your hope – I mean you post a flyer up there. Your chances of someone seeing that flyer is, [Laughs] I mean –

Kristy: Well today, it’s zero [Crosstalk].

Brenda: Right, today it’s zero, exactly. But prior to that, it wasn’t much better, to be honest with you. And so, you know they would say, “Well, we communicated this though, to all of our groups and our partners, and we don’t know why it’s not getting traction?” We’re like, “Well did you get it directly to the people that you want to reach?”

So, you know, that’s a really – it’s a really important point. I do think we have a long way to go. And I do think the US is doing it better. But, you know it’s been nice to see a little bit of the shift, even from the time that I got involved with research and how we start to see – you never – when we went to Conferences ten years ago, you never saw a parent up there alongside a researcher.

Rachel: Oh by far, no. And the thing is, I think like, I’ve only honestly been at this for about six years-ish. And my first Conference, I mean I remember being this like wide-eyed mom thinking, “I do not belong here.” And some very nice researcher from UBC asked me a perfectly normal human person question. And my first thought was to panic. And if I was wearing a hooded sweatshirt, I would have put that hood over my head. “I don’t know. I’m just a mom.” But that was immediately where I went.

And that really, I think, speaks to the prematurity of how young this idea is. We didn’t really start doing a real patient-oriented lens, till about, I believe it’s 2010.

Brenda: Wow.

Rachel: Yeah. So this is still a very new process in Canada specifically, but.

Brenda: Yeah, yeah.

Rachel: Yeah.

Kristy: Would you be open to sharing a little bit about your story and how you – what brought you into your advocacy work and then maybe expanding, just for our listeners who don’t know what patient led – or sorry – patient-oriented research is?

Rachel: Oh for sure. So my son was born with something called Mosaic Trisomy 22. So your 22nd chromosome is one attributed to growth. And so, if you’ve heard of Trisomy before, essentially it’s the same idea as Down syndrome. Down syndrome is on your 21st chromosome, however. So, it’s a third copy of your 22nd, which is what he had. 

And so it has a variety of ways upon which kind of creating a whole bunch of health-related variables. In the Rare Disease field, it’s really hard to find people who you are even remotely connected with. I have the luxury of knowing someone who’s son was born literally five days after mine and the story is – 

Brenda: Wow.

Rachel: – entirely different. A little bit look – same look in the face – different experience entirely. So, when it came to joining in, into research, this was actually through Facebook from a friend and kind of on a dare. You – we had many groups all the time on social media. And she’s like, “Hey, do you want to do this?” It’s like, “Yeah. Sure. Whatever.” Didn’t realize that this was going to jump into something a whole lot larger.

This was at a time where the idea of social media engagement of families was still very new and it took a lot for us to prove ourselves. And then a pandemic happened. And you’re kind of like, “Yeah. We’re all here now.” [Laughs]

Brenda: Yeah.

Rachel: From there, I gained a lot of connections with other researchers, who also had a mutual interest in being a part of this group, Parents Partnering in Research. And if anyone has an interest in joining this group as well too, it’s – you can find more information at CanChild.ca. 

But basically what had happened was I had gotten an invitation in the email – in my email – that had said, “Urgent. UN…” something about the United Nations. I can’t remember. But I remember freaking the heck out, thinking I was being called up to the Avengers or something to that effect.

Brenda: [Laughs] It’s almost the same, yeah.

Rachel: Oh, pretty close, yeah. [Laughs] A lot of government things tend to be. It’s more of a hurry up and wait situation. So when you move, you move really fast. I have never gotten my childcare arranged, passport, all of this stuff, within a matter of days essentially. And I was so blessed to kind of have family who were ready to mobilize, because they knew that this was a super weird, once in a lifetime thing.

And so I went to the Conference in the States Parties at the United Nations in New York and I got to meet up with the Canadian Federal Delegation as well too, to talk about Childhood Disability Policy. And from there, found out I was actually really good at talking about Children’s Rights, from a disability lens.

And kind of from there as well too, gained a lot of understanding that this is not a common conversation. Families know a lot about what they’re denied, when it comes to their kids.

Brenda: Mm-hmm.

Rachel: But it’s never been given a name. I ended up actually going to Geneva as well too, under the same – the same needs as well too – to appear before the UN Committee on the Convention on the Rights of Persons with Disabilities. And for there, I actually ended up doing an informal poll with like families of neurotypical, disabled and just said, “So, have you ever considered your child’s rights?” So I ended up talking to about 2000 families.

Brenda: Wow.

Rachel: I would say about like 80% of people was just a flat out, “No.” 

Brenda: Yeah.

Rachel: Never had that conversation in my brain. And so, the education part kind of began, to start talking about, “OK. Well, you know, you see all these things that happen at school, the things that you’re frustrated with, there’s a process here that we’ve been sourly lacking and we need to move forward.”

And so, yeah, basically that kind of has been an ongoing process to kind of start participating in and educating families and hopefully getting us in a place where disabled kids are recognized, which we kind of aren’t in Canada, but that’s a whole other TED Talk essentially. [Laughs]

Brenda: Yeah. Yeah. I mean people think that – people think that that’s not the case, but it is the case once you’ve lived it. That’s absolutely the case. Yeah.

Kristy: I think like so many things, not even just specific to healthcare, but we are – you don’t know what it’s like until you live it. And, I think, you know I know this from, you know our Board policies in education, my own experiences as a patient. You go into things with an assumption – so to your point – we would assume the Child’s Rights are a given. And are, you know there would be no gaps, until you get into it and you live it and you realize, “Oh, there’s, you know a Grand Canyon sized hole there.”

Rachel: Oh absolutely. And that’s the part where health overlaps, when it comes to things like Children’s Rights, is that all of these – a myriad of things called the social determinants of health – all play a role in how humanity is healthy. And a part of that ends up being a right to education, a right to clean water and all of these things come into it, but yeah.

Brenda: Well, and it’s funny too, Kristy you should mention it, because you know so when you spoke about the education system and you know that in my role as Trustee, I get involved with, you know reviewing policies and we take a look. 

And what I always find interesting – and I’m tying this into Rachel a bit – because when we develop a policy, I think everyone goes in with the intent, the assumptions, the right things for the right reasons. And what they do is they’ll say, “OK. Well, we’re going to make this policy and we are going to reference the Ontarian Human Rights Act. We’re going to reference the Constitution. We’re going to reference the Education Act, whatever that is.

And so, they’re not wrong. They reference those pieces when they develop policy and – but that’s when you start to realize that there’s certain things you can fix in the policy itself. You can make changes in the policy that are outside of – that are in addition to – or outside of those references. 

But for people who want to hold steadfast and challenge those policies, the issue then becomes the policies that were – the references that we’re following to make the policy.

So now you’re back to government. If you don’t have the right things, let’s say in the education for all – if you don’t have the right things in Education Act – if you don’t have the right things in some of those pieces, then that’s where it falls apart. Because it’s easy then to come back and say, “Well, we’ll just following the Education Act. And the Education Act is blah, blah, blah.”

And that’s where, you know, I know you have also an interest in policy. And I know it’s specific to health policy, but they all kind of work together. And that’s where, when you start to change things at that federal level – even provincially – but when you start to change things there, the hope is that eventually it rolls down to the point where us here, you know in, you know our little town, will be positively impacted by that.

And, I think, that’s where we start to fall into problems because there’s only so much you can honestly sometimes do at a local level. There’s only so much you can honestly do with policy creation in some of these organizations and institutions. It has to come a lot of times from the top down. Whether that be funding –

Kristy: So what –

Brenda: – and you know supports. Anyways, sorry Kristy, but that’s my –

Kristy: So what do they need then? So, I think this all ties back to what Rachel talked about in the very beginning – which is the research. And government needs data to change a policy. They’re not just going to change a policy because –

Brenda: And voices at the table.

Kristy: And voices at the table. 

Brenda: Right. Right.

Kristy: So to get those –

Brenda: Because – yeah.

Kristy: Well, to get those voices at the table, I think that’s, you know for what Rachel is doing and when I think about patient-oriented research, we go back to – Brenda you mentioned it and I’ve had my own experiences being part of research studies – where I’m a token. I’m needed for my voice.

Brenda: Yeah.

Kristy: They need to, they need the data from me, but it’s not two ways. 

Brenda: Right.

Kristy: I’ve participated in studies where I have no idea the outcome.

Brenda: No.

Kristy: Did I give, you know five years of my life to this study and did it impact anything? Or did it just fall away? So, you know I think for me anyway and what I’m so interested – and why I’m so interested in what you’re doing Rachel – is because there needs to be a true partnership and a true collaboration. And that equals two-way respect and understanding that we’re not just a data point.

Brenda: Mm-hmm.

Rachel: Absolutely. And that’s one thing that kind of stands out with this course that we teach. So this is through CanChild and Kids Brain Health Network. And what essentially they do is – it’s a little different than some of the other training, which is just kind of working into the processes of research, which is fair. 

But this is more focused on – not just the processes – but also the connection piece. So, for instance, there’s one validated skill called the Involvement Matrix, which is basically an opportunity to have a conversation about where your interests lie as a stakeholder and partner. And where you can start to kind of figure out who’s going to be doing what, through the process. We all come at these things from a very emotional space. 

Brenda: Mm-hmm.

Rachel: And everybody comes at joining in as a research partner, for a variety of reasons. For me, it was I don’t want families to have to repeat some of the nonsense that I had to do. But to jump into it, and if you remember the hoody example I gave before, I was nervous as heck.

And so, I had to kind of lay my heart out on the table and say like, “This is new to me. I may get very excited about stuff. I may feel a bit like a Chihuahua with – who is just kind of yipping about and stuff like that. So you need to kind of reign me in.” I mean these are all very human responses about someone who is going to essentially be a co-worker. 

Brenda: Absolutely.

Rachel: But you need that safe space to do that. And so that’s kind of where this came into play, was to have those conversations about the whys. But also from a very human lens, we have a really great class about ethics, for instance and why we do certain things that we do within research settings.

And you’re getting people who have never had a conversation about ethics in their lives, an opportunity to get to share an opinion that just bolsters somebody’s personality in the best way possible to kind of say that, “Oh, I didn’t even know I had an opinion on this but now I do. I may have – there may be something here.”

And then in the long run with that as well too. So what I end up doing is when somebody joins in on a research study and they’re super nervous about that, they can come talk to me. Or I am usually more than happy to sit in on a preliminary meeting with a researcher and just kind of ask questions and be just an emotional support.

Because people seem to need that. And when they get that deer in the headlights look, like, “This is too much for me,” I talk to the researcher and say, “Can you rein it in a little?”

Kristy: Mm-hmm.

Rachel: And then my relationship with that part is done. My matchmaking has fulfilled its destiny and a new project is born. Every so often, you get very human conversations about conflict, which does happen too. And all of these things –

Brenda: Absolutely.

Rachel: – kind of have, yeah, they have an opening to have really good conversation and ensure that these work out. Because you don’t want to burn those bridges, before they even have a chance to be successful really.

Kristy: Yeah. 

Brenda: Well and it’s interesting too when you talk about some of those tools to guide the families. Because you’re right. I mean we come into this – and we come from different personalities, right. I’ve [Laughs] always been a hit it over the head kind of personality, you know when I’ve entered a room. [Laughs]

And, you know I think I’ve said this before when I’ve been interviewed on things – but whenever someone would say to me, “Brenda, can you be a part of this? Can you speak to this? Can you be in this research?” I would say, “Are you sure [Laughs] you want me to come and do this? Because I may not say what you want me to say. Or I may not put…” you know.

But that – but, [Sighs] but I wouldn’t want to be a part of a study or a relationship that wasn’t anything but genuine. I think a lot of parents are – they want to get it out, but they don’t know how to get it out. And maybe what they’re going to say is not going to be complimentary, because it’s not going to be. Sometimes it’s going to be critical.

But how do you get that message across and still be respected and still be heard, but still be able to be your genuine self, in the way that you say it? And, I think, that’s where a lot of that coaching guidance, you know mentorship piece is important, just to help them, you know figure it out. “This is maybe how you want to say this. This is maybe how you want to…” because your message is – your message is only as effective as the way you deliver it.

Rachel: I’ve had some experiences within the research field that were awful. I mean, it’s kind of like dating. You kind of want to like get the best sort of start. You want to have the right sort of conversations. But sometimes it just doesn’t work. And you just want to swipe – I haven’t used a Dating App – so it’s, swipe that away.

Brenda: No. Yeah. [Laughs]

Rachel: [You’re never] anymore. 

Kristy: You’re going to swipe some way.

Rachel: My example has failed, but that’s OK. But in the end, and that’s kind of where that variety of voices kind of plays into this piece well too, is that you want the spicey jalapeno personalities. You want the opinionated ones. You want the quiet ones. 

You want to provide that opportunity, but it comes from investing in those people too. And that’s kind of where, for instance our Facebook group has worked out so well, is because you get, you get through the dating awkwardness, when you have kind of hung out in the same space for five years.

I think it’s a science that still requires some understanding, but I do think that this course really kind of helps alleviate a lot of those potential tensions in that, in that respect. Because in the end, you actually hang out with a researcher and you create a knowledge translation project as well. So you get, you get into it right away, which is lovely in that respect, but.

Kristy: Your dating analogy is now playing in my head too. But what I was going to say was it’s kind of – as you, as you both are speaking with the evolution of advocacy from where you started, to where you are now, I wonder if sometimes because we are talking about such personal situations that are – like there’s literally nothing more important in this world than your child – and as a parent, you will burn down any, you know village that it takes to get that child access to care and treatment that they need.

Similarly, you know for myself, advocating for my health, you come at it from such an emotionally charged place. So, I think when we look at things from a human lens, of how do you advocate or partner in research and then, you know take that emotion so that you’re advocating for your child? But then something I’ve learned from Brenda and watching her over the years – and Rachel I’m sure you are similar – is taking that one step above.

So, it’s not about my child or my health, it’s about – and you’ve touched on this in your intro which I loved – you know just that one step higher. So other families don’t have to go through what I went through, or other patients don’t have to go through what I went through. 

But I’m wondering if there’s – sometimes that communication breaks down because of the first layer, because of the emotions that we bring to the table rightfully and then the perceived – and I don’t – I guess my question would be, I’ve seen it in healthcare providers, the defensiveness of you know, “This is what I’m doing. This is why I’m doing it.” Is that similar in research as well? Like we bring our feelings to the table and then the researchers are like, “OK. Whoa. I’m basing it on this validated study.”

Rachel: Yeah. I think what you’re – just to kind of build, I think on what you’re saying is, I think sometimes there is a bit of a grief period involved in this too. Because you suddenly realize, “Wow. We are more behind than I thought.” Basically, we’re so behind that –

Brenda: We’re almost ahead. [All laugh] That would be a nice problem to have. 

Rachel: Kind of, yeah. 

Brenda: Yeah.

Rachel: But you suddenly realize that you kind of need to jump down a few rungs to kind of help bring them up to where we all need to be. And that can suck. Really, there’s no other way to describe that. It’s just – it’s a very frustrating thing. Short version would be we hadn’t in Canada, been recording data on disabled children, since 2006.

So, my kid was a data ghost, which I just –

Kristy: What?

Brenda: Yeah.

Rachel: Oh yeah. Yeah. And so with that in mind, what they were measuring was from the Disability Tax Credit. And what happened with that as well too, is that when you have poor uptake from it to begin with and not everybody accesses it, you’re not measuring everybody and not everybody’s counted.

So, this has been started to be tackled with the current – actually the first administration of the Liberal government – but now that’s going to be a process that’s going to take some time to rectify as well. But, you know these are the things that make you just like, you know drop your good feelings down to a much lower level and then suddenly you realize that no, you’ve got to start working from that point on. 

And there’s a lot of variety of things that can happen in that respect, from a research relationship, where sometimes you do need to kind of slow down in order to bring people up to, up to speed. Because families advance a lot of great things. We move a lot of things forward. I think about in tube feeding, for instance, we were the people who brought forth the blended diet.

Brenda: Absolutely. 

Rachel: Yeah.

Brenda: Absolutely, yeah.

Rachel: And it took a while for that to get validated and when it did, great. 

Brenda: Absolutely.

Rachel: I mean, I can’t speak to how well it’s doing, but at the same time, that is a thing now, because of families. But it took a while to prove our case and get everybody caught up to what we saw.

Brenda: Absolutely. Absolutely. And I think even too in the way that, you know we see the impact on things like early interventions. What was working for families? What wasn’t working for families? How was News being delivered? How were diagnoses being given? How were we approaching those families?

We’ve seen the impact of how they’ve reshaped the NICUs because of, you know what was important to families. We’ve seen – but you’re right – there’s so much stuff that families, that families figure out and then families push and at some point down the road, you’re like – and when it becomes a thing – you’re like, “How did this even get here? How did this start?”

And there’s a good chance it was a family that was behind that, that pushed that to where it needed to be and got it to where it was. And even things like I look at he menu at Sick Kids – you know if you’ve ever been at Sick Kids with your child in Toronto – and you know it’s – you know you order off a menu for them. They get – you know it’s a meal train. You order for them. They get to – what a novel idea that they get to pick what they’d like to have for breakfast and dinner.

And that was something that came from a parent, that said like, “My kid’s not eating what you’re sending up and, you know let’s make this…” you know and so now that’s just – it’s awesome. And that’s a great thing and has a lot of different – but again, I look at those simple examples and think, that was parent driven.

Rachel: Mm-hmm.

Brenda: And what an impact that’s had on every single family that’s been there since then, right.

Rachel: Yeah. It’s funny to think of how we balk at co-design so often when really there’s so many things that validate that this works and it works well.

Brenda: Absolutely. 

Kristy: Mm-hmm. You guys touched on my next question, which was going to be for anyone listening who, you know we talked a little bit about what patient-oriented research is, but why is that so valuable? I know the three of us stand on a hill and shout about it, but maybe if you guys could share a little bit on, you know why you see this as being as valuable as it is? And Rachel, where do you see this going? Like where can we – ideally we’re here now – where do we see it going?

Rachel: Well, as things go for things like health data, or education data, things like that, what we kind of struggle with in Canada, is predominantly white lens – white middle income – but what moves this forward is educating people to the opportunities to do so. Finding ways that we can make this accessible for everybody to participate.

And to have this conversation embedded well into just the development of life. Like, if you can imagine being a part of a, you know like a Maternal Child Program or whatnot – you just had a baby. And someone said, “Hey, do you know that this is a thing. Would you like to learn about it?” You know and change the world about, you know this, that and the other, about breastfeeding, or something.

That would be really cool to kind of get people excited about the opportunity and to continue that conversation. But how to do that well, is a big investment. It’s not because it’s a big investment that we should not do it. But at the same time, we need to really figure out how to get more interconnected as a country. And part of that is another policy thing too, is we hide behind our jurisdictions, in a big way.

Kristy: Yes. Yeah.

Rachel: Well that’s a thing for the provinces, that’s a thing for the federal government and then nobody gets anything done, because we just keep flapping our hands saying, “You know, that’s their issue,” or whatnot.

So, how we move that is we start to really unify and start talking to one another about big goals that we can collectively do together and within our own provinces. 

Brenda: I think the other piece too Kristy that I would say is that – I mean I look at things obviously not as – I look at things more layman I think, because you know this is Rachel’s role and she does it more from a real scientific research policy perspective.

But, you know I look at things like – I think it’s really important often times for patients to be in – like where I usually get really frustrated, is I would see a study come through and the study would say you know, “Play is really important for kids who are trying to develop social skills.” And I’d say, “Really. You don’t say.”

So how much money went into that study to let us know that that is important? And I’m using that as a facetious example. And I don’t want to minimize that, because there’s probably a reason that was a tithe of funding or schooling or something.

But you look at those and you think that has – I look through research stuff sometimes and I’m like, “What is relevant here? What is going to make an impact? What is…” And so when you have parents that start to come in, or patient partners start to come in and shape that research – shape those research priorities – and talk about what’s important. So, I think that’s the first thing that, I think, is really important, is shaping it.

Kristy: So when you’re bringing – like, where in the process are they [Crosstalk]?

Brenda: So, I think, right on. So, yeah. So where they’re getting funding. I mean I know now with CP Net – they bring us in – so when they get their renewal – they bring families in now to shape research priorities. What areas are important to you? We make a list of them, of the areas and then within that area what’s important? 

So, is it health policy? Is it equipment usage? Is it, you know life skills? What is it that we want to look at? So then families will help shape that piece.

And the other thing that is tied into that, that CP Net, as an example – and I’m using them because they’re a good example – but they’ve tied in now is the whole, so what?

Like, when I go and I listen to research sometimes and I walk around the posters and I look at it and they explain, I go, “Right [in my Atom], like so what? So what? So? What does that mean? At the end of it all, I can read your conclusion – and maybe it’s because I didn’t pass Grade 10 Science – but I always think, “So what?”

Kristy: And so –

Brenda: Now – sorry Kristy.

Kristy: Hang on Brenda, yeah. Here’s my question to Rachel then, what – where does it go from that poster? Because I’ve had the exact same feeling. Like I’ll read a poster, you know [Sighs] in back pain leads to mental health issues. So, I’m like, “Yeah. I know that. So what do you – what gets done with that?”

Brenda: With the, “So what?”

Rachel: And that’s the big challenge, I think one layer out of a myriad of layers, upon which provides some issues. I would actually say, first it starts at the poster, given the fact if we were going to create an environment upon which patients and parents can hang out in, you want to make those closer to understandable. And there’s actually a movement called, The Better Poster.

Kristy: Mm-hmm. 

Brenda: Oh, I love that.

Rachel: Yeah. Better Posters basically are, if you can imagine, a giant – just like a big main coloured band that says, “These were the results of the study,” as you simplified it Kristy essentially, you know back pain causes mental health issues. And then on the side, is the minimalized data for the people who want to ask the really big question.

Brenda: The people in the back, right. [Laughs]

Rachel: Yeah. And actually, if you go on YouTube and you do a search for Better Posters, it actually talks about how much easier it is to retain that information and bring that elsewhere.

Brenda: Yeah.

Rachel: And so – and then moving forward from that, you want a culture of academia that is going to help support you in moving your information forward in whatever implementation process. And so there is actually things like implementation science that can aid in some of these processes as well too.

I think that stakeholders, such as patients and families, should they decide to really get into this, could be the next brilliant implementation scientists in all of the processes here. So, it really, it really does depend on what your subject matter is, as to how you go about implementing something.

So like for instance, I’m working on something right now that’s post-diagnosis for families and would really work well in every Child Development Clinic, across Canada. So my plans are going to be different than somebody talking about back pain or something to that effect, like. And – but they’re all big though.

Kristy: You bring up such a good point and I know Brenda you struggle with this at times too – the implementation, right. So, [Laughs] you know, what –

Rachel: Well, I was going to go one step further, but you guys, yeah, you’re smarter than me, went right to implementation. I was going to minimize it more than that, but. 

Kristy: OK. You know not considering we get – so we have the research. We know the outcome. And then what do we do with it – to Brenda’s point, the so what? So now we’re going to implement these changes, when you don’t consider the people who actually have to implement it.

The patients or the caregivers, the families. Because often times, I feel like that step – when that is missed – everything else that came before it becomes mute, because it can’t implement.

Brenda: But even if it needs to be implemented, I think warranted even more basic, because that’s again – full transparency – I didn’t finish Grade – you know after Grade 10 Math and Science, that was it for me. 

So, you know again, when I look at a research poster and I understand the concept of thesis and I understand the concept of conclusion. So, if the thesis is, “That back pain causes mental health,” and the conclusion says, “Yeah, we just proved our thesis,” I still come back to, so what?

So, I know that there’s an implement – but maybe not implementation. Maybe the simple piece of that research study has just been to prove that thesis and there is no implementation, right? Because that also happens.

And then that’s my other – that’s where I sit there and say, “So what? OK, great. You did this amazing research project. You established this. So what? What are you going to do with this now? Are you going to take it to the next step? Is this going to go to policy? Are you going to create resources around it?”

You don’t see that a lot of the times. You see the conclusion which supports the research, which supports the thesis. Or the conclusion that doesn’t support the thesis, because you weren’t able to, you know finish that in your research. But that’s where I sometimes get hung up a lot, is I look at them, I go through them, because not all of them are – you know you’re not always able to implement – you should be able to if it’s research and that’s my point.

Sometimes, do we do research for the sake of doing research? Do we do research because there’s money out there available to do research on something and it just looks good. Why not? Why not take the money and publish something and do research on that – that actually doesn’t have an impact – a positive impact – on the people who would be affected by that research. And I do see that happen as well sometimes.

Rachel: Mm-hmm. Oh absolutely. And, I think, part of it that’s really important here as well, is that when you get patients and families involved, you get some of the most excited knowledge brokers that will ever come. So, with our Facebook group, Parents Partnering and Research, I bring stuff where I can, in terms of just new studies that have come out, News articles, things like that.

I would be very interested in seeing how that spiderwebs out into the world you know, like, “Oh. This appealed to me. I’m going to share it.” And then it goes out further and further and further.

The same thing goes with people who are very excited about being invested in a particular study, because they found it meaningful. They thought, “I’m going to devote my time to this – to being a partner here.” They are the people who are going to be the forces of good energy that feel that it’s worth feeding not only themselves, but others who may find merit in the same subject matter. They’re the people who move this forward.

So, how we do that well? It’s a big, complicated affair. I just think that we need to start thinking more out of the box, in that way. I think that’s kind of why I started doing my own podcast, was to kind of put some of that information out into the world, “Hey, this is a cool thing I learned at work,” essentially being the model for a lot of the conversations that I tend to have.

Kristy: So what you’ve said is so interesting to me, because I think – and I’ll use my example as an example, like what I went through with my middle son Grayson – we participated in a research study for Women’s Hospital, from the time he was born until the time he was five. 

And I went in super excited, really keen. I’m absolutely aligned with helping you guys figure out whatever you need to about postpartum. At the end of that five years, I never heard from them again. And so, I think if we were to take it one step back, I went in not having any expectations, but I know that when I finished, I felt dejected. 

So, I think if there was a framework for patients, or parents, or families where you understood your expectations going in – and each research study could be different – but taking that minute to bring all stakeholders onto the same page – rather than assuming that the layman people like us, know exactly how this is going to go – could do, I think, a whole world of good in maybe eliminating some of the barriers or the roadblocks later on.

Because after that happened, I was like, “Well, I’m not going to –

Brenda: I’m not doing that again.

Kristy: I’m not doing that again, because that was, you know five hours a month for five years.

Brenda: Yeah. For somebody else.

Kristy: And I just wanted to know how it was used? Or did your, did you prove your thesis? Did you not, like?

Brenda: Yeah.

Rachel: Oh absolutely. I heard a presentation from a psychologist that was associated with one of the – what’s called a SPOR Network. So it’s basically Supporting Patients, Supporting Patient-Oriented Research essentially.

It’s these networks of people and scientists that do patient-oriented research across Canada. And basically what this person had said, was that one big value that patients have, is learning outcomes from the study. And that gets missed a lot. And I think that it is an entirely important question to ask. Some people might not want to know.

Kristy: Right.

Rachel: There’s a study somewhere – after my son was born – talking about what’s called de novo translocations essentially – ones that are spontaneous chromosomal diagnoses – and there’s a picture of him somewhere. I would have liked to just read it – you know even if you didn’t find anything, that would have been nice to know.

But – and that’s the thing about changing the culture, is part of it ends up being, you know talking to the new generation of people coming out. But also too, challenging the people who have been at this for a while because I don’t think that that’s – it’s worthwhile, if you can’t do so. But yeah, and that’s where some advocacy lies within the system itself, to do that. And that’s why I love the course so much, in that respect.

Brenda: I sit on a Council for the AACPDM – the American Academy of CP and Developmental Medicine – and they were having their big Annual Board Meeting. And they asked me to come in and do a presentation. I had to have some asks of the Board.

And so we were talking about how, you know how we better involve – so the Committee that I’m on is a Community Council. So our whole idea is supposed to be a conduit, a resource, advice for the larger academy.

And so, we were talking about how we could liaise with each other, how we could get involved with each other, how we could do things with each other? And so anyways, they said, “Well maybe it would be nice, you know maybe we could get you involved to take a look at the program and you know you can take a look at, you know is there some things on the program that you think would be good? Or could you take a look?”

And I said, “How about we do one more.” I said, “How about every single thing that you have in that program that has anything to do with a patient or a parent, has a patient or a parent that’s presenting alongside the researcher or the clinician.” And it was like, [Laughs] one of these. I did – I was like, “Am I muted? Am I muted?”

Kristy: Beep, beep, beep. [All laugh]

Brenda: And – but it was so – and it did – and you had the people nodding who do that automatically. I mean Jan Willem Gorter was on there, you know Paige Church was on there and they were like, “Yeah, of course.”

And then you have [Laughs] these other deer in the headlight looks like, “What are you talking about?” And I honestly, I said, “There should never be anything about us, without us, ever.”

And I’m telling – I said, “When you have a study that has anything to do, or you’re presenting anything that has to do with a patient and/or a parent or anybody, why aren’t they up there beside you?” That to me is true partnership. That to me means, you know what, this was somebody that was involved in our study. This is somebody who we connected with. This is somebody we consulted with. And they are here today, to present alongside us, the research, the initiative, the program, whatever it is. That speaks volumes to me.

And when I see something presented and they’re like, “Yeah. So, we did this – so we have this presentation today…” all about the impact of parenting a child with a disability. And I’m like, “Where’s the – [Laughs] where’s the parent?”

So, you know I just, I mean I think that’s another piece that we have to be also more cognizant – aware of – is that it’s great to involve us in the process – but from beginning to end. So if you’re going to involve us in the middle, at the beginning, whatever, have us at the very end there. Have us as part of that final presentation – that final piece. 

Because I’m going to guarantee that there are going to be members in the audience where you’re presenting, that are going to say, “Can I just ask the parent – can I ask the patient their – can I ask the parent…” They’re going to ask that. There’s no doubt about it. 

And it just looks to me to be so much more genuine and impactful if you actually have that person there with you. And it boggles my mind that that’s something they were like, “You know, we’ll write that down and we’ll put that in the box and we’ll see where we can go with that.”

And I thought, that should be a requirement. You shouldn’t have your presentation accepted – your abstract should not be accepted, if you don’t have that piece in it, in my opinion, but who am I?

Rachel: And just to add to what you’re saying too Brenda, I think back to my college days and writing a paper and talking to my professor and saying, “Am I supposed to agree with whatever I read in this book that I’m reading and supposed to write about?” 

And he laughed. He’s like, “Of course not. This is just a thing and you’re supposed to tell me why you disagree or agree with it.” And I think about that revelation in my mind that I didn’t have to go along with what was being said. In the same vein as to what these relationships that we have as well too, is that we don’t provide space for people with lived experience to understand essentially, what is their own kind of self-proclaimed Bill of Rights, in terms of what they can provide insight on? And that you can be gently fierce and challenge certain notions within a system, things like that.

We still kind of get sucked into that power differential a little bit, in terms of where you sit and where you belong. I mean granted there’s a huge ethical conversation about, you know the whole expertise subject and that’s a whole – yet another TED Talk for another day. But to be said that you have a level playing field, denotes that that playing field is level. And we need to kind of help encourage people with lived experience, to understand what that means and what that means for how – things that you can say and your actions.

Kristy: I think it comes with – we talk a lot about patient rights, but that also – to your point – patients have responsibilities as well. And it’s got to be a two-way street. Like we’ve spent this – our time – talking about where the system falls down, in terms of, you know when they involve us in the research, how we are treated during the research – to Brenda’s point – are we there at the outcome?

But I think what you just said, is so vital for, you know how do we represent ourselves? How do we – can, you know do you go in gently fierce being open to hearing everything? Because I’ve sat on panels or participated in studies where I go in with my bias and I go in thinking, this is what I want to change, this is my lived experience, this is what I bring to the table.

And then I hear other things. And I’m like, “Oh, maybe I need to adjust my expectations a little bit,” and that’s also hard.

Rachel: Absolutely. Absolutely. I think that that is a huge reality with this as well too, is kind of understanding a deeper version of the systems that we weren’t privy to prior, in that way.

I think in some ways too, there’s a bit of a challenge, in regards to making space for understanding your life as well too and the realities of it. I kind of made an understanding that I don’t get involved in anything that I can’t walk away from with immediacy, just out of sheer necessity. 

And to do so, meant to communicate a lot of very distinct realities. The day my son passed away, I was calling family and friends and things like that and catching them up, but I also called somebody within the study and said that I’m not going to be – consider me non-existent for the next couple of weeks and this is why.

And to put that into the hands of somebody meant really being [very real] of a hugely terrible day. But these are the things that kind of come with these relationships too.

Kristy: This has been – I can’t thank you enough for this conversation Rachel. I would – well we definitely want to continue it. You’ve – you bring so much expertise and insight with your lived experience and with your professional experience. And what you’re doing, I think, is so valuable. 

Of course I live in the Rare Disease space, so I’m acutely aware of the impact that research has on our ability to access treatment and care. And – but I know that it doesn’t just stop with our – with Rare Disease. This is so vital for everybody, to better shape a healthcare system that can support everyone’s needs.

You know just thank you from, you know – for sharing with us today. And I hope that – do you have any parting words? Like anything that you would like to leave us with – any hopes for the future? Or your next year, or?

Rachel: I think we have a long road ahead, in terms of getting patients and families connected in the research community in Canada. A lot – I would say a small percentage of people that have been getting involved in the Family Engagement and Research course, have a very distinct interest in rare disease and pursuing clinical research, for a particular rare diagnosis. 

And at this point, there is only so many resources that I can provide. And I think that we could be doing infinitely better to service this particular need. 

Moving in that space requires innovation that – and tools and learning from other people, their amazing stories – in terms of how that has really benefited a lot of people, but we’re not learning from that. And we need a greater understanding of how to leave legacies like that, to help move health research forward.

Kristy: [Sighs] It seems like so – such a big – you’re right – it’s – you don’t have enough resources. There’s just that I – yeah, I don’t know. I have nothing wise to say to that. It just – there is so much more we could be doing. And I will say – and you touched on it too – from where you first started to where we are today, that’s tremendous growth, right?

Rachel: Yeah.

Kristy: You’ve made a sizeable impact. And, I know, so many Rare Disease families and patients have made a sizeable impact. So when you look at it from a 40,000-foot view, you’re like, “Oh gosh. I haven’t even moved.” But when you get down to it, you’re like, “OK. Well I, you know, I moved a smidge and maybe that’s the best, I don’t know, that you can do today.” [Laughs] I don’t know.

Rachel: Absolutely. 

Kristy: I can’t – like when I think about the work that I do in Rare Disease Advocacy and Patient Engagement and how do we, you know involve patients in managing their health and pushing forward to get access to care, I have to look at it in really small chunks. Otherwise, I just get dejected, so.

Rachel: Absolutely. I brought a bunch of families one time to a Research Conference. And I met one of them in the hallway just in – they were in tears. And they said, “Wow. This is a big deal being here. The system is broken.”

And I came across this analogy that I use a lot – I don’t know, it just kind of popped in my brain – but basically, if you picture a giant mural and there’s a message in your head that says, “You have to paint this whole thing yourself.” And in that respect, there’s nobody actually saying that, but for some reason we have a culture that says that you have to do all of these things yourself. 

And so we try and we try and we suddenly realize that the scope of this is never going to be realized by single people, but upon which – if you focus on one particular area of that mural and make it your art, other people are going to witness that and want to collaborate and add their pieces of art. And that’s when we really start to tackle the scope of a giant need in the long run. 

Kristy: I love that analogy. I love it. That’s such a – what a perfect way to end this. I’m so grateful for the piece of art that you’re focused on. So thank you. 

Rachel: Well, thank you for having me here today. This was a wonderful conversation to have.

Kristy: Well hopefully we can do it again soon. And everyone, thank you for listening.

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