Laurie Proulx has lived with Juvenile Rheumatoid Arthritis for 28 years and it is her experiences that led to her involvement as a patient partner in research. She has worked as a patient partner in a variety of research projects such as pediatric rheumatology, shared decision-making, clinical practice guidelines, maternal health, workplace, and most recently surgical safety. Laurie has served as a patient engagement ambassador presenting at the SPOR Summit and the Surgical Safety Network. She is an advocate of early engagement between patients and researchers, believes in the power of teamwork, and building positive relationships.
I mean, I can keep up now, but it took a while, a good serious learning curve, to get up to speed on the terminology and the language. I feel quite comfortable now, but even then, as I sort of open up into other areas, there's always new things, right. Like, I mean, I know rheumatology quite well now, and even over – you know, even with surgical safety or maternal health, there’s these different areas that I’ve always got to learn something new.
A few patient partners also discussed potential concerns around how their information will be used or shared, and considerations around being easily identified through their contributions. For example, Julie shares the following: “I’m not sure about the perception of risk for patients. Probably the biggest risk or concern that patients and families might have is the sharing of their information without their permission and use of their data and their information beyond the scope of what they had originally agreed to. There is a risk for patients who are active in the system of sharing back perhaps around patient safety or quality improvement research around adverse events or poor experiences that they’ve had. They fear how that might impact their ongoing care. So that is a potential risk.”
I found, like, just some of the challenges were just around terminology. And it wasn’t just me as a patient, I actually saw it amongst the different researchers, because I think it’s, like, everyone kind of specialises in their own area and trying to bring it together was, I think, challenging, even for the person facilitating the discussion, right. So we all have such different perspectives.
I think you’ll see more – I see a world where patients are more involved and we’ll see more uptake of the research in the real world, right. Because that’s what they care about, right; they want – or at least I know I care about that, like, I want to see it used. So I don’t want your research to stay in a publication, you know. I know that’s important and I'm not saying, you know, this whole scholarly approach to things, but I want it to be used, I want the new knowledge used so that I can benefit from it. So I think – I don’t know, that’s what I’d like to see as the future, right, more efforts on KT and more, you know, actual patients involved in the leadership maybe, of research.
…It’s a long story with my experience. I mean, ultimately, I live with juvenile rheumatoid arthritis. I was diagnosed when I was fourteen years old. I probably had showed symptoms before that, but lived with the disease through, you know, a lot of tough times, there’s no doubt, right through high school. When you're fourteen, it’s just a hard age to begin with, right. and I think when you're throw such a serious disease like RA into the mix, it’s quite hard. And ultimately I feel like that experience with my disease has kind of formed who I am as a person. And there’s a lot of challenges that it brought, but I like to think that over time too, it’s brought some good things, so I guess having lived through some challenges, like, I said, not everyone, I guess, has to go through.
And I guess also with my parents, I had – you know, they were very supportive and very helpful through my journey, but I like to say that I sort of got more involved as an advocate, not just for myself, but for others, probably in my early twenties, when I was trying to be – or tried to get access to medication that wasn’t approved yet in Canada. And I have lived through a lot, I’ve lived with the disease for thirty years, so I mean, the treatment paradigms were changing tremendously at that time. So in a lot of ways I've had a huge benefit, you know, of research in the end. I mean, and I guess it’s just sort of becoming more of an advocate for myself, you know, as I grew into a young adult and that, and I guess wanting to have a voice through that. I kind of just happened to cross the patient group, right, and this is CAPA – the Canadian Arthritis Patient Alliance – that I was talking to you about before.
And I was introduced to this whole other world of how patients are getting involved in health policy discussions, as patient partners in research, because it was through that that I had my first experience with the Canadian Arthritis Network, which was a network of centres of excellence. I don’t think they exist anymore now, through Canadian Institutes for Health Research (CIHR), but I’ve heard that it was longer-term funding to fund arthritis research, I think from, like 1998 to 2012/2013. And so a key pillar of their work was not just interdisciplinary research, but engaging patients as partners in research. So that was probably my first formative experience as a patient partner of research.
I mean, as someone with no science background – like, I have a business degree [laughs], you know, I never went and did a master’s or PhD or anything that researchers, you know, ultimately have a tremendous amount of schooling and education. I have a huge respect for the community overall. But I was introduced, I guess as – I think my first experience with that, it was almost, like, you know, how they do those priority-setting exercises. It’s sort of similar to the James Lind Alliance process, so that was my first experience as a patient partner, right. So in some ways it was just an amazing start when you think about it. I remember I flew to Calgary for a weekend, and you know, here I was, maybe, I don’t know, twenty seven, twenty eight years old, and I sat in a meeting or a workshop with basic scientists, clinicians, even natural and alternative – or complementary and alternative medicine practitioners, and patients were an integral part of that. So that was my first-first experience as a patient partner, right, which was a bit intimidating at first, I have to say, because it’s a completely different world than what I’ve done, you know, working – like I said, with a business degree.
Yeah, it’s kind of a hybrid, it’s kind of all over the place. I mean, I’ve found – and that kind of can be a challenging thing if you're new to this and you haven't really figured it out. If things are almost too nebulous and you're new to being a patient partner, it can be really tough, you know
Yeah, yeah, because it’s, like, if you're new to it and then they also – maybe they're too open and that can be tough to navigate, and everyone’s comfortable in varied degrees of abstractness and things, right. But I think now, like, I find for a lot of the projects that we get involved in, it’s fairly clear, or I can influence it to the level I want, but I'm comfortable doing that now. Like I said, if you were someone who’s just starting too, that would be tough, I think.
And sometimes, you know, I encountered that, especially earlier on, you see how some researchers are maybe more open to others. So I’d have to go after them sometimes and be, like, well, can I see the grant, I don’t want to just provide a letter of support if I haven't really understood it, or had input into it in some way. I mean, depending on the role they want me to play in it as well, so I guess those early experiences kind of taught me where I should be involved [laughs], and ask the right questions. But it’s not always easy, right.