Path to involvement

Transcription

…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.

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