Path to involvement


I was living a lifestyle of recovery from heart disease, and part of that lifestyle was going to the gym every day, watching what I was eating, and I saw an advertisement for a part time position to coordinate the HeartWise exercise program for central, southern Ontario. So I applied and got it.

And then the [name] offered me a position to do public education and patient advocacy. So, I've been doing that for a few years now, probably three and a half years, maybe a little bit more. So a big part of this is for me has been learning. I've been like a sponge at getting involved in the process and part of that was attending a boot camp on drug policy, drug access in Canada, and understanding the Canada Health Act and drug approvals and those kinds of things. That led to more of an interest in how do patients have a voice and how do they express what's going on. So part of that was also serving patients with cardiovascular rehab programs across Canada. And that got me even more interested.                                         

So then I was involved with a patient advocacy group with [name] and heard about the program being offered at St. Mike's, Patients Involved in Research. And took that program as well. In the meantime I had been involved in a project with [name] around prodromal signs for women. And part of that was that oftentimes women are treated differently, women have unusual symptoms for heart disease and a heart attack. Go to hospitals, get often diagnosed as indigestion and sent home. And the mortality rate for women is much higher than men.

So that created lots of interest for me and my original signs when I had my heart disease, which I'll have forever, were different. So I didn't have the traditional men's signs of a big pressure on my chest, although I had that. Didn't know what it was. I had no pains around my heart. I had a pain by my right shoulder, but nothing ever near my heart. So I always thought it was my lungs. I had severe night sweats, which is not usual.

So it was interesting, so that kind of triggered and I think it was part of the invitation for me to be involved in that project.

In that project it meant that I was going to review literature reviews and submissions that - in terms of getting baseline knowledge around what's already been produced on prodromal signs for women. So what's the research tell us? And those proposals that were being pulled, I was coming from a patient perspective, as was another woman who was coming from a patient perspective. And we were to review each of those lit reviews in terms of whether they were in or out as part of it. And then there would be multiple roles as the research rolled out over, I think it was three to five years. So I - we would have been involved pretty well through.

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