John is a trained educator, and since retirement from teaching he works part-time as a public educator and patient advocate with a national heart health foundation. John got involved in this work while he was recovering from heart disease. He wanted to learn about how patients can use their voice to have an impact on the care they receive. He also wanted to learn about how men and women each experience heart disease, particularly as he had unusual symptoms himself. His own health experience led him to get involved in a research project about heart health at a local university. He helped to search for articles related to the project, prepare grant submissions, and develop educational resources for patients. John had formal research partnership training through an online course that he found informative. He feels that patients/caregivers should be provided with training to help increase their confidence and ability to contribute to the research process. He also suggests that researchers create defined roles for patients/caregivers and be clear about what is expected of all involved to ensure that the engagement in research partnerships has real value. John looks forward to continuing his involvement in research and feels that others who are interested should get involved because patient experience is so important in shaping research priorities around patient care.
So if you're curious and you're interested, go for it. Take the Patient Involved in Research course. It's a great start. Hopefully by then there's some boot camps. But you've got something, if there's an interest it means you have something to say. You're coming with experience whether a caregiver or a patient, right? Oftentimes hospitals, doctors, physicians, researchers don't know those experiences. They haven't had them. They know how to treat, but they don't know what the impact of that is on your life. And that's what people need to hear and they need to know what kind of treatments actually work for you.
And what's important in your life. And my hope, I'm excited about, and we're not going to go there, is value-based health care. Right? And we're not going to go there for money, right? When it should be the opposite. That's where we should be going right away for - to reduce costs. But, I think patients can add to that. Right? Because patients need to demand who provides good care and where can I go for really good care? And who provides crappy care? And if they're providing crappy care, why are they still in business, right? And if we're not going to do outcome research and publish it then one of the ways of getting at that is patient stories, right?
I think then you start to realize that - so for me what it does, is it creates empathy for the researchers. Because part of the movement to patient engagement - and I also see it in the little course that I helped to facilitate and tell my story about at the UofT for patient-centred care, is that often times we're so busy attempting to do things and we're rushing to deadlines that as soon as somebody throws something new into the works it's like, ‘oh my God’. You know? And I just got turned down for this research grant and I've got to do this one and I've got a deadline for here, and now you're telling me I have to figure out who this person is? So I think what it does for me, it creates a little more insight and a little more empathy in the process to say, okay. So how do I address that and if I really want to be engaged and I want to be part of this process, but I want it to be in a valid way, so I want to be a real contributor. How do I let the researcher know that I understand some of the hurdles they're going through as a way of creating dialogue and a little more empathy?
I'm much more involved in terms of what's going on with me and what's happening and where's the process? And also for my wife and family and - right? So I get more involved in that process.
Interviewer: What does that mean? Do you challenging -
Yeah, I'm not afraid to speak up. I'll want to know some things. My wife's about to undergo a procedure and I was very clear about, you know what? ‘You need to ask these questions because here's the research and it's not good. And, so let's get to your doctor and raise those kind of questions’, right? And I'm not sure at one time I would have spoken up around that, right? And I think oftentimes the public, especially as I begin to explore more and more chronic disease, is I think the public is that things just happen to you and you really have no control over. When in fact you have total control. And so how do you get people to that process of knowing that you do have control and you can have input and you do have a voice? Right? And you also have to take responsibility.
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.