Patient partners in Esther’s projects help determine project outcomes that are meaningful to patients

Transcript

And, I remember there was something that was very shocking to me that I never even considered, because, I just don’t live that life. And, then, I made sure that I would then include those into my research questions. So, since then, I’ve now developed a research team. Tomorrow we are actually having our first large planning meeting. And, what I find is super exciting, is that we are a team of six academic investigators and seven community scholars. So, I have my colleague is also a person with lived experience. She has been on many other research projects in this kind of role, so, she knows what it means to do research. What can and cannot be accomplished from it. And, speaks the language of it, easier than maybe some other people. So, she helps me [unintelligible] and, that’s fantastic, because she helped me find these other women. I always make sure that anything I send out to the team, I have it reviewed by her first, to make sure that I’m not stepping on any toes that I use, like, I’m confident myself that I would use good language, but, I think, it’s just better to have that other set of eyes, of somebody who actually lives it, to know, is this appropriate or, not? You just never know.

So, I find it, I find it is very exciting. We meet very regularly. I want to have this very close collaboration with her throughout the whole project. And, so, tomorrow, we are bringing all these community scholars and other researchers to Ottawa to have a large planning meeting. And, doing that, we will decide on the outcomes, on our variables. The study will mostly be done through Health Administrative data at ICS. But, those people with lived experience, they can go through each of those variables with us. I’m going to give them time to explain to them exactly what these variables mean. But, they are, they know what is important to them and what isn’t. And I like, the idea of having them in the room, at exactly the same time as the obstetrician and the midwife and, the primary care physician and, the infectious disease specialist, to make those decisions, all as a community. And especially like that it’s an equal number of both sides. So they actually feel like they have a voice. I think, that’s key.

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