Julie thinks that patients and researchers should be trained in the same room to level out power differences

Transcript

So supporting engagement and partnership in research starts at a level of first of all identifying who those patient and family and caregivers are that want to partner. And so I think we’ve got to be really public about the opportunity. I think we’ve got some – a really great baseline to start with with the introduction of SPOR, the Strategy for Patient-Oriented Research from CIHR. I think we want to open up that opportunity to more people. I’m not sure everyone is aware of that.

So being more open, being more public about the opportunity. The second thing is that not everyone is sure what they can contribute to research. So training and I’ll use that word loosely, but training patient partners and training researchers at the same time in the same room as to what it means to partner in research. What is it that we’re here to do together? What does that look like? And I say doing that training together because levelling out the power differential is very important. I don’t think it’s as strong a power differential as it is with clinicians and patients but there is in researchers. I felt that when I first met the academic that I was working with, the researcher I was working with. What’s this mom going to contribute? And then once we started to have that conversation together he realized I did have a lot to contribute.

---

Go back