Defining partnerships


As for the engagement thing, I think engagement is really difficult to… I also have problems with it and I’ve thought about it and patient engagement, we put them together and English grammar allows us to put them together, patient engagement. We tend to assume it’s a patient being engaged or patient engaging research and I never know, like patient engagement, is it also us as researchers or care providers or whatever, engaging patients? Initiating a dialogue or participating in dialogue in which we engage with patients and is it also patients engaging with us, in which direction does it go? I don’t think it’s that clear, or it should be in both directions, or whatever. But I think, you know just to give you an example, I think patients are engaged in research, in their own perspective, they’re engaged in research, even when they’re just filling out a survey and just participating in a study. 

I think there is a part that is I’m engaging in my care because participating in this study will improve something or will give me more information or I will learn something new. They may have those hopes or those needs. So, I think patient engagement can happen in invisible ways. And then is it involvement or is it participation or… I don’t know. When you look at the Strategy for Patient-Oriented Research (SPOR) website, the supporting patient-oriented research, it’s like patient engagement is the active involvement of patients or other stakeholders in all different aspects of research and this is great, but you know, engagement and involvement they’re kind of synonymous, you know what is meaningful, what is authentic? I don’t know, I’m not super… I don’t have a clear answer. 

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