Researchers must be careful not to evaluate patient partner roles when planning an evaluation of the partnership, says Zarah

Transcript

Yeah. It’s part of what we’re trying to study right now, actually. It’s an interesting field, again, for so many reasons, but it’s not like any other way that we study rigour or validity, you know, how do you study the validity of a patient experience? It’s not really something that we have developed, or I don’t even know if we can work on developing it because it is such a unique thing. And so impact is a really interesting question, and I think it comes back to the interpretation of the team. So the team will have goals that they want to achieve. Has the patient partners’ involvement changed that in any kind of way, both positively and negatively, right? And so I think it really is dependent on what the team was looking to achieve. Now, I think it’s important to be clear. When we study impact we’re not necessarily saying like “Was this person’s role valid or not?” I think we all know and accept that having a patient at the table is very important, and that’s not something that we should question, and it’s not studying what they did, but I think it’s taking the view of like, okay, what has this done to our research as a whole? Has it made the outcomes more relevant? I think that’s something that we can measure. Has it improved the way in which we work with people and look at our participants? Then I think that’s something that we can measure as well. But I don’t think – and I think it’s a slippery slope to say we’re evaluating someone’s role, because we don’t evaluate the other people’s roles in our research team. But I think if we look at the impact of patient engagement on research then that’s an important question to ask, because I think we should be measuring the success. And if we’re doing things wrong and maybe it’s hindering our success, then we should understand that as well. So it’s maybe evaluating the impact of the practice.

 

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