Patients and researchers need to be honest with each other about expectations suggests Zarah

Transcript

Oh my gosh, every day [laughs] I feel like I learn something new, which is why I love it so much. And I always say my best days are the days where I actually get to sit down with patient partners and talk to them and hear about their experiences and their stories. I think one lesson that I keep learning over and over again, and I don’t think I can learn it enough, is the importance of communication, it’s just so paramount. And so, like I always say, you know, one of the things that we often take for granted is, you know, behind a lot of the success of patient partnerships is building trust and having that kind of a relationship, and I think that communication is a big part of that. And so, so long as you are making sure that you’re clearly identifying the reason why you would like to partner with a patient. 

And then on the other side of that as a patient partner, if you’re clearly saying “Okay, here are my expectations to this partnership,” then I think that is a significant key to success. So I’d say communication is just like, yeah, I cannot stress that enough, from, you know, the initial onboarding process of, you know, just be polite and have manners and think: Okay, what can I do to better support this person that’s coming into our team to make them comfortable. You know, give them as much information as they need to comfortably participate in our research project, you know, straight through to the actual conduct of research so, okay, now we have this person involved, they might not be involved in the entire project but they’re involved in this piece, how can we make sure that we’re continuing to communicate with them to let them know that they’re still important but they are still involved, and that they are still important to the team. And then, you know, finally this dissemination so … They’ve been involved in this research, they own it as much as anyone else, and so how can we make sure that they can take that and bring it to their communities and share it with whoever they feel they would like to. So yeah, it’s just remembering that communication and being explicit about things is so, so important. 

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