The research process, as well as people’s roles and responsibilities, should be explained from the outset. Dawn thinks this would help prepare everyone for engagement.

Transcript

For training of researchers and patients and family to be as part of the research team, I think that, if I’m thinking about the patient and family first, I think there needs to be some explanation around how the whole research process works. And discussion around what their role would be and sort of the different elements of the – how the study will be rolled out. I think there also needs to be discussion around the influence of funding on the ability to truly conduct a study and what the limitations are when you have a much smaller budget, which is more common these days. So I think from a patient perspective, and family, we need to help prepare them for what, how does it work and what’s their role. And also what are some of the challenges of being a patient on the team. And as a researcher I think we need to be thinking about how do we help prepare researchers to be able to work with patients and families as part of the team, and equally valuing their perspective as they do other people on the team? Because I think that there is sometimes a hierarchy in terms of whose opinion counts most and patients and families may not be considered to be part of that hierarchy of whose voice is heard the most, or respected the most.

---

Go back