Table 2 Anticipated barriers to PE in research pre- and post-workshop

Resources and workload

“I think it’s a lot of work to bring patients up to speed on the process and the content; it takes a lot of work. And it’s unclear whether the benefits of putting that much time and effort in are going to add value.” (R01)

“I think it also creates some encumbrances that need to be balanced, […]. I think it does also create some challenges for the researchers to fully develop a project in a timely way and get it funded at the level that they’d like to get it funded, etc.” (R03)

“I think many of these patients have full-time jobs and therefore trying to engage them during working hours is difficult. Many of them need support to attend meetings; getting time off work to attend meetings during the working week is difficult.” (R08)

Language

“I think, for one, it’s just the language, the communication. We’re all used to talking in a scientific lingo or whatever, and, you know, we have to be able to make sure we are all talking the same language so we can understand each other.” (R07)

“It also kind of makes things a little bit more challenging because […] especially about all the language that we’re speaking, and I’m not talking about French or English.” (R04)

Risk of tokenism

“It needs to be really well figured out how patients would be able to contribute to the grant writing.” (R10)

“It’s hard to naturally see how that’s going to work, having a patient there. I mean, it ends up looking very token rather than very practical.” (R01)

Patient selection

“Figuring out what do we mean by patient engagement and which patients are we actually including in this process. […] getting kind of the right mix of appropriate representation can be certainly challenging.” (R08)

“The problem is when there is an additional party who will have the patients to bring their agenda. [sic]” (R05)

“[There] are all groups that may not be able to volunteer in the same way, then, as a result, you’ll be selecting from voices that have a particular perspective that not totally representative of all patients. [sic]” (R01)

Power imbalance

“[T]here is obviously a power difference, power distribution issues, especially if you involve patients; they are vulnerable and, of course, physicians have the relevant power in the health care, so that’s somewhat unequal, so that has to be somehow balanced out. [sic]” (R06)

“My concerns are related to transplant research in general, or medical/biomedical research in general, because, well, anyways, it’s a complex issue and I’m not sure if the whole field is as open to the idea. [...] There might be barriers from our part, from the transplant community’s part and the medical community’s part, and that is, you know, I think it is very complex, because this is very deeply related to how we see problems, how, what we see problems, what are the hierarchy in research. What are our own interest and how, through patient engagement, may interfere with those or maybe interact with those. [sic]” (R03)