“Having some better training in the preparation for participants, I think, is actually really important to do, so that they feel both comfortable to speak up and also well informed about what it is they are discussing.” (R01)|
“So some sort of course of training that would bring people up to speed—and it’s not really for me because we can do that too, but I sense that it added some anxiety to them to be in the unknown or uncomfortable with the process—and to have some sort of way of training them so that they’re a little bit more comfortable starting up.”(R04)
“[Patient training] just so that they start to become experts in, you know, the nuts and bolts of how research is done, which I think will help inform them and us as to how to better design protocols and better involve them in all aspect of research.”(R08)
“Need to support the patients as far as travel to meetings and engagement and that.” (R08)|
“Make sure that there’s a resources available online for example, on their website specifically or towards researchers that want to make that patient involvement more active or more a reality in their own research.
Incorporate patients in the CNTRP model, is to do it in a committee structure that allows patients to be engage together that way whenever we propose ideas or ask them for their input. [sic]” (R10)
“Have a patient committee with the patients managing the committee and giving their opinions and all that, and researchers acting as observers.” (R02)|
“[PE] could be integrated within the CNTRP, I think that would be a really good start. […]So, I think one of the ideas that our group had was to sort of create almost like another core, in addition to core 1, 2 and 3, made up of patients; and then you could sort of have these solid group of patient that could be asked if they want to participate in different aspects of the research, but then also it would be sort of its own body within the CNTRP then that would play a role at the annual meetings, that could play a role in the evaluation process and things of that nature. [sic]”(R09)
“Interviewer: Could the CNTRP actually offer you something to help you out in how to do it [PER]?
Participant: Yeah, certainly, I think the CNTRP, given its effort, could certainly a sort of vehicle or resource for that for sure. And I think it would be worthwhile making that sort of one of the pillars or strength in CNTRP is patient engagement and patient-relevant research, should make sure that there’s a resources available online for example, on their website specifically or towards researchers that want to make that patient involvement more active or more a reality in their own research.[sic]”(R10)