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Table 6 Representative quotes from interview participants

From: Comparing three approaches for involving patients in research prioritization: a qualitative study of participant experiences

Motivation for participating in research activities
 • The reason why, just simply because somebody asked me, and why not? (participant, crowd-voting)
 • Yeah. I needed some information about back pain and back pain relief. And I saw different kind of inputs from participants and also from the people conducting the poll and the investigation. (participant, crowd-voting)
 • Well, I think research is always good. I mean, I’m at the other side of the spectrum in my life, but it might help other people as they approach their 50’s and so forth that maybe there’s things they can do while they’re still younger to be a preventative thing. (participant, Delphi)
 • Well, I thought I might learn something as well as if I had the opportunity maybe to contribute some of my experience from having a lot of low back problems. (participant, focus group)
Understanding of activity goals
 • Well, it’s the idea, and we did this in the Forest Service, as well, when you had, from our research bureau, was getting research out to the -- to a broader audience, now how do you do that? You know, and one of the things is to direct the researcher to pick topics that are going to direct you toward a certain goal. (participant, crowd-voting)
 • In terms of where the emphasis should be, but so many of the questions had ... I mean, they were appropriate questions and appropriate priorities. Yeah, it was clear enough. (participant, Delphi)
 • Well, as I understood, it was to identify research topics which ordinarily would be identified without the kind of participation that this particular study included. (participant, crowd-voting)
 • It seemed to me that they were trying to decide where to focus their study. Because we were asked questions that, you know, gave opinions as to, you know, what should be followed up on, what type of information. (participant, focus group)
 • I understood the focus to be that you would collect information from patients, a large number of patients, and would assemble therefrom information that would be helpful to the medical profession in training new people or giving feedback on what might better help their patients. (participant, focus group)
Process measures
 Logistics• The electronic thing appealed, but, again, I, I didn’t get, I didn’t get the feedback. I don’t know if that’s the right word. The user interface satisfaction, I guess is what I’m going to say, that I would anticipate on doing things electronically rather than hardcopy. It just didn’t have that interaction that I was anticipating. (participant, crowd-voting)
• So, you know, it didn’t take up a lot of time. The parking was adequate because it was right across the street from the facility. So, yes, I enjoyed participating. (participant, focus group)
• I was surprised, correct me if I’m wrong, I almost had the feeling that you asked the same question several times. Am I correct about that? (participant, Delphi)
 Clarity of instructions & materials• I think, I think you did a really good job because like I don’t, I don’t, I’m a complete dinosaur and I don’t have any you know, I don’t have anything with push buttons, I don’t have a computer and so you got to me and without all the modern conveniences cause you talk to me on thephone and you sent me a letter with really easy instructions. (participant, focus group)
• The way the questions were set up. Maybe if the instructions had been clearer, then the process would have been easier. (participant, crowd-voting)
• I’ve been in the medical business, and I’m a teacher. I’m a toxicologist. I’m used to medical jargon and stuff. I wonder how many of the other participants were, but it is difficult to try to get the all-knowing, all-reaching question out there that’s understood. (participant, Delphi)
 Representation• Maybe we should cut down some selection. You don’t need do it if you rarely have back pain. Or you did have back pain and you don’t have back pain anymore. Or something like that. (participant, crowd-voting)
• I also questioned why I was really a part of the survey. I was asked, so, therefore, this kind of thing I have no problem doing. My back issues are minimal. I’m sure you’re dealing with people for whom it’s a life changing event. Mine is not. (participant, focus group)
 Transparency & accountability• I think the online activity, because it was just like -- I mean, you could switch the comments on there, and you could hear other people’s comments or read other people’s comments, too. So I really liked the online survey. I liked that one. (participant, crowd-voting)
• That’s really important, and you’ve done that, though. I’ve read responses that you sent me about three, 4 months ago, and I found them interesting. You know what, I even found it really interesting that one of my responses was in it. (participant, Delphi)
Role of patients in research
 Importance• A lot of surveys, I participate in a lot of surveys and activities that provide feedback and information because I think it’s critical to get it from, shall we say, the horse’s mouth instead of guessing for researchers. (participant, crowd-voting)
• Yeah, because, like, it’s like we’re the ones that, we’re the ones that are being, you know, being worked on, and so we should have some kind of say in what you’re working on. (participant, focus group)
• That’s one of the reasons why I can respond so strongly to this is because to me it’s stupid to spend a lot of money and never ask the people that it’s going to affect. (participant, Delphi)
 Tasks• Well, they could, they ultimately could be one of the deciding factors as to whether something is funded or not. It’s all eventually about whether you get funded. (participant, crowd-voting)
• By involving them as much as possible, even in framing the questions and the focus of the study. As I said, I think a lot of times research leaves out the very people that are most affected by the results of it. Anytime that they can be included from the very beginning of what’s even going to be studied is important, and that along the way as well. (participant, Delphi)
• Maybe all patients should be given some kind of survey based on their level of injury. About their experiences with this and maybe things that they did that helped alleviate the pain besides what the doctor said. I don’t know if that’s a good answer, but that’s all I can come up with. (participant, focus group)