Table 2 Additional interview quotes summarized by theme

1. PP individual and health-related challenges

1.1"First of all, these people have their own schedule too, it’s not their job so they really are doing this because they want to, often on a volunteer basis, sometimes because they’re paid. In the end they have their own schedule, they work eight to four, they have kids, some are retired. So, it can be difficult to integrate them because they don’t have the same schedule."(P06).

1.2"They have issues of not being able to get up on time where an appointment in the morning doesn’t work for them, it’s complicated. There’s also some who have cognitive issues, they’ll forget their appointment and we have plenty of strategies; we’ll call them four times so that they will be there, we will reserve their adapted transportation, we will go get them if necessary."(P05).

1.3"There is still, I think three hundred thousand people in Quebec who don’t have access to the Internet, there are I don’t know how many who go very infrequently, there are many who don’t have phones either, and ultimately these are orphan clients in a sense. It’s very difficult really, you must go into the non-profit sectors that help people who are in need."(P04).

1.4 “And we encountered some problems with patients regarding difficulties with technology, it made the deployment of the project difficult as well. Ultimately it led us to realize that we really need to recruit based on certain criteria because, yes, we want to be inclusive, but we also have a research project to advance, and we have funding constraints. Therefore, we need patients who possess a certain level of technological proficiency.” (P06).

2. Institutional barriers to PP involvement

2.1"The way to remunerate them, the administrative process, how much you pay them, it’s complicated, and there are guidelines, I know our partners do it with the support unit but for the hourly wage it’s not clear how I should be remunerating. If the person works, it’s clear we can match their hourly wage but at the same time it adds up. So, we need to reach agreements, but remuneration also requires a significant budget, so we must ensure that we have the budget to do it."(P02).

2.2 “There is a delay the moment I submit the applications. There are administrative and institutional procedures that all champions of engagement have had to go through; this is something that I have heard across Canada. All researchers have the same experience in Canada when they are the first to conduct this type of research at their university. They have to go through human resources, finances, and sometimes even the scientific leadership of the research center to ensure that everything is set up for machinery to function with the same culture and vision.” (P07).

2.3"I find it unfortunate that sometimes we must be kind of semi-dishonest just to make it work. It’s like sometimes I feel that the ethics committees have somewhat lost their role in keeping things ethical, personally, it’s a whole other debate."(P20).

2.4"Well I think it would be interesting to have a type of community of practice from the researchers'side and the users’ side, maybe something a bit mixed, I don’t know. It would be interesting because I find that really we’re shooting in the dark."(P20).

2.5"There was an attempt to find a solution to establish a status, that’s something in itself. This means that in our case, we didn’t have that issue because they’re not hired. It’s really more like we meet with him and then we provide him with that amount. […] It’s a bit troublesome because in that case there's a difference in treatment between people, but at the same time you think if he's on salary it's because he has a standard level, he has a foundation on competencies."(P18).

3. Challenges in genuine PP involvement

3.1"Sometimes you're told that you should do it, even though it doesn’t even make sense in your project, so in that sense, yes sometimes you feel pressure, and it's not really because I don’t agree with the purpose of patient partners, it's just that depending on the project, sometimes they are useful and just sometimes it just doesn’t make sense […]."(P13).

4. Collaboration challenges in research projects

4.1"I don’t want to frustrate them, I don’t want to be rude because I’m thinking if they don’t answer it’s because there’s a reason, it’s not just they decided not to answer. But at the same time, you tell yourself, well I still have things to get done, what do I do? Do I just move on as if they’re not there? It’s a question of at what point to be collaborative, participative, we took someone on who wasn’t available."(P18).

4.2"At a certain point it’s no better if the patient partner is just there and they feel like they can’t contribute or understand because, yes, you can do certain trainings beforehand but sometimes we’re really in the scientific terminology, or even in the search for funding that can be a bit heavy for patients."(P14).

4.3"It’s not clear, sometimes I got the impression, even in training, that there’s a goal, some researchers have this objective that patient partners emancipate through the experience. It’s like, yes, I want them to emancipate and everything but at the same time there’s a paradigm that is patient partnership."(P02).

4.4"We had this issue that you must not do an intervention. Well, I agree that it’s not a support group. But something between the two things; a research panel and an intervention. I think you have to find something in between the two."(P18).

5. Time constraints and representation issues

5.1"We are very structured and maybe people from outside won’t see that picture. I find it can be an obstacle sometimes. You have to explain to patient partners that if you want to participate in the project, the schedule is really important, you have to respect it."(P10).

5.2"I spent so much time making Teams and doing outreach that in the end I had so little time for the science part. Every time I told myself I really believed in it, but it’s so energy consuming that I lack time for the scientific aspect."(P19).