Table 1 Additional quotes

3.1 Methods and roles

3.1.1 “There were eight participants in our focus groups that we've engaged specifically around the pilot—the parent pilot study. The first focus groups have been eight participants, and we also alongside have what we call the parent panel, where we have anywhere between 10 and 14 parents that participate in the advisory panel. These are the two ways we have engaged families directly around how this works.” P1, Principal Investigator

3.1.2 “we've committed to hiring people who have lived experience onto our team, so that on a daily basis they're involved in all decisions, and they weigh in on every decision.” P7, Principal Investigator

3.1.3 “[…] as far as the advising part of the development—so that's where we were asking about the different questionnaire—the different questions and the different items. That was done via email, sending it to participants that expressed interest in developing it, and that was simply sent to individuals who would then—and then it was and Excel sheet where they could write in all their comments and then send that back to us.” P2, Research Staff

3.1.4 “I think one of the things we found out early on was that these families were very engaged via Facebook, and so we decided to try to meet them there […] We created a Facebook page. […] We're seeing some success there as far as making Facebook the go-to area for connecting with these families. I think that in and of itself, people have been very responsive, and it's really great to be able to interact with the families in, I think, a mode that they're on anyways. We're not asking them to get out of their usual-ish schedule, which is really nice.” P2, Research Staff

3.2 Impact of patient engagement

3.2a Impact on the study

3.2a.1 “A primary outcome measure is functioning, which as a youth contribution, one—the psychiatrist sitting out around a table, and healthcare providers were automatically defaulting to symptoms. Then, they went and talked to youth, and they're, no, it's not symptoms I'm interested in. I want to know how I'm doing on a daily basis. How's it going at school? How's it going with my friends? How's it going among my family? Primary outcome measures, that's a pretty serious decision. That was youth led.” P8, Research Staff

3.2a.2 “Our quality of life measures have come from some medical world of you had a heart attack, and now we're—can you go up and down the stairs? These are things that are—that often are completely irrelevant to young people who are, ‘I feel like killing myself because my boyfriend broke up with me, and my parents are telling me it's no big deal, and now I'm going to fail my math course, because I didn't study for the exam’.” P7, Principal Investigator

3.2a.3 “Yes [it has made a difference to the outcomes], because it's actually what youth wanted. It's actually relevant to our experience, because yeah maybe you might not necessarily, you can still be depressed, but if you're not going to school or something, is that helpful, or—do you know what I mean?” P6, Patient partner

3.2a.4 “Some of the feedback we've received around time of day, location, their interest in using technology, as opposed to coming in person. Some of those implementation questions have been—it's been very useful having parents provide us feedback there.” P1 Principal Investigator

3.2a.5 “Patients were involved on the [group] in terms of developing—okay, for example, what does a navigator do? What are their qualifications? If we're actually going to get the referral form to the patient, the patients told us, these are things that we'd like to see on it. These are the issues you need to be aware of with respect to health literacy and so on. They were involved in the consultation phase, in the development of the intervention, at every [group] meeting during the implementation, and so it began to tweak things as it rolled out.” P4, Research Staff

3.2a.6 “I think in terms of this case, they have been involved right from the start of the production of the knowledge translation tools which were used in this study, and then parents are investigators on the study, and have been at the meetings, and have been interviewed with me.” P5, Principal Investigator

3.2b Impact on the researcher

3.2b.1 “I think part of that success was really just being open to the idea of doing research differently, and for good reason, to push ourselves as researchers who have been involved in lots of projects over the years, but perhaps not with this level of emphasis and intentional design around engaging patients. I think having been through it, I can never go back. I think it just makes the research so meaningful.” P9, Principal Investigator

3.2b.2 “I certainly think that this population and interacting with them has opened my eyes to so many things, both in research and just in life […] it really can change your lens on how you view research, how you view your life, and may certainly – those participants have really opened my eyes to the reality of what it's like to have a child with medical complexity. Of course, I'll never have the understanding of it, because I've not lived it. But I certainly have a very deep appreciation for those parents, and that was through the patient engagement. I think it's one thing to read it on paper, but when you're interacting with people, it just—there's a difference—a significance, and it really makes you understand so much more what we're dealing with.” P2, Research Staff

3.2b.3 “This is something that we've developed far more for other initiatives since them, so essentially you can say that SPOR helped us understand the value and benefit of engaging with patients, and so with the other projects we've done things much better.” P3, Principal Investigator

3.2b.4 “And that's one thing actually, we did tell people like I always say to them, like, we're learning. I mean, if do things that are wrong, you tell me. Don't assume that, you know, there would that there's, like, I don't necessarily know how to do this. Well, so we're both learning. You're learning research and learning this partnership.” P10, Principal Investigator

3.3 Challenges

3.3a Identifying and reaching patient advisors and patient partners

3.3a.1 “For example, if the study was on a chronic disease, and there were community organizations around that chronic disease, then I could see that our involvement in engagement of their patients, and I could see how that community organization would be really directly key to the patient engagement. If we're talking about healthy children, a little bit more of that, community organisations that represent healthy children is a little bit, struggling to think about those.” P1, Principal Investigator

3.3a.2 “Then, it's like ensuring that you're not just looking for young people to say what you want to hear, but you're actually—you should be almost more interested in the things if they don't fit with what you already thought. That represents a different point of view.” P7, Principal Investigator

3.3a.3 “Yeah, and so again, there's more work coming out about how we should pay patient partners, because when we get funding, we don't pay out Co-I’s. It's our job, but then again, it is our job, whereas their family. Certainly, we always pay gas, and childcare, and I don't—coffee carts, meal carts. To pay them money? I've never put that in a grant yet, and what should that be? What should an honorarium for a patient partner be? […] Yeah, so we're still working that out, and that's—I don't know. I don't have the answer.” P5, Principal Investigator

3.3a.4 “I don't know if this has come up in your process to date, but even—I know there's a lot of discussion out in the patient engagement world just around sort of how do we properly recognize these essential partners in research? Is it—what are we doing to do that? Does compensation need to come into it, and how do we make sure that people are being compensated and recognized in a way that is most appropriate for their oftentimes very involved contribution?” P9, Principal Investigator

3.3b Time-related challenge

3.3b.1 “You've got to move a little bit slower sometimes.[…] We knew that we were going to be doing this from the get go, so it was worked into our timeline. I don't think that was a as big a deal as much as getting REB approval, some of the other stuff. This is a slow process anyways. It wasn't such a major barrier. Sometimes you just have to relax a little bit and take your time on making decisions, but do it anyway, because of institutional mistakes.” P8, Research Staff

3.3b.2 “I think for us particularly with the population that we are trying to engage with, like I mentioned, they just don't have a lot of time, which is absolutely fair, since they are—they're very busy managing their child's health, managing their family, managing their own life. It's—the challenge is trying to engage them, even though they don’t have a lot of time, […].” P1, Principal Investigator

3.3b.3 “I think it's true for everyone, but my area's youth based, see as being especially important to youth, because the demands on their time, their developmental context, the tasks with which they are confronted over time, and so they may really want to be involved, but if they're in the middle of their grade 12 year where they're really focused on trying to get good grades to get into university, it's not appropriate to ask them to make a big commitment.” P7, Principal Investigator

3.3b.4 “[Interviewer: Yeah. Yeah, and how do you build that rapport?] Being open, a little bit, giving a little bit of time out to chat with them about what matters to them. Inviting conversation, not being the ivory tower dry scientist that they can come down to a real person's level.” P8, Research Staff

3.3b.5 “Sometimes it was a matter of meeting with them individually and talking about what's coming up at the meeting, but also providing really practical supports, like ensuring transportation, taxi, if they needed it. Made sure that all of our meeting rooms were physically assessable…” P4, Research Staff

3.3b.6 “I can't say that this [relationship] is something that was built for that project. This is something that we built over time that previously existed and we just continued to nourish so to speak.” P3, Principal Investigator

3.3.c Maintaining engagement

3.3c.1 “We really from the very beginning were sitting together, and the youth changed over time, […] our youth became not youth. At some point, you're, oh right, you are now 10 years older…and the youth were trying to understand that you're actually no longer youth.” P7, Principal Investigator

3.3.c.2 “I think some of the challenges we've had, it's a long project and with the randomized control trial nature of it, there's a lot of protection and oversite with the data to ensure the credibility of the trial. I think for me, maybe that it's something that we would want to consider moving forward is just sort of the lulls in time in that data collection phase where there's passion and energy from patients to be engaged, and then it's just trying to think collectively between all of us on the project, including the family partners and family leaders. What are those components that this kind of data collection where we can all continue to be excited and engaged along the way.” P9, Principal Investigator