Table 2.

Themes, subthemes and selected quotes.

Theme and subthemes	Quote
Improving patient engagement within the SCNs Inclusive recruitment strategies Supports for engagement Views on respectful engagement involvement in decision-making	“I sent a letter in about 2 years ago to Dr. and I said, “you know, I've really enjoyed being involved but, you know, you need to get more members of the public involved, more than just me.” …, not 20 but you know, maybe- they probably have two or three now, members of the SCN, or maybe more…part of the core committee, so I think…those are the things that I would potentially change” (PFA3) “We have a real passionate group, right? And after 2 years I feel like a little bit of momentum has dropped. But I mean it was COVID-19 for goodness sakes, right? … we did recruit four new advisors in January so we tried anyways. But we still—we want to get a sweet spot of about 15 where at last half of them attend a meeting, right, whereas right now if we have 11 then we only have five or six attending… And I mean not that that’s bad it’s just, you want more voices, right? And people aren't responding, they're not great at responding to emails. Even though we send out lots of opportunities sometimes it’s just that reach out directly to the person that works best.” (Staff4) “One of the first things I did was develop a resource for Skype because our—I think AHS either was in the process of or didn't have one that I felt was kind of user friendly. So I developed that and actually shared that among the networks to say hey, here I have this Skype for patients and families to use. We developed an orientation PowerPoint, so it really—once they've been fully onboarded then we do this orientation and it’s probably 45 min presentation and discussion and questions. And it really talks about all the three areas in the network …and it introduces who the network is all this kind of main subject areas… The other thing we did was a resource, it’s like a dictionary…a glossary of terms for our network.” (Staff4) “The ones [that] are tokenism, and that decisions had already been made and they were just looking to tick a box on a form to say “yes, we had patient engagement”. And although there was some effort…I can spot a project to nowhere and I'm just a bobblehead as a patient advisor after one meeting,…At the beginning had more of those type of experiences, and as you gain experience and knowledge of how AHS works, you know to pick and choose what projects you think are realistic and that will actually move forward.” (PFA7) “The other place I think that I want to get to is, as an SCN and not just me personally, is to really kind of really push the envelope more in terms of our involvement of our patient advisors as leaders within the SCN. So to really try to get them to be a bit more leading in terms of bringing their ideas forward and getting sort of at the end of that IAP2 spectrum really coming up with the ideas and being able to run with them and work on it from that perspective. And I think some people are ready to do that, especially the PACER grads. But I think I'd like to see the whole community move that way.” (SCNLead7)
Communication with PFAs Role clarity and expectations Communication strategies	“There was a long-time patient or family advisor who wanted the network to work on something that he was interested in. But it didn't align with operational priorities so it never rose to the top…We can't do everything and for him to be meaningfully engaged… we and he decided that how he contributed to the network would change. And he came more focused on other contributions to research and to providing inputs occasionally to surveys that we would do, and certainly continuing to receive communications, etc. But when there isn't that alignment, we can't force it.” (SCNLead2) “Staff would call us to talk about the agenda… review the agenda…so we were really kept informed as to what was going on” (PFA6)
Work environment Comfort to contribute Adapting to virtual involvement due to COVID-19	“I remember when I went to my very first meeting, I was so nervous because I thought like they would be like “you interlopers, what are you doing here,” kind of thing. I thought we would stand out and be like really weird, and it was completely the opposite. It was incredibly welcoming” (PFA2) “I was on a side project…the person who was leading the project, …would ask a question. And one time – one question, the physician would answer first…high up EMS people would answer, and then she would ask us as family patient advisors. The next question: she’d flip it and she’d ask the EMS guys first, then the family patient advisors, then the physician…Never have I felt more like an equal than I did on that project.” (PFA11) “It depends on the meeting, like once it’s too big, you kind of lose people and everybody is drifting off, but for smaller engagement it’s- it’s actually very effective. It’s good for the environment, because there’s less travel, and it’s good for infection control, because before the pandemic, if we were getting people together face-to-face, if one person decided to go with a cold, they probably would leave some of that virus behind. So, it’s the future” (SCNLead4)
Motivations to sustain engagement Relationship-building Feeling valued Learning opportunities Having an impact on the healthcare system	“I've also benefited from the relationships I've formed with people and from the respect I've gotten from that… it is satisfying to know that your voice is appreciated and that really is – really is the way – why I was involved and why I keep being involved with the research.” (PFA8) “I wanted to commend the SCNs in their ability to make patients feel like superstars. You know, to help us recognise that we are as important as the head of Nephrology. And there’s a huge ego boost in that and that ego boost is necessary in order to give people the confidence to speak up.” (PFA5) “That’s been the joy of the SCN as well. Is really learning. The physician and medical experience which I want more of, as well as hearing other patient partners and building that network. I've had this opportunity and I've always been a lifelong learner, so every time I attend a presentation, every time I’m part of an event, I'm learning more about research, I'm learning more about kidney function, but I'm learning more about people even more important to me, so it has been really valuable.” (PFA4) ‘I’ll admit, I was a little—not suspicious, but fatalistic at first, thinking, yeah, will it make any difference? But the more I found that they really took patient complaints or suggestions positively, and I saw things actually being enacted that made a difference. It kept me going and eager to do more.” (PFA12)

AHS, Alberta Health Services; EMS, Emergency Medical Services; PFA, patient and family advisor; SCNs, Strategic Clinical Networks.