Table 2 Themes and sub-themes about the Foundations in Patient-Oriented Research development and pilot process derived from the second focus group session

Sub-theme: Drawing on expertise from all stakeholders

Quote: “I would’ve never been able to create this content by myself.” [Participant B, Project Co-lead/Developer/Facilitator]

Quote: “Without that team approach where we all brought our expertise, I don’t think we would’ve had training in many of the provinces.” [Participant A, Project Co-lead/Developer/Facilitator]

Quote: “I also think that really helped with the standardization of language.” [Participant B, Project Co-lead/Developer/Facilitator]

Sub-theme: Having shared experiences

Quote: “It was great to be around like-minded people… it helped me feel confident in delivering the training after.” [Participant E, Facilitator]

Sub-theme: Having learning experiences

Quote: “The co-learning I think not only applied during the workshops when we were facilitating them with the patients and researchers and other stakeholders, but I think we as a development team, we were learning as we went along.” [Participant C, Project Co-lead/Developer/Facilitator]

Sub-theme: Building relationships

Quote: “By just going on the [central website containing the list of sessions] or by contacting [a project co-lead], those collaborations occurred, which I think is a key piece that we need to continue – that infrastructure is still there and people in their local area.” [Participant B, Project co-lead/Developer/Facilitator]

Sub-theme: Having shared experiences

Quote: “Getting people … in a room together, learning face-to-face and the power of that in terms of breaking down barriers, tackling the issue of power imbalances that can exist on a research team.” [Participant C, Project Co-lead/Developer/Facilitator]

Sub-theme: The usefulness of story-telling

Quote: “What I found was really helpful and was the balance between partially lecturing but especially the stories and the examples because they bring it across. When we think of what we remember later on, we picked up a few key notes maybe from a lecture, but stories, examples, especially presented by different people, that really sticks in the memory.” [Participant B, Project Co-lead/Developer/Facilitator]

Sub-theme: Catalyzing relationships to conduct POR

Quote: “Co-learning is the intervention that builds teams.” [Participant C, Project Co-lead/Developer/Facilitator]

Quote: “You could almost physically see people relaxing into themselves and the relationships … that came out of the co-learning format.” [Participant F, Patient co-facilitator]

Sub-theme: Patients feel like a true partner by co-facilitating

Quote: “Being taken serious and being listened to is what I mean by moving past tokenism and being, really, a full member of the team.” [Participant G, Patient co-facilitator]

Sub-theme: Building relationships

Quote: “…not just in the facilitation, but then discussions around the course afterwards and exchanges [about the] experience, the interaction in-between different patient partners.” [Participant G, Patient co-facilitator]

Sub-theme: Co-building as a result of the initial workshop

Quote: “I think a really great example of [the co-building process] was the initial workshop that brought people together to talk about what should be covered and what emerged from that workshop around the importance of this idea of co-building and co-learning.” [Participant C, Project Co-lead/Developer/Facilitator]

Sub-theme: Having common goals and/or personal motivation

Quote: “People on this group started working out of personal interest, not because we were dictated to. So we came to the table out of desire and interest in patient engagement, not as a ‘thou shalt’. And I thought that that really may have had an impact on how well the team worked together as well as how the modules were created.” [Participant B, Project co-lead/Developer/Facilitator]

Sub-theme: Adaptability/flexibility of the delivery

Quote: “I loved that we were allowed to do that in that we didn’t require teams to come to the training, it was just open to anyone who was engaged in POR or wanting to be engaged. And you didn’t have to be attached to a team, but yet if you were we strongly encouraged it.” [Participant B, Project Co-lead/Developer/Facilitator]

Quote: “I think different people mentioned the desirability of customizing the curriculum for local delivering, like being able to give local examples… just facilitator preferences. I know, for example, for Module 2 I had different preferences around something as simple as slide transitions and that was kind of again butting up against the need to maintain integrity of the curriculum and also, you know, locking it down for the pilot.” [Participant C, Project Co-lead/Developer/Facilitator]

Quote: “I really liked as well that we were able to pilot via video conferencing with one of our rural areas.” [Participant E, Facilitator]

Sub-theme: Co-facilitation with people with lived experience

Quote: “I really felt as a partner in the co-facilitation. I felt heard and valued in terms of discussions.” [Participant G, Patient co-facilitator]

Sub-theme: Validating the course content through evaluations and feedback

Quote: “The pilot collected the perspectives of the different learners, and I think that was really important to [incorporate this].” [Participant D, Project co-lead/Developer]

Quote: “[The] evaluation framework that we used during the pilot process [was] exactly what we built the revisions upon.” [Participant D, Project co-lead/Developer]

Quote: “The feedback we got through the pilot – we can actually use some of the feedback almost as marketing when advertising the curriculum.” [Participant C, Project co-lead/Developer/Facilitator]

Sub-theme: Credibility of the systematic development process

Quote: “I liked the reference group idea … although … [it] morphed or changed over time, I still think it was a great way to … credibly build a project together across the country.” [Participant D, Project Co-lead/Developer]

Quote (about the train-the-trainer workshop): “It was great to be around like-minded people … it helped me feel confident in delivering the training after.” [Participant E, Facilitator]

Quote: “I think we might’ve seen in the past and in other areas of our work where something’s evolved and that’s just handed to the world as-is, but this was a very well-thought out way of really, piloting it.” [Participant F, Patient co-facilitator]

Quote: “I think the pilot was really necessary for two reasons. One: for improvement, and the other one for credibility.” [Participant C, Project Co-lead/Developer/Facilitator]

Sub-theme: Improved understanding of POR

Quote: “The knowledge [exchange] that has happened … testified to the changes in what we thought and what we saw in the people around us.” [Participant A, Project co-lead/Developer/Facilitator]

Quote: “There’s [anecdotal evidence] suggesting that groups and teams who took the course actually fared better than those who did not when it came to getting funding or when it came to their [success] down the line.” [Participant D, Project Co-lead/Developer]

Sub-theme: Widespread uptake of the curriculum

Quote: “I think the impact of the training has been wide-spread… On one hand, you have more people who are knowledgeable of patient-oriented research and on the other hand you also see groups developing further [training].” [Participant A, Project Co-lead/Developer/Facilitator]

Quote: “We achieved a national resonance with this foundational curriculum and that’s not negligible.” [Participant A, Project Co-lead/Developer/Facilitator]

Sub-theme: Understanding patient engagement within the context of POR

Quote: “What I found just super rewarding is working with the participants and to see that they start to see the value of patient engagement, especially with the exercise with the research cycle and starting to understand where patient engagement fits in.” [Participant E, Facilitator]

Sub-theme: Researchers/patients skills in PE

Quote: “It struck me how much this is new for the researchers. And that’s because researchers are trained to do research in a certain way, especially in health sciences, and, you know, participatory action research is not among the tools in their toolbox.” [Participant A, Project Co-lead/Developer/Facilitator]

Quote: “It’s not just telling a story; it’s also analyzing it and being part researching themselves in a way. [Patients are] inventorying what they’ve learned from experience, and also finding ways to articulate it and finding ways to make it meaningful in the exchanges and the decisions that are made in a research team.” [Participant A, Project Co-lead/Developer/Facilitator]

Sub-theme: Evolving concept, knowledge and skills

Quote: “We’ve all deepened our knowledge of what POR is, should be, could be, etc.” [Participant A, Project co-lead/Developer/Facilitator]

Quote: “Another example of our evolution of understanding was, it started with that initial workshop back ... when we decided that the curriculum needed to be about more than just patient engagement. That patient-oriented oriented research, yes patient engagement is foundational to that, but, the emphasis on the multi-disciplinarity idea and the bringing together of all the stakeholder different perspectives in order to do ‘patient-oriented’.” [Participant C, Project Co-lead/Developer/Facilitator]

Quote: “I knew about patient engagement, but I really didn’t know that much about patient-oriented research. But by being a part of this, I was able to tap into experts in the development of the training … [that] was really key, because they were able to share for Module 1 and Module 2 what was the health research side, broader than just patient engagement, and I felt like that for me enabled me to actually deliver the content.” [Participant B, Project Co-lead/Developer/Facilitator]

Sub-theme: Coordination

Quote: “Just the level of planning and team building and check-ins that were required for facilitating and co-facilitating, and supporting the patient co-facilitators.” [Participant E, Facilitator]

Quote: “That is one of the characteristics of co-development; you have to build in affordances for unseen things, unpredictable things.” [Participant A, Project Co-lead/Developer/Facilitator]

Quote: “The execution of it required a lot of follow-up … to get people to share … the planned sessions that they had.” [Participant D, Project Co-lead/Developer]

Quote: “The [challenge] was more synchronizing all the different SUPPORT Units and SPOR Networks.” [Participant A, Project Co-lead/Developer/Facilitator]

Sub-theme: Resources

Quote: “I had some frustrations around the amount of time it took us to accomplish what we’ve accomplished, which has been a lot, but it’s also taken us three years to get here.” [Participant C, Project Co-lead/Developer/Facilitator]

Quote: “So I would argue that a lot of resources [needed to complete the project] have been volunteer.” [Participant C, Project Co-lead/Developer/Facilitator]

Quote: “I was thinking about how to … shorten the timeframe for the project and I … think more protected time to do something like this is necessary.” [Participant D, Project Co-lead/Developer]

“Going forward for sustainability you need to have resources put in place to have the continuous refreshing and coordination of something like this.” [Participant D, Project Co-lead/Developer]

Sub-theme: Commitment

Quote: “I would say my experience as a train-the-trainer leader, the people who had passion actively engaged in the train-the-trainer and there were a few people who were told to attend and they didn’t participate actively.” [Participant B, Project Co-lead/Developer/Facilitator]

Quote: “I don’t actually think that it was more resources that were necessarily needed as much as we needed [more] leadership commitment [to make the project go faster].” [Participant B, Project Co-lead/Developer/Facilitator]

Sub-theme: Communication

Quote: “There could’ve been a bit clearer, upfront statements on a website to talk about the curriculum and … have some clear messaging about what it is and what stage it’s at.” [Participant D, Project Co-lead/Developer]

Sub-theme: Tension between the freedom to adapt content versus maintaining its integrity and core messages

Quote: “That was one of the things in the train-the-trainer workshop we … outlined; what was fixed and what was flexible … people knew that they had some ability to manipulate the delivery of it.” [Participant B, Project co-lead/Developer/Facilitator]

Quote: “Any frustrations that I’ve felt with the rigidity of slides, and this or that, I understood from a science research perspective that there needed to be somewhat of a consistent delivery across the country so that we could evaluate it and enhance it that way.” [Participant F, Patient co-facilitator]

Quote: “In general, people adapted the time, they didn’t minimize it to the extreme.” [Participant A, Project co-Lead/Developer/Facilitator]

Sub-theme: Existing beliefs about POR

Quote: “We’re up against people who don’t really value POR. I mean, if they’re not ready to meet as a team and go through training together, it says something about what they really think about POR.” [Participant A, Co-lead/Developer/Facilitator]

Sub-theme: Existing infrastructure

Quote: “I think having the initial infrastructure of the SUPPORT Units and having the research Networks in SPOR were critical to getting something as far reaching.”[Participant D, Co-Lead/Developer)