Table 3 AIM themes and sub-themes derived from interviews with Rick Hansen Institute (RHI) staff and Programme Advisory Committee (PAC)

PAC/RHI members reasons for adopting Praxis: the goals of Praxis aligned with members’ personal and/or professional interests

N/A

• “Considering that we really wanted to ensure that Praxis brought together the perspectives of a wide variety of stakeholders, and [my position being useful], and our desire to ensure that people with spinal cord injury had a strong voice in the proceedings, it seemed only natural that I should be part of the pro-planning process”

• “[I joined] because I thought what they were trying to do was important. And I wanted to ensure that our community, like rehabilitation community, got to play an active role in the process”

Adopting the unique format of Praxis: there was a mixture of hesitance and willingness across a variety of individuals to adopt the unique format of Praxis

Hesitance to adopt the format: the PAC/RHI members speak of the unease some stakeholders had with the format of Praxis

• “And a number of these individuals were quite hesitant to really be completely engaged, like okay well they’re willing to come and speak but they didn’t see themselves as being advisors to the programme and subsequent activities”

• “[The Facilitator] opened by saying, ‘Okay. So, we’re not expecting PowerPoint. And if you do PowerPoint, we’re talking about three or four slides and we want discussions and case review. You are to bring your wisdom and experience.’ And there was complete silence”

• “But with sponsors, it was really tough to explain it. We did not get sponsorship because we would not provide a standard exhibit space because we would not allow them the chance to address the delegates and do sunrise breakfast and things like that”

Acceptance of the format: the PAC/RHI members speak of how some stakeholders received the Praxis format

• “What I’m so humbled by is the fact that they were willing to join in and go along with something that they couldn’t feel. They didn’t have any evidence, they didn’t have any examples and I just had so much admiration for the fact that everyone just dug in and did the planning without any idea of how this would turn out”

Interactive format: organisers spoke of their satisfaction with the resulting collaborative format of the conference.

N/A

• “And in that, sort of when you were thinking about speakers then, one of the key things was to find people that were engaging, that weren’t just necessarily experts but could also engage a large audience”

• “[Yes], that comes into my decision making”

• “So, we did that [seating charts] for the conference, and I think that was a very valuable exercise because it forced people to sit with other people who [they] would not normally be sitting with”

Snowball reach: the invitation process occurred through the use of a snowball method

N/A

• “Organically. I say that evolved. So, we didn’t have, at the beginning, a strict criteria. We were starting from nothing. So, it became friends of friends of friends”

The action plan was difficult to create/deliver: the vastness of the information within the action plan made it difficult to formulate and subsequently deliver

N/A

• “I think it comes down to planning and resourcing it, really insufficient resources to get the action plan out in that time frame, considering the barriers to actually getting the information together, synthesizing – I don’t know if we thought we would get so much information from the participants either. It took a lot of work just to synthesize it”

• “It [the action plan] is so diverse and so many recommendations …. there’s a lot of themes, there’s a lot of work”

• “Just saying I think some of the aspirational goals, they’re very lofty – to me, some of the things that are in Praxis are 10-year goals, which I don’t disagree with the aspirational goals, but I would have liked to have seen some more near-term, pragmatic, what will we achieve?...”

Iteration throughout planning: there was a lack of clarity of the goals and format at first, leading to a variety of planning challenges

N/A

• “And then ultimately, personally I wasn’t quite sure what the goal was for the meeting … We need to know what was [the] goal [is] in order to provide the most constructive input”

• “I think the conference that we ended up with was probably very different than what was originally envisioned when we started. And I think that’s a positive thing, I think it evolved in a very positive way”

• “I don’t know if there was a real plan for the conference. I think it was really a progression, and I can’t even say who got us to the point where we needed to focus on solutions”

Lack of resources: a shortage of time and staff to plan praxis

N/A

• “I think, you know, it was internally, it was a lot of work you know, I think everybody involved put in a lot a lot of hours, they put their soul into it, and by the end they were utterly exhausted …, I think that there was a significant amount of burnout in the immediate aftermath of the conference. Just because you know people were working beyond capacity for so long in order to get the conference going”

• “I think the process felt rushed at times, the planning process. I think once we got on that track, there was limited time to get it done … It did feel like a tight time frame considering that it wasn’t something that a lot of us had done before”

Selection of speakers: the selection of speakers was difficult due to the uniqueness of the format

N/A

• “The challenge of finding speakers is that they were disorganized in the beginning and so if you want the best speakers, their schedules are very tight and so you really need to have you know, a lot of time to be able to get the people that you want”

• “I think that you know the speakers, that some of the speakers were chosen early on and perhaps were not the best fit in the end”

Accessible conference: difficulties associated with the planning of an accessible conference

N/A

• “So, I think my most important lessons apart from all the conference stuff about who I’d use and who I wouldn’t use is a warning that the minute you say it is accessible, you are opening a Pandora’s box. And it is going to cost more and it’s going to take more thought and more time. And I don’t only mean accessibility for people who have disabilities, I mean accessibility in allowing everyone’s voices to be heard”

Strong leadership: it was helpful to have strong leaders who could ensure buy in from the broader spinal chord injury (SCI) community

N/A

• “We started to feel more comfortable … we certainly were feeling more valued in our input … [the leader] knows more of the big picture and … had the ability to make decisions”

Value of facilitation: Facilitators were very important in the planning of the conference to ensure implementation was successful

N/A

• “Definitely having the facilitators there was a really effective piece of the planning. And in the product of the actual meeting …. I think they were probably the neutral people. If a topic came up that was getting off topic or was decided ahead of time that we’re not going to be discussing this, then they stopped that immediately so it didn’t take time away from what we were trying to discuss”

• “At the meeting itself, they were wonderful facilitators. They really were. And just watching them perform and do their thing. [They] were making sure that the presentations seemed to be ending with a clear message or wrapping up in a certain way. And even if it hadn’t all been planned ahead of time, they were making it happen on the spot … And they did it with very good cheer if you will”

Initiatives to unite consumers: extra steps were taken to ensure consumers felt united before the conference

N/A

• “I know the organizing committee made sure that there was a consumer at every small table”

• “The initiative [was made] to arrange a networking meeting for all of the individuals that fell under that umbrella of consumers to get together in an immediate proceeding before the conference actually opened. [The motive was] to bring everybody together to get to know each other and develop networks, but [they were also] charged to speak up, to get involved in the conversation, to not be intimidated by any of the other attendees and to make sure that they knew that their opinions were valid and that it was important that they make themselves be heard and be part of the conversation, a part of the solution that Praxis was trying to achieve”

Exceeded expectations: organisers spoke of how the conference exceeded their initial expectations

N/A

• “So, I thought that was good [table discussions], we needed to have those discussions and I was somewhat hesitant as to whether or not you know, those discussions would lead to anything in the future”

• “And, you know, and then as I say, the conference I think more than lived up to everyone’s expectations”

• “In the end, I think the meeting came off as well as expected, and in some cases, better than expected”

Disappointing long-term impact: organisers spoke of how they were disappointed with the impact of praxis long term

N/A

• “There’s also probably a lot of people that went back to work and got caught up in their everyday challenges”

• “I’ll just say from my very arms-length perspective I haven’t really seen anything moving forward as a result of Praxis … And, I don’t know that that has happened”

Recommendations post-Praxis: suggestions for fostering impacts of Praxis

Leadership for implementation of the action plan: there needs to be coordination of who is in charge of the action plan that results from Praxis

• “I think that something like the Rick Hansen Institute … is the only organization that is positioned to make something like that happen [another Praxis type meeting]. Just because of our sort of neutral position amongst all of the key stakeholders and our key role as a network development organization. I think that if solutions were to be developed in a sort of collaborative fashion, that it would be instrumental to have RHI sort of facilitate that”

• “You know, one of the problems with moving things forward is you need a champion to say, ‘this is something that I want to see happen’. So, really you know I think the challenge is that if you want these things to have an impact, somebody needs to want to make an impact”

Continuing to meet face-to-face: it is important for these face-to-face meetings to continue happen to foster the impact of praxis

• “We’ll probably have another Praxis-like conference and we will probably have some smaller Praxis-like conferences as well … Yeah, I think that what would be perfect actually is to reconvene and talk about you know where we are, where the gaps are and you know following these initiatives - how can we make you know this action plan that we have?”

• “But you know, you can read as much as you want and you know you can read policies or you can read grant applications which require consumer engagement. But unless you are in a room with other consumers I think the most powerful thing was having this face-to-face with consumers and listening to their points of view”

Prioritising and creating short- and long-term goals: there needs to be clear short- and long-term goals created and priorities must be set

• “But I would like to think that RHI over the next 5 years would use the action plan developed from Praxis as a basis for developing its business plan and try to identify some of the challenges in the action plan and look to try to find solutions for them”

• “I think the development of the action plan of as well or the action plan itself will be key in RHI’s business planning moving forward. It’s a list of things that the field is not doing well right now, the action plan or the field needs. And RHI’s role as an institution is to fill gaps. And if we’re not following the action plan, I think we’re failing the SCI community”

• “I think it might be better to do smaller scale, feasible things than have people join a successful group, as opposed to waiting for a larger group to coalesce on a common thing”

Involving consumers: SCI consumers must be involved to foster the impacts of Praxis

• “So, packing into the SCI community to share data, disseminate data and information and to gain input on the design of trials or the design of implementation. Actually, having them [consumers] as partners in all of these different aspects could really, I mean and they can enhance recruitment for other trials. They can spread the word about clinical interventions that are trying to be implemented into hospitals or clinical care. They can be influential on their communities about that. I mean there’s so many ways that people with spinal cord injuries can be helpful”

The impact of praxis: the impact that praxis in the field of SCI research

Praxis as a movement: Praxis has become a movement in SCI research and has earned itself a reputation

• “Praxis has evolved, like it was first a description of what RHI does, then it’s the name of a conference, and now it is this whole movement. So, I can imagine that if in this movement moving forward, there will be a need [for] more meetings like Praxis. And you know we might call it Praxis 2020 or whatever, but the end the meeting is not the end all and be all, right? It’s the movement, the collaboration, the ethos that brings a big value and the conference is just one part of it”

• “So, my expectation was that the conference, I mean the discussions of the conference were going to result in the action plan. But what unexpectedly has come out of this is that they had these spin-off meetings that happened. Some that had already been planned, but some that happened as a result of Praxis”

Fostered lasting consumer engagement: Praxis has resulted in greater, ongoing initiatives to engage consumers

• “And the North American SCI Consortium that came out of [it], that I feel is one tangible thing that has come out”

• “I think [we] were pretty successful at getting consumers there. I think [the sub-meeting at praxis for consumers] was successful, and I think that has been the start of a lot of joint effort nationally and internationally with the consumer group, which is part of the Praxis action plans. I think that’s been good”