SCI Care: What Really Matters
SCI Care: What Really Matters
In conversation with the Praxis team at ISCoS 2023
In this bonus episode, we spoke with Bill Barrable, Vanessa Noonan, John Chernesky and Barry Monroe of Praxis as they discuss the 62nd ISCoS scientific meeting and the role of their organisation in setting best practices for managing spinal cord injury and rehabilitation.
They also discuss the challenges and strategies of involving those with lived experience in planning and participation programs, particularly in regions with prevalent SCI.
We hope you enjoy listening.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
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The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Welcome to our bonus episode of SCI Care. What really matters the Edinburgh Conversations. I am Dr Ali Jumous, the President of the International Spine Court Society. You are about to hear a selection of interviews recorded live in Edinburgh during the course of the 60 seconds ESCO scientific meeting. Each bonus track will have discussions with speakers, delegates, partners, ESCO's committee chairs and teams attending the ESCO's 2023. Join us to find out what the hot topics of the day are within SCI Care. We hope you enjoy listening.
Speaker 2:Well, yeah being here with Praxis, with Vanessa Noonan, bill Barabull and John Trineschi, myself, barry Monroe. I'm excited about it and I'm not a member, but I am now going to become a member because I see the importance of the networking Coming out of COVID. Vancouver was a great beginning of something great to happen, and I just find that we built off of Vancouver last year and just seeing the different people from all over the world getting together but, more importantly, the passion of just trying to help people with spinal cord injuries and not be afraid to say things that might be controversial in some meetings. So I think that's what gets me in and, you notice, I've never seen a conference where we couldn't get into meeting rooms, where the meeting rooms were that full, and that's a new one for me. So that tells it's a great sign of things to come for this cause.
Speaker 3:I think too. For me, it's been connecting over coffee. I've just been meeting so many people and the topic of engaging people with lived experience comes up and then I'm like where are my colleagues John and Barry? You've got to get them involved in this conversation. And that leads to how can we share information? How can we collaborate? What emails are fewaring for people that are like yeah, you heard what that said, and I think it's the start of some new partnerships. So I'm super excited and I'm really looking forward to the next discuss and continuing to grow these networks.
Speaker 4:For me, certainly the getting to see the relationships, the people that you know already. But meeting new folks is huge For me.
Speaker 4:I missed the last discuss because I had COVID and for me to come here and see the evolution of the thinking towards involving people with live experience in the planning and in participation programs, but I still see opportunities to increase that and I think, to be perfectly honest I know it can be challenging to do that because of accessibility, but I think we as a community, as part of this discuss, we need to find new ways to do that and figure out some strategies to make the meetings more accessible, to really go to places where spinal cord injury is really prevalent, and that's Asia, africa or other parts of the world where accessibility is at a completely different level than it is in North America or even in Australia.
Speaker 4:I think it's not just that physical accessibility, it's the accessibility to knowledge.
Speaker 4:I think that's one of the things that, with COVID being all the negative sides to it, I thought that the democratization of knowledge, with the amount of online webinars and sharing of information in different formats, just really increased the accessibility of information.
Speaker 4:It's events like ISCOS, where you can come and you can hear some of the latest developments, and make it accessible to people not just physically, but also being able to be a part of hearing about these developments and these important networks. I have to say, vanessa, I think that's probably, to me, the biggest asset of coming to these meetings is that you meet people who, as Bill said, you already know, and you're maintaining those relationships and nurturing them, but also meeting new people that you might not have ever come across. Trying to keep up to date on everything that's happening around the world is more or less impossible, but you come here and you meet folks, like we met earlier today, who are working in similar ways and have knowledge that they can share and ideas that they can share that you didn't even know they were doing this, so it provides opportunities you wouldn't otherwise have.
Speaker 3:I think with the technologies, translating these materials are going to become easier and easier and then that will help spread the work that we're doing, because I think it's always got to be contextualized for that country and that language is really important. I think that was something else I was thinking today about how to make this information more accessible.
Speaker 2:I keep going back to the networking. There's an interesting phenomenon. I don't know if anybody's named it yet, but we've met people for the last three years but haven't met them physically. You've seen them on Zoom or Teams and now we're seeing them in person. So it's like a running start of new relationships and you can't replace getting together directly. I always like to say the deals that are made in the hallway with the networking. It's been that good and I love to see that. It's funny because you're cultivating these relationships and I just think of the amount of work that's going to come after each of these years. But that's fine, that's what it's all about.
Speaker 4:It's like most meetings you really don't know the value of the meeting until probably months and sometimes even years later.
Speaker 4:You know, john, you used the example of development of masking. It didn't germinate at a meeting but it didn't really actualize for a while after that, and who knows what's going to come from today's meeting. I've met several people that I didn't know before I arrived here and, wow, the work that they're doing is so closely aligned with what we're trying to achieve and we can't help but benefit from developing a relationship. I think, as an organization, practice has a huge role to play because of some of the best practices and standards and things that we've developed that we've been able to use to share and potentially translate into a workable model for other parts of the world, maybe less resourced countries, where the challenges in managing spinal cord injury and rehabilitation and reintegration into the community and thriving has added challenges. We're playing a leadership role in sharing that knowledge that we've created back home in Canada and trying to make sure that it's getting shared around the world and adaptable to the circumstances of different countries.
Speaker 3:I think part of that too we just came from a meeting is making sure that information is accessible to all the stakeholders, so the clinicians, but also in lay language, so that people with lived experience can be part of that conversation and use that knowledge to help advocate for more change as well.
Speaker 2:Absolutely, alright, absolutely.
Speaker 3:It was like sweet end.
Speaker 4:I do love a good absolute.
Speaker 3:That's what we needed.
Speaker 1:We hope you have enjoyed listening to our bonus collection of Edinburgh Conversations from ESCOS 2023. As always, you can listen to these episodes and all episodes from the podcast provider of your choice. If you have any questions or suggestions, we would love to hear from you. Email them to admin at escosorguk. Escos also invites you to the 63rd ESCOS Scientific Anyone Meeting from the 22nd to the 25th of September 2024. To save the date and more details will follow on the 2024 themes submitting an abstract and early birth registration. Thank you for listening.