Consumer Engagement Lead, Antonio Vecchio, shares a presenter’s perspective from the recent International Spinal Cord Society (ISCoS) Annual Scientific Meeting, where he co-presented two workshops with international colleagues.
This year saw ISCoS hold its 60th annual scientific meeting, where worldwide delegates from many disciplines came together virtually. Meetings such as this allow researchers, clinicians, and organisations to showcase the diverse range of work being done to enhance the lives of people living with spinal cord injury (SCI). Personally, it was exciting as it was my first ever attendance at a spinal scientific meeting, not only as an attendee but also as a co-presenter of two workshops.
As a first-time attendee, my initial observation was the impressive diversity within the presented ideas. The range of topics across the presentations and posters varied from the work being done across acute care and rehabilitation, advancements in bladder and bowel care, respiratory health, the use of telehealth and other technology, to name a few with such a range of ideas it would be difficult to name them all here. As a consumer living with a spinal cord injury, it gave me excitement and hope to see such diverse ideas presented.
Although once again there were many, one of the highlights for me was the Sir Ludwig Guttmann Lecture presented by neurosurgeon Dr Charles Tator. I was fascinated to hear about his observations of achievements in SCI as a researcher since 1971. Such achievements include the improvement of medical management, including intensive care post spinal injury. He spoke about the work being done in stem cell regeneration within the spinal cord and spoke hopefully about the potential this holds moving forward. As an attendee, it also gave me a moment of reflection as it resonated with me as somebody who has been involved in disability sport. Seeing the influence that Sir Ludwig Guttmann has had in the world of spinal research and his role in what is now the Paralympic games.
Some of the other presentations that resonated with me was:
- The use of virtual reality headsets to educate people with newly acquired SCI injuries in the Netherlands.
- A discussion of measuring patients beliefs around their spinal cord injury and how these perceptions can be used in rehabilitation.
- The findings from the International Spinal Cord Injury Quality-Of-Life Big Data Set and how quality-of-life could be measured for those living with SCI.
One of the most exciting things, however, was the amount of consumer-led presentations. One example of this was the work in North America by SCI & U. The program sees online peer health coaching delivered by people with lived experience of spinal cord injury who are trained peer health coaches. As a peer coach and mentor, I was excited to see their model and the work they have put in to develop their online platform and structure around supporting and training their peer coaches. Their concept of training peers as professionals is something that I hope is adopted more as more work is done in this area.
As a presenter, I was excited to share the work that we have done so far at the SRI with our consumer engagement program. In this presentation, I collaborated with representatives of Praxis Spinal Cord Institute, Spinal Research UK, and Dr Magdalena Skybant. We collaborated to speak about the importance of consumer engagement in spinal research and provided organisational perspectives of program development. I was able to present the importance of developing awareness of the value of SCI research within the broader community and engaging with stakeholders, such as our consumer advisory network.
Knowledge translation was also an important area of interest discussed at ISCoS 2021. The presentation on the development of the Integrated Knowledge Translation guiding principles reinforces the importance of engaging with stakeholders and end-users of research to ensure that they are involved in the research cycle and eliminating tokenism from SCI research. The SRI also collaborated with the North American Spinal Cord Injury Consortium (NASCIC) and Gothenburg Competence Centre For SCI to present how organisations can share research. In this presentation, I discussed the importance of organisations using alternative forms of media to disseminate spinal research. I was able to highlight the work that the SRI has done with the “In Conversation” series and the 2020 “Why Research Matters” publication. Such examples reinforce the importance of using non-traditional forums to translate knowledge within the broader SCI community.
ISCoS 2021 was a great learning experience for me, both as an attendee and as a presenter. The experience it gave me in seeing how consumers, researchers and clinicians can work together globally with each other provided me great excitement in the development of our consumer engagement program at the SRI.
For more highlights from ISCoS 2021, take a look at this blog by SRI CEO, Kristine Hendry, and International Research Collaborations Manager, Emma Peleg.