Reframing the Science and Practice of Spinal Cord Injury Rehabilitation: Two Decades of Reflection

Anniversaries are a time for pause, reflection and celebration. The Canadian Spinal Cord Injury – Rehabilitation Association (CSCI-RA) was born in concept following a discussion among colleagues over lunch in Toronto on a crisp fall afternoon with leaves falling around us in 2002. We animatedly discussed the need for, and value of, interprofessional dialogue among clinicians and scientists with persons with spinal cord injury (SCI) and families to bring about change in the field of SCI rehabilitation. At that time, I had no idea when I committed to host a national SCI rehabilitation meeting that I would be actively engaged in the organization and its mandate two decades later.During the growth and development of our organization (see Figure 1), I am proud to say that from the outset we have engaged people living with SCI, family care providers, and stakeholders across the country to foster a culture that promotes comradery and dialogue with staff, scientists, and regulated health care providers. We initiated having 25 to 30 people with lived experience from across the country attend our meetings, long before engagement of partners with lived experience was a concept! We have had many memorable moments and gatherings of staff, students, sponsors, and people with lived experience for photos and wheelchair races in the exhibit halls over the years.From the outset, we have relied heavily on volunteerism. We are a small organization with a growing membership. We do not have a regular revenue stream or membership reserves to call upon; each conference is its own “special project” from a financial and logistical perspective. We have benefited from group momentum and have leveraged partnerships with many organizations to realize our vision. The initial funds to support the creation of CSCI-RA were provided from Barry Munro and the Canadian Spinal Research Organization, with many matching investments thereafter. Partner organizations have included KITE Research Institute, University Health Network Foundation, Spinal Cord Injury Ontario, Ontario Neurotrauma Foundation, Praxis Spinal Cord Institute (former Rick Hansen Institute), the Canadian Association of Physical Medicine and Rehabilitation, Wings for Life, Craig H Nielsen Foundation, March of Dimes, Journal of Spinal Cord Medicine, The International Spinal Cord Society, The Academy of Spinal Cord Injury Professionals, Inc. (ASCIP), and the American Spinal Injury Association (ASIA). These organizations have helped to lift us up and buoyed our efforts at many critical time points in our history. SCI Ontario has been a stalwart partner in enabling people with lived experience in Ontario and across the country to participate through supporting attendant care needs and the orientation and debriefing of people with lived experience before and after meetings. We owe a debt of gratitude to sustaining corporate sponsors who have supported us from concept to reality and who have helped to maintain a learning culture by supporting educational offerings for members between the biannual conferences and annual general meetings.Reflecting over the years, I am proud of our commitment to address and talk about issues that make us all uncomfortable—everything from the wonders of neuroanatomy to inequity in health services for women and veterans through a reconception of how we evaluate our success. We have frankly discussed gaps in knowledge, care, research, and resources from a variety of perspectives.Spinal cord injury remains a complex and relatively rare disease among Canadians.1 Although, with the rise in incidence of nontraumatic SCI, the proportion of 40 million Canadians requiring SCI rehabilitation services is likely to continue to expand, such that it will not be who can but rather who is most likely to benefit from rehabilitation services. With the recent advent of guidelines,2,3 best practices, indicators of quality care,4-15 collaborative networks and implementation science,16 and a registry,1 one can envision a future where precision rehabilitation17 is a viable future entity.Canada is a large country spanning 9.98 million km2; 5514 km from east to west and 4634 km from north to south.18 We continue to be challenged by geography as we try to provide tertiary, and sometimes quaternary, SCI rehabilitation services to people with SCI living in the community, many who live more than 150 km from their regional or provincial rehabilitation centre. Despite the geographic and physical barriers to care, we continue to support a vision for interprofessional delivery of in-person SCI rehabilitation with remote monitoring and transitions to local community services where appropriate.19,20 The pandemic provided an opportunity to accelerate our virtual educational and social support offerings to members throughout the country and to conduct our annual general meetings. Despite these advances in care delivery, we continue to value the opportunity to meet in person to exchange perspectives, ideas, and values on a biannual basis.Throughout the history of CSCI-RA events (see Figure 1), we have openly discussed our failings as a community, included the voice of people with lived experience, featured the work of junior and evolving mid-career scientists (see Table 1), discussed hot topics in the form of “Top 6 Articles You Should Have Read,” and celebrated the growth and development of the field with the creation of new awards and expansion of abstract award categories over time. We have embedded student social and speed-mentoring sessions into our biannual meetings to support the growth and development of the field. Many former student abstract winners are now leaders in the field of SCI rehabilitation. These efforts have helped to foster a sense of community, which is palpable among conference attendees; we have invited others to comment and provide feedback through special issue publications associated with our meetings.The special issue of the Journal of Spinal Cord Medicine from 2012 to 2021 was integral in demonstrating that Canadians are leaders in SCI rehabilitation health service delivery. Articles associated with these five prior issues21-25 have been viewed (views and downloads) 94,726 times to date, with each issue averaging approximately 20,000 views as of July 2023.Over the years, we have had external parties donate funds to create awards to honor patient advocates (Patti Dawson Advocacy Award, see Table 2), long-serving clinicians (Dr. Nirmala Dilip Bharatwal Lecture Series), research excellence (Kent Basset Spiers Award, see Table 3), and the Champion for Change Award (see Table 4). The lists of prior awardees reflect the depth and variety of Canadian SCI rehabilitation expertise among students, staff, advocates with lived experience, and scientists. You will note that many former student awardees are now faculty at leading organizations around the world.The CSCI-RA is celebrating its 10th National SCI Meeting. A 10th anniversary is typically acknowledged by a gift of aluminum to reflect the strength of our bond and our enduring passion for the field. For those who are able, we ask that you bring any aluminum pop can tabs to the 10th National Meeting for donation to the March of Dimes.CSCI-RA has been an effective mechanism to raise the profile of SCI rehabilitation in Canada, to help drive academic progress, and to attract students to train and remain in the field throughout their careers. We are grateful to the Journal of Spinal Cord Medicine (ASCIP) in the past and Topics in Spinal Cord Injury Rehabilitation (ASIA) currently for their support in helping disseminate our annual meeting materials and extend the reach of our organization. Award-winning abstracts and papers from prior special issues have had a high impact, with many views and downloads across North America, Europe, and China. We continue to be inspired by the resilience and accomplishments of people with lived experience and value their vote of confidence and trust when agreeing to evaluate new or novel approaches to care or research. CSCI-RA is our organization (see Table 5); we remain open to evolving and are more than willing to collaborate with other like-minded organizations. SCI rehabilitation is an ever-evolving field; we look forward to unleashing the joint efforts of our members, people with lived experience, regulated health professionals, scientists, research staff, collaborative partners, and sustaining sponsors over the next decade. Assist us in making precision rehabilitation a reality!

Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.