Partners for Good
The Ontario SCI Alliance is co-led by Spinal Cord Injury Ontario and the Ontario Neurotrauma Foundation (ONF). Together, 250 key provincial stakeholders and strategic partners of researchers, service providers, policy makers, funders and people with spinal cord injury address and resolve systemic barriers in Ontario. We have a clear vision and are getting things done.
Check back here for dates and details of upcoming meetings
Our last meeting took place on Thursday, October 1, 2020. To view presentation slides from the meeting, click here.
Alliance Update:
Ontario Neurotrauma Foundation is closing it doors
The announcement by ONF that they will be closing has been greeted with shock, sadness, and a sense of deep anxiety about what the future holds for the neurotrauma community. We are fielding many questions from community members about what this all means.
In the absence of a smooth transition and a sustainable long‐term plan, there is grave concern that the tremendous 20+ year legacy of ONF will be lost, that the critical, ongoing, research to practice programs will stop and the province‐wide community of practice will lose people and momentum.
Since the announcement, many alliance members, including the founders of ONF, have been actively engaged with MOH on transition plans. After our conversation with the Ministry, we are cautiously optimistic that the Ontario Government will work with our community in the development of a new, sustainable neurotrauma funding mechanism for Ontario. We are awaiting an official statement from MOH to share and we will continue to provide updates once we have a concrete direction moving forward.
For more information on the closure of ONF, visit https://sciontario.org/ontario-neurotrauma-foundation/
The Future of the Ontario SCI Alliance
While the operations of the Ontario SCI Alliance was heavily dependant on funding from ONF, SCIO has found a way, in the short-term, to sustain the alliance through our existing operational and donor dollars in a very tight budget. The alliance will need to evaluate its new identity without ONF.
Together as a community, we are confident that we can find a way to re-align the alliance in a way that is relevant to the principal of keeping researchers, service providers, hospitals, policy makers, and people with SCI together, in equal partnership. We are all committed to ensure that MOH and Ontario Health sees how the Alliance brings huge value to Ontario’s health transformation agenda.
We don’t have all the answers today. However we plan to setup a few alliance meetings over the course of 2021 to address and resolve the future of the alliance.
The alliance continues to believe that we:
- Play a critical role in engaging researchers with people with SCI,
- Create a forum where research to practice happens faster
- And we are best positioned to address and resolve systemic barriers that impact the quality of life of people with SCI through best practice research
Again, more to come on how we intend to re-imagine the role of the alliance as a public servant to our community in SCI research participation. We will communicate a course of action soon.
Integrated Knowledge Translation Principals in Research
We are finally at the point of launching the first ever integrated SCI knowledge translation principals in research! Under the leadership of Dr. Heather Gainforth, one of the first core members of the Ontario SCI Alliance, we now have evidence based and published principals on how the SCI research community can efficiently partner with people with SCI and community organizations. This concept had inspired the creation of the alliance many moons ago and now we are excited to witness this progression of evidence informed and consensus driven research partnership principals
The eight principles are designed to help SCI researchers and research users engage more meaningfully in research that is relevant, useful, and/or useable. The principles represent the first rigorously co-developed, consensus-based guidance to support meaningful SCI partnerships. The principles should be used early and throughout the entire research process.
The principles were co-developed by a multidisciplinary group of SCI researchers, clinicians, people with SCI, representatives from SCI community organizations, and funding agencies and are published in Archives of Physical Medicine and Rehabilitation. We believe that these principles may also be helpful for research teams working outside of SCI research.
Our partnership is committed to supporting SCI researchers, research users, and funders to use the principles. To view the principles and learn more, please:
- Visit our website at IKTprinciples.com and download the principles
- Follow us on Twitter @IKTprinciples for updates
- Sign up for our Webinar on March 12, 2021 at 1 pm EST/10 am PST
- Join our mailing list
I hope that you find that the principles resonate with you and are useful for giving a common language to discuss partnership within and beyond SCI research.
Ontario Degenerative Cervical Myelopathy Virtual Summit
The 2020 Ontario Degenerative Cervical Myelopathy Summit (DCM) held a multi-stakeholder event to explore DCM from an Ontario context. The summit brought experts together to address:
- Public, clinician, and MOH awareness
- Common nomenclature
- Access to timely diagnosis
- Communications between sectors
- Acute care management
- Access to rehab
- Community living
- Management of secondary complications
You can few the full report here.