In 2019, Praxis started an engagement process to create a national care strategy by building on the strengths and collective wisdom of the spinal cord injury (SCI) community across Canada. Based on community consultation, this process led to Being Bold: Toward a National Spinal Cord Injury Care, Health & Wellness Strategy Discussion Document & Consultation Report, a discussion document, and then to the follow up community report, SCI Care for Canada: A Framework for Strategy and Action, which lays out a framework for an actionable National SCI Care Strategy.

The ongoing vision will ensure an equitable and optimal national system of care built on evidence and existing excellence that supports people with SCI to live their best life in the community. As the ‘backbone’ organization in this initiative, Praxis is sharing best practices drawn from across Canada that showcase excellence in SCI research, care and innovation in action. Instead of searching for solutions in isolation, we gather peer experience and stories of excellence to show how best practices in action impact daily life.

We hope you find these stories enlightening.  

Each month the National SCI Care Strategy newsletter will highlight examples of excellence and best practice in action, introducing the practitioners and experts involved. This month, in celebration of National AccessAbility Week here in Canada, we’re showing why priorities in research and development must come from people living with SCI.  

Dr. Louise Clément, who is the Executive Lead for Clinical Partnerships with the Health Standards Organization in Canada, describes her work in SCI, showing how solutions are only possible through collaboration with people with lived experience (PLEx) and through breaking down barriers to education.

Why do we need a National SCI Care Strategy? Consultations with individuals and organizations carried out for two reports, Being Bold and SCI Care for Canada across the SCI community, reported that:

• Care is not standardized
• Timely access often isn’t possible
• The continuum of care is fragmented

Research shows that best practices at centres of excellence give the best outcomes in both acute clinical management and rehabilitation. However, since it is not standardized across Canada, the quality of care after SCI often depends on where you get treatment. In other words, successful recovery and best quality of life depend heavily on where you live and where you receive care.

A national strategy for care not only maximizes and optimizes service delivery from the healthcare system, but it also helps ensure the most appropriate treatment to those who need it and in a timely manner. It is centred around systems thinking—considering healthcare as a whole rather than as fragmented, as a complex system. But as Louise points out, ‘systems thinking but remember the people.’

Consultations also noted that persons with lived experience of SCI aren’t always consulted. 

“There's a systems thinking, which is great, but you've got to be deliberate about the people… there's…what I call the silent population [who] for all kinds of reasons [face] barriers that don't allow people to come in and participate…” 

For the reasons discussed last month, collaboration and inclusion are vital when developing strategies for care. Without input, the strategy may miss out on actual priorities for the SCI community as it misses the voices, opinions and priorities of people with lived experience (PLEx).

Echoing Barry Munro’s call in June’s newsletter, including people with lived experience is key to what Louise describes as equity-driven engagement.

“When we start talking about engagement and how people come together to talk about care and outcomes, it’s really [about] having the voice of all…I call that equity-driven engagement.”  

As Louise says, there are biases and stigma at work so there might be a teaching moment, an opportunity to educate others about spinal cord injury.

Many people think of spinal cord injury as a traumatic event, from a road accident or sporting incident, and thus preventable. Not many appreciate that almost half of Canada’s spinal cord injury comes from non-traumatic causes, such as cancer or a congenital issue. Preventing spinal cord injury is important but it’s also important for people to learn the symptoms of non-traumatic causes.

There’s also stigma around using a wheelchair, from language usage to street signage that isn’t helpful to the SCI community or to the general public.

When developing a National Care Strategy, educating the general public could not only help prevent injury but also bring awareness of the needs of SCI community.

“We have a tendency to get into our subject matter expertise...in very simple things, like the use of acronyms. I've told people in our teams, we've got to stop using acronyms. They're technical, they're dangerous because they actually don't reflect. People read them and say, well, what's that?” 

Louise points out that language itself can be a barrier, so one of her tactics is to stop using acronyms as they’re often confusing when you’re not an expert. Complex ideas need plain language without jargon; lay summaries of research papers make study findings accessible to a wider audience.

Another tactic is to help move information from theory into practical solutions. Knowledge translation mobilizes research from bench-to-bedside, out from the laboratory or academic world and into the hands of people who need it. For example, Praxis commercialization programs help move innovation into practical solutions. 

Resources

• National Care Strategies in action – take a look at what Canada is doing for diabetes and cancer
• Plain language editor software such as Grammarly can help de-jargon your writing /
• A lay summary aims to engage a broader audience through a brief review by explaining complex material to people who may not have previous knowledge on it. The goal of a lay summary is to increase understanding of a topic by answering the who/what/where/when/ and how.
  Check out lay summaries in action on these two research papers, on an SCS Research Scoping Review and on pediatric SCI
• SCIRE Community provides plain language summaries on clinical issues for the SCI community

Coming Up Next!

Next month, we’re learning how to get research into the hands of users. Hear from Heather Gainforth, from the School of Health and Exercise Sciences at the University of British Columbia Okanagan on changing the way research is done, so it is relevant rather than tokenistic and engages with people with SCI.

Until then, please leave your feedback or share your story.