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February 2023
What is National SCI Care Strategy?
A national care strategy will ensure a system of care built on evidence and practices that support people with spinal cord injury (SCI) to live their best life in the community. 

To support this initiative, Praxis is sharing best practices drawn from across Canada that showcase excellence in SCI research, care and innovation in action. 
We hope you find these stories enlightening.
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In this month's theme learn about

How Can I Make Change Happen:
Advocacy

Each month the National SCI Care Strategy newsletter shares examples of excellence and best practices in action, introducing practitioners and experts at their work. 

This month, Barry Munro, CDO Canadian Spinal Research Organization and Treasurer/Director, North American SCI Consortium, answers the question from many in the SCI community, “How can I be involved?” His answers show how advocacy and inclusion set priorities for the SCI community. Listen as he talks about an initiative in development that will help the SCI community get comfortable with speaking up.

Seems familiar? Yes—you last heard from Barry in our first newsletter, back in June 2022!   



Why Advocacy?

...patient-centred health movement establishes priorities
 

Without understanding what people living with SCI face every day, it’s impossible to look from the outside and decide what direction research should take and where innovation can help. Input from patients, their families and their carers helps shift the thinking that walking again is the sole aim for everyone in a wheelchair. By bringing in a patient-centred health movement, the priorities that improve quality of life for the SCI community rise to the surface.

This needs willing advocates who are happy to contribute and comfortable with speaking up.

“The research community itself says [we] don't need students or basic scientists that come in; they've never met a person with spinal cord injury working on sci research in general. We'd love to understand more about the injury and this is a way of breaking it down for them.
” 

Consumer and Community Involvement Program, Western Australia


How Can I Be Involved?

How do I learn to be an advocate?

Speaking up and giving your opinion can be pretty daunting, but once you feel comfortable it’s good to be involved. People living with SCI have a wealth of experience that isn’t often tapped into.

But how do you get started?
How do you learn to be an advocate?

This is where training helps. The North American SCI Consortium (NASCIC) is developing a free online course for individuals with SCI and caregivers, to empower them to serve as advisors at every stage and type of research. The course is free, with Modules 1 and 2 available to review.


“People, once they get this grounding, they can feel comfortable when they're asked to sit or when want to speak up, I want to be involved…as you know, the old adage - knowledge is power."  

SCI Ontario Research Opportunities


Getting Comfortable With Being A Change Agent

Advocacy is the way forward!

Tapping into lived experience is essential for moving knowledge into action. Many patient groups have leveraged their wealth of experience to drive change. For example, advances in HIV research and treatment were largely driven by advocacy especially in the early days of AIDS activism.
 
According to Canada’s Strategy for Patient-Oriented Research, “there is growing support for the view that health research needs to assess interventions and outcomes considered important by patients and clinicians and that by doing so costly mismatches of research-to-needs can be avoided”. And for this to happen effectively, people with lived experience need to be asked but they also need to feel comfortable with being change agents and with speaking up. Workshops and training programs in Advocacy 101, such as the series in development with NASCIC, are valuable resources and supports.
 
As Barry says, as a ‘lifer’ living with SCI for more than 35 years, advocacy is the way forward.


“…many of us feel…that this [advocacy] is the way we can really make positive change.”

Alberta Strategy for Patient Oriented Research SUPPORT Unit (AbSPORU)




Bench to Bedside 

...putting theory into practice 

Knowledge is much more useful when it’s put into practice. This is often referred to as translation – taking a concept from the lab or from medtech innovation and putting it in the hands of the people who will be using it.

However, many of these ideas in research and innovation fail to make it out of the lab or into commercial reality, falling into what’s often described as the ‘valley of death’. There’s a huge failure rate for treatments, medical devices, and mobility aids; many never reach the community they’re intended to help.

There are ways to avoid this ‘valley of death’ for innovation, and advocacy is one of them. Including people with lived experience at all stages of the process and from as early as possible, helps establish priorities that are meaningful to the community. Knowing what would actually be useful helps focus energy on getting the best products and treatments to market.


“…the big issue in [medical] science right now is translation. How do you take a basic concept and move it into the clinic, bench to bedside? How do you take something and make it practical, where it's actually being [used] in the community?” 

Praxis SCI Commercialization programs

Resources   

Coming Up Next!

Next month, we are continuing our exploration of best practices in action as we move towards a National SCI Care Strategy. 

We're also interested in what you would like to share too; how are you putting best practices into action in your clinical practice and community? Please let us know. 


You can leave your feedback or share your story.

ABOUT: Praxis started an engagement process in 2019 to create a national care strategy aimed at 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 a national system of care built on evidence and practices that support 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; instead of searching for solutions in isolation, the national strategy will give people access to peer experiences and stories of excellence that show best practices in action and their impact daily life.

Praxis Spinal Cord Institute is a Canadian-based not-for-profit organization that leads global collaboration in spinal cord injury research, innovation and care. We accelerate the translation of discoveries and best practices into improved treatments for people with spinal cord injuries. Praxis facilitates an international network of people with SCI and other world-class experts to work together to identify, prioritize and solve the most urgent challenges.

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