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April 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

Partnering for Impact

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, This month, we’re learning about partnering in research to maximize impact. Heather Gainforth is an Associate Professor at the University of British Columbia Okanagan in Kelowna, BC, Canada, a Michael Smith Foundation for Health Research Scholar, and an International Collaboration on Repair Discoveries Principal Investigator. She’s looking at partnered researched and asking what obstacles are there to doing this effectively for researchers, funders and health professionals.

Heather asks, “can we slowly change the way we all do our research so that over time everybody's research is more practical and meaningful, and I no longer hear these stories of tokenism in science?”  


Networks Expand Reach

Spreading the word.
 

Heather describes herself as a researcher who does research on people doing research. Her work on the guiding principles for Integrated Knowledge Translation (IKT) is getting more and more attention through word-of-mouth, networking, academic papers, and presentations at conferences.

Partnering up with existing networks has also helped. As Heather explains, “I have wonderful spinal cord injury partners in both academia and outside of academia behind me and they asked, ‘how can we support you to do this?’ And together we're all pushing together.”

As a result of this partnering for partnered research, more people are talking about the guiding principles and they’ve been cited in The Lancet as an important approach to changing the way researchers do engaged research.


“If any one of us tried to make this change on our own, it would be really daunting, but there's so many of us now making change.”

Open Data Commons SCI Research

Obstacles in the System  

What's holding us up?

Partnered research is essential to Integrated Knowledge Translation, and for this to happen it’s essential to make connections and establish partnerships. However, as Heather is finding through interviews with researchers, the system itself throws all kinds of obstacles in the way of partnered research. Researchers need to be really motivated to make it happen.

A recent study Heather ran showed that even though research values partnered research, it is challenging to make it work within the traditional system. Factors such as grant announcements coming out only a month ahead of deadlines and the value placed on publication number rather than meaningful engagement don’t incentivize partnership.


“If you're doing partnered research right now. You often feel like you're swimming upstream.” 

Health Research BC KT


Tackling the Basics 

To boost partnered research

Changing the system means understanding and identifying the obstacles to partnered research. Heather and co-researchers are asking questions by examining academic research and tenure protocols. The way that academics are hired, rewarded and promoted influences how they conduct research.
 
In addition to inviting them to sit on IKT panels, Heather is also interviewing funders to find out where the grants system influences partnership.


“We need to do work around the tenure system, the actual system of academia that supports or hinders partnership. It’s very easy to think that researchers are just not motivated, but the story is so much more than their capability and skill; it’s about opportunity. And we have to do a lot more with institutions and with funders to help them.”

SCI Ontario


Partnership Means Inclusion 

Avoiding disenfranchisement 

As an end goal, Heather hopes that increasing partnership in research promotes inclusion. Though she admits that it’s a long game, her work could help shorten the gap so that people with SCI aren’t disenfranchised by science.

“Our theory is that you will improve the quality of science, and from there you'll actually improve the lives of people with SCI around the world.”

NASCIC SCI Research Advocacy

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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