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 that showcase excellence in SCI research, care and innovation in action. 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.

We hope you find these stories enlightening. This month we take a look at changing how research is done to make sure that people with lived experience (PLEx) are included right from the start. 

Dr. Heather Gainforth, 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, describes her work in Integrated Knowledge Translation (IKT).

Involving people living with SCI to share their knowledge at the start of research is, for her, just as important as knowledge translation at the end of the study.
“...change the way we all do research, so that everybody’s research is more practical, more meaningful…"

This takes partnership, collaboration and communication. Guiding principles were co-developed by a multidisciplinary group of SCI researchers, clinicians, people with SCI, representatives from SCI community organizations, and funding agencies.  

“I first partnered with lots of spinal cord injury organizations and leaders in partnered research from across North America. And asked, how would we do this? And together we've created the first guiding principles for conducting research in partnership with SCI and community organizations. So we actually have all created these guiding principles. As a partnership. And now we're really leaning into the behavioral science piece of it … what it means to be a partnered researcher.” 

In addition to guiding research priorities for the SCI community, Integrated Knowledge Translation seeks to avoid tokenism like recruiting a small number of people from underrepresented groups in order to give the appearance of equality. “Tokenism happens when a partner is asked to endorse, and therefore legitimize, research programs over which they have little real influence or control.”

Heather describes a helicopter approach to studies, where researchers come in with minimal interaction, extract the data they need and then fly away so “you never see them again.” This kind of tokenistic science not only fails to engage with the community for whom the research is being done to benefit, but it also risks alienating them.

“Let's make sure that when we do spinal cord injury research, and when we ask for the time and effort of people with lived experience … if we're asking them to come and work with us, it should be quality engagement, they should have shared decision-making and it should be meaningful to them. Otherwise, why are we taking their time away from all the other priorities in their life?"  

So, how do you know if you’re making a difference? How can you measure impact?
Since much of research work is for longer-term results, Heather and her team check on the impact that can be seen immediately. This means checking web visits, for example, or social media engagement.

“When we do partnered work, does it tick up the awareness? And we can actually show you that, actually we did something as a partnership here and we increased [awareness].”

By tracking visits to the website landing page, Heather and her team could see the difference that working in partnership had on awareness. The result was extremely meaningful; website metrics showed an uptick in exposure and engagement.

Heather is seeing the impact of publishing the guiding principles.

“…we're seeing the guiding principles there. People are talking about them at conferences, people are talking about them at meetings. I see people discuss them in all sorts of places. They've been cited in The Lancet as an important approach for changing the way we do engaged research. So the guiding principles are making an impact, but we also recognize that they're one step in this and that we're trying to make much bigger change.” 

Resources

• If you're attending ISCoS this year (International Spinal Cord Society) in Vancouver, BC check out this poster: Where the Rubber Meets the Road: Practical Tools to Build Capacity to Support the Meaningful Engagement of People with Lived Experience of Spinal Cord Injury from Heather and her co-authors (program here: https://zibrant.eventsair.com/61iscos)   
• Participatory research in French: https://societeinclusive.ca/en/faq-de-la-recherche-participative/
• Check out the Michael Smith Health Research BC resources for knowledge translation
• Web analytics? get started with Google Analytics and social media metrics
• Participatory research on spinal cord injury within the SFU Gerontology community summit  

Coming Up Next!

Next month, we’re hearing what other attendees presenting at ISCoS have to say about developing the National Care Strategy for SCI. We will also hear from them on access, user feedback, and qualitative research, and get a sneak peek into the world of commercialization, where innovation gets into the hands of the SCI community.

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