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Partnering for meaningful impact in the spinal cord injury community

Behavioural change scientist Dr. Heather Gainforth wants researchers to start asking, “How can I help?”

May 4, 2023

DR. HEATHER GAINFORTH HAS ONE SIMPLE QUESTION whenever she starts her research: “How can I help?”

In her work with the spinal cord injury (SCI) community, Dr. Gainforth conducts research she hopes will change how other research partnerships are done, by having them include more meaningful, real-world engagement with the communities who would benefit from the work.

“I’m interested in why people do what they do,” says Dr. Gainforth, an Associate Professor in UBCO’s School of Health and Exercise Sciences. “My work asks two questions: ‘How do you change behaviour?’ and ‘how do you do it in a way where the research ends up in the real world?’”

This desire to apply research to the real world started with Dr. Gainforth’s master’s thesis on exploring health messaging. The discovery of a vaccine for the human papillomavirus—approved by the American Food and Drug Association in 2014—had the potential to prevent cancer, yet students at her university hadn’t heard of it.

Dr. Gainforth asked why.

“There’s a 17- to 20-year gap from when research is done to when it’s used in practice,” says Dr. Gainforth, who initially shied away from becoming a professor because of this significant delay. She soon realized she had a passion for knowledge translation—or the movement of research from the lab into the hands of people who can use it.

During her doctoral research at Queen’s University, Dr. Gainforth started working with Peter Athanasopoulos, Director of Public Policy at Spinal Cord Injury Ontario, and someone living with a spinal cord injury himself. He said if she wanted to do research with people with SCI, it would need to be a true partnership where she listened to the community.

She enthusiastically agreed. By the end of her degree, the pair had shared guidelines across Ontario and Dr. Gainforth had a new understanding of knowledge translation—or, how meaningful partnerships are key to applying research in communities who need it.

When Dr. Gainforth arrived at UBCO, she contacted Spinal Cord Injury BC, Alberta and Ontario to learn what she could begin doing to help right away. As a result of that partnership, the SCI organizations were able to use her approach to translate the research into practice more quickly to address real-world needs.

Then, they asked her to do something bigger.

“They said, ‘We need more people doing research the way you do it,’ said Dr. Gainforth. “That turned my behaviour change brain on. They wanted me to change the behaviour of other researchers.”

Working with a multidisciplinary group of partners, including SCI researchers, clinicians and people with SCI, Dr. Gainforth’s team developed guiding principles for research partnerships to conduct quality and ethical research that is relevant, useful and avoids tokenism. The principles are to be used by all partners early and throughout the research process.

Dr. Gainforth says if her work can help support researchers to meaningfully engage, we can close huge research gaps and help turn research into reality. “I’m of the belief that research is not complete until it has a real-world impact.”

The guiding principles apply to areas in health research within, and beyond, spinal cord injury, including exercise counselling, peer mentorship and bowel and bladder care intervention, meaning more people than ever can benefit from her expertise.

Her work has been accessed across Canada and in nearly 40 countries, with researchers around the world adopting her principles. This national and international impact led Dr. Gainforth to be named UBC Okanagan’s 2023 Researcher of the Year in Health.

“At UBC Okanagan, there’s a lot of support around doing this work and thinking, ‘How do we ensure that what we’re doing involves a community-engaged approach?’ UBC’s strategic plan speaks to this sense of community engagement and that’s exciting for me, because I have the opportunity to help every researcher on campus.”

In her Applied Behaviour Change Lab, Dr. Gainforth is now training the next generation of scientists to consider partner feedback before all else. “When a student in our lab proposes a study, the first question I ask is: ‘What does the community think about that?’”