RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

RESOURCES:

• Canadian Spinal Research Organization, opens in a new windowcsro.com

• FES Center, opens in a new windowfescenter.org

• Neurotech Network, opens in a new windowneurotechnetwork.org

• North American SCI Consortium, opens in a new windownasciconsortium.org

• On My Feet Again: My Journey Out of the Wheelchair Using Neurotechnology, by Jennifer French, available at most online booksellers. https://www.amazon.com/My-Feet-Again-Wheelchair-Neurotechnology/dp/0988234203 

• Spinal Cord Series and Cases journal, opens in a new windownature.com/scsandc

• Spinal Cord journal, opens in a new windownature.com/sc

• Unite 2 Fight Paralysis, opens in a new windowu2fp.org

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

It takes a team to make a successful product, treatment or service — and teammates who will be end-users play an especially important role in making the end result a success.

“People with SCI are living the life every day. We know what has and has not worked for us in the past.  

We also usually have a good understanding of what would have made it more usable,” says Bonnie Richardson. 

“If designers utilize an advisory board of people with SCI, they can save tremendous time and money by not repeating these same design issues. 

The earlier the board is consulted, the greater the success and savings.”

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Bonnie Richardson praises NASCIC’s engagement program, which connects projects requesting input or involvement from people living with SCI to willing participants. 

This human-focused approach allows those who will benefit the most from the research to play an active role in designing the studies, “rather than just be data that is measured and manipulated,” says Richardson. 

“When considering our individual abilities and challenges, we are the experts. 

When researching something for our community, collectively we have invaluable real-life experience to contribute.”

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Bonnie Richardson, a C5-6 incomplete quad from Sequim, Washington, is not a scientist.

But she is listed as an author on a study that appeared in the November 2020 Spinal Cord Series and Cases journal that looked at how people with SCI access information about experimental therapies and clinical trials. 

She worked alongside scientific researchers whose careers are built on studying SCI, helping to create a survey and analyze the results. 

“The goal was to gain a better understanding of how people living with SCI get their information,” she says about the North American SCI Consortium-sponsored research.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

For far too many years, spinal cord injury researchers have failed to include disabled people in their studies as anything but subjects.  

Fortunately, that’s changing as more people with SCI/D participate in consumer advisory boards and other human-focused approaches. 

They are designing surveys, focusing on goals and giving key input before a solution that impacts them is completely designed and ready to submit for approval.

Whether it’s creating products, designing treatments or collecting data, people with SCI are increasingly involved in all aspects of research.  

Their vast experience, expertise and real-life knowledge are informing approaches — before funding is wasted or unrealistic conclusions are reached.