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

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

7. We can support fundraising efforts to secure research dollars.

Learn more about the SCI Mobility Lab, located at the Toronto Rehabilitation Institute’s KITE Research Institute, at 

https://sites.google.com/view/scimoblab/home

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

6. We can advocate and move research along at a faster pace. 

Rather than wasting time investigating every nuance, the research can take what we need and move on to the next step.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

5. We can disseminate results so others learn about the latest research and help advocate for policy change, or implementation of new treatments/therapies.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

4. We can help interpret results.

A well-designed study means the results would be meaningful and applicable.

Whether it’s an early-stage study that tells us which direction to focus on, or late-stage research where we can take something and apply it to practice, even negative results are successful because they tell us what not to do.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

3. We can aid with research design and implementation so that the project is feasible and researchers can collect the data they need.

We can identify flaws in a research design that could lead to lost, missing or unreported data.

A well-designed study would make recruitment/retention/compliance less challenging. This can be the difference between a successful study and a failure — particularly when developing devices or products that align with needs.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

2. We can assist with recruitment of participants in studies, which is something many scientists struggle with. An interesting study on a relevant topic with potential to benefit the participant sells itself and can spread like wildfire through our community.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

1. We add relevancy, helping to define research questions.

Our presence ensures research is focused in areas of importance to us and that it addresses a need or gap in care or service or explores a novel treatment or therapy that leads to neurorecovery. 

NASCIC and the SCI Alliance are made up of multiple stakeholders, including people with lived experience of SCI whose mandate is to set priorities for research.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

“People with SCI are experts in our own right by virtue of our lived experience. 

What we have to say matters and can directly influence the direction of research priorities, as well as how projects are designed and administered,” says Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab. 

“I recognize the dual role and unique perspective I bring as a person with lived experience and the value of that in producing high quality research that reflects the priorities and needs of the SCI community.”

Kaiser says when people with SCI drive research, they focus on reduction and treatment of secondary complications, improvements to quality of life and accessibility as well as finding a cure for paralysis.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Much has changed in the 10 years since Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, first entered graduate school.

Then, she received pushback from her advisors who feared her C6-7 complete SCI would bias her data collection and analyses of that data. 

But now, “Research has been slowly shifting to include individuals with lived experience of a specific illness/disease/condition in the decision-making process from start to finish,” she says.

Kaiser said this positive shift is an important step forward because building a strong partnership between the SCI and research communities can enhance the quality of the research and improve outcomes.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Jeff Welden, a C3 quad from Long Island, New York, agrees. 

“I’m on a community advisory board developing a brain-machine interface,” he says.

“The CAB’s brainstorming and troubleshooting forges a relationship where the project’s team manages advanced planning rather than corrective reaction. 

Utilizing the skills we have acquired as natural problem solvers is a surefire way to improve result efficacy, community acceptance, available usefulness and impact of the project’s result.”

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Jen French, vice president of the North American SCI Consortium and executive director of the Neurotech Network, says the $6.3 billion 21st Century Cures Act, enacted in 2016 and allocating $4.8 billion to the National Institutes of Health for precision medicine and biomedical research, helped shift the model from old-guard exclusionary research to present-day end-user input from the ground up. 

Pharmaceutical companies were among the first to embrace the concept of participation by people for whom the products and treatments were designed because there is a financial gain in avoiding expensive trials that fall apart from lack of enrollees.

“When you design a trial, if it is not people-based, it has a higher probability of failure,” says French. 

“Embedding the voice of experience can totally change the way therapies, devices and delivery of biologics is done. It’s about understanding the way we live our lives.”

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Jennifer French wrote the book on what it’s like to participate in a clinical trial. Called On My Feet Again, the 2012 publication includes her experience of testing an implanted neuro-prosthetic system that enables her to stand. 

French, a C6-7 quad, is vice president of the North American SCI Consortium and executive director of the Neurotech Network.

“When you think about how smart phones were designed, they have a full division of experts focused on the user,” says French, who lives in St. Petersburg, Florida.

“Before anything is done, they gather input from the people who are going to use the finished product. 

Contrast that with traditional medical research, where they rarely talk to the end user until clinical trials.”

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Dennis Bourbeau believes that including people with SCI in the research enterprise, along with asking them to assist defining the problems and parameters for successful solutions, is key to achieving research and clinical breakthroughs.

“The community of people living with SCI is savvy, motivated and well-organized,” he says. 

“Funding agencies and regulatory institutions are actively seeking their input and encouraging researchers to include individuals with SCI as important stakeholders, which helps to incentivize the researchers. 

I think that researchers should see more examples of how an inclusive research model is successful and be given the expectation of adopting this research model if they plan to conduct translational work.” 

Translational work describes projects intended to actually benefit real people, rather than satisfy a scientific curiosity.

RESEARCH IS BETTER

 WHEN PEOPLE WITH SCI HELP DESIGN IT

The FES Center wanted to better understand how mild electrical stimulation of certain nerves can improve bladder and bowel function.

“Before investing a large amount of time and money in this direction, we asked individuals with SCI about how they manage their bladder and bowel, what their priorities for functional recovery were and whether they were even interested in an approach that used nerve stimulation,” says Dennis Bourbeau, a research investigator at the Cleveland FES Center. 

“An independent advisory board helped craft the questions and helped us interpret the feedback that we received.”

The results were published in the Spinal Cord journal, where clinicians can find them and potentially use them to improve the quality of life of people with SCI they see in their offices.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

“As an engineer, I think in terms of first developing a good definition of the problem, and then understanding the elements of what would be considered a successful solution to that problem,” says Dennis Bourbeau, a research investigator at the Cleveland FES Center.

“Developing the solution itself should come after these first two steps.

It is critical to include all stakeholders, especially individuals with SCI, at all points of this process, not just with evaluating a potential solution that was defined by the other stakeholders.”

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

“Laypeople gain a deeper understanding of the research and the researchers gain a deeper understanding not only of the lived experience, but also the end goals articulated by representatives of the SCI community,” says Matthew Rodreick, the group’s executive director, about how including people with SCI from the ground up benefits all involved.

Dennis Bourbeau, a research investigator at the Cleveland FES Center, asserts that including people with SCI at all stages of a study is effective problem solving. 

Also, it could save investors a large amount of time and money.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

More professionals need to be open to having an advisory board of people with SCI at their disposal, Bonnie Richardson said, noting most participants are willing to donate their time to improve products and services for their community.

This is where advocacy groups like Unite 2 Fight Paralysis come in.

Its network has directed, trained and supported advocates in multiple states to push for legislation to fund community advisory board-based clinical studies. 

These studies have resulted in more than 40 people with SCI receiving interventions to pursue functional gains.

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.”