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.

It Takes a Team

Bonnie Richardson
Bonnie Richardson

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.

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.”

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 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.”

More professionals need to be open to having an advisory board of people with SCI at their disposal, 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.

“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.

For Best Results, Consult End-Users First

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.

“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 Bourbeau. “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.”

For example, 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 Bourbeau. “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.

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.

People-Based Trials

Jen French
Jen French

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.”

French 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.”

Jeff WeldenJeff 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.”

Resources
• Canadian Spinal Research Organization, csro.com
• FES Center, fescenter.org
• Neurotech Network, neurotechnetwork.org
• North American SCI Consortium, nasciconsortium.org
• On My Feet Again: My Journey Out of the Wheelchair Using Neurotechnology, by Jennifer French, available at most online booksellers.
• Spinal Cord Series and Cases journal, nature.com/scsandc
• Spinal Cord journal, nature.com/sc
• Unite 2 Fight Paralysis, u2fp.org


How to Become Involved with NASCIC

by Jane Wierbicky

United Spinal Association is a Principal Member of the North American Spinal Cord Injury Consortium, whose mission is, “to bring about unified achievements in research, care, cure and policy by supporting collaborative efforts across the spinal cord injury community.”

NASCIC advocates for the involvement of people with SCI in all aspects of research — care, cure and policy. For example, in research, NASCIC aims to include the perspectives of people living with SCI not only as research subjects, but also to help inform study design, study implementation and dissemination of results. The consortium allows for stakeholders to work collaboratively to bring about change. One of the ways this is done is by working together for projects approved by the project review committee, on which I currently serve. We review proposed projects to ensure they meet the following criteria:

• Form relationships between the individuals and organizations representing SCI;

• Exchange valid, trustworthy and useful information, experience and knowledge;

• Promote best practices in research, treatment and care;

• Create or strengthen a unified voice for SCI in North America;

• Promote collaboration among experts in the fields of research and/or clinical care and/or advocacy;

• Impact the lives of people living with SCI;

• Meaningfully and actively engage people with SCI.

If the PRC approves a project, it is sent to the executive council for a vote. If the proposal is accepted, NASCIC expects to be fully involved and an equal partner in all project activities and decisions.

There are three types of NASCIC memberships: Principal, Patron or Partner. There is no cost for people with spinal cord injuries to join NASCIC as Patron members. Since United Spinal Association is a consumer organization, it is a Principal member. You can learn more about these levels, including a link to join NASCIC at nasciconsortium.org/membership.

Patron members can register for NASCIC’s Project Engagement Database to be considered as an advisor/advocate on SCI projects that NASCIC is involved in at nascic.wufoo.com/forms/nascic-project-engagement-database. By serving on a project, Patron members ensure that the perspectives of individuals with SCI are included. A list of some of the projects that NASCIC is, or has been, involved with — including one proposed by United Spinal Association — can be viewed at nasciconsortium.org/projects.

Patron and Principal members are also engaged in other ways, such as through involvement in the PRC. The majority of the PRC members live with spinal cord injury or are family members. Fellow United Spinal Association employee Jose Hernandez, C5, recently joined the executive council. Each Patron member has the right to attend the annual meeting of NASCIC members where they have one vote, which is self-representing.

Jane Wierbicky is the nurse information specialist for the United Spinal Resource Team.


7 Ways Lived Experience Improves SCI Research

Anita-Kaiser-Photography-by-Chris-Chapman
Anita Kaiser / Photography by Chris Chapman

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.

“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,” she says. “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. Here are seven ways she says 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.

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.

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.

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.

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

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.

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 sites.google.com/view/scimoblab/home. And go to kite-uhn.com to follow KITE.

 


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