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Praxis Spinal Cord Institute: Global collaboration in spinal cord injury research, innovation and care
Vancouver-based not-for-profit Praxis Spinal Cord Institute facilitates an international network of people with spinal cord injuries and other world-class experts to lead global collaboration in research, innovation and care to improve the quality of life for people living with spinal cord injury.
Bill Barrable is CEO of Praxis, which has been recognized as a top-rated charity by both Maclean’s and MoneySense in 2019 and 2020, and is accredited by Imagine Canada. The Institute’s vision is a world without paralysis after spinal cord injury, and it seeks to achieve this by taking a multi-disciplinary, adaptable approach, accelerating the most promising technologies out of the laboratory and into the hands of the people who need them most. Mr. Barrable has previously been named as one of Canada’s Top 40 Under 40, and talks to us about the global reach of the organization, the visionary commercialization program that incubates and accelerates early-stage research companies, and Praxis’ commitment to engaging individuals with spinal cord injuries to ensure its impact.
A Global Institute
“Praxis is an Ancient Greek word,” Mr. Barrable explains, “and its definition is the process by which a theory, lesson, or skill is implemented. That’s what we do – we take knowledge and turn it into action.”
The Institute was created in 2007, when it was known as the Rick Hansen Institute. It is still a legacy of the Canadian icon, athlete Rick Hansen, who sustained a spinal cord injury and became a paraplegic at the age of 15.
“As Praxis Spinal Cord Institute, we continue that vision of a world without paralysis after spinal cord injury under this new name. We focus on accelerating research and innovation in spinal cord injury – the cure and care – and its implementation. This includes the commercialization of products and services into practical solutions for people with spinal cord injury.”
Typically, organizations specialize in just one of these areas of spinal cord injury support, but Praxis offers all of them. It achieves this by involving people with spinal cord injuries in every step of the process. It sets itself apart as a unique charity in this way.
“We’re a global institute,” Mr. Barrable says. “It began in BC, became pan-Canadian, and now we’re international. One of the reasons for that is that it allows us to work together with scientists, innovators and clinicians from around the world, around projects to improve the health and quality of life of people with spinal cord injury.”
The organization has projects that include participants from over thirty countries. It has data research partners in places as varied as Australia, Israel, the United States, New Zealand and China. It also has bioengineering partnerships with universities in Canada, Israel, India and the United States.
“This gives us significant ability to leverage international alliances and resources, and accelerate the innovation to get it into a practical use much faster. It also allows us to reach into a much larger pool of patients worldwide for clinical trials, so that the enrollment in new studies can occur in a very timely fashion. This is one of the challenges we face.”
There are a number of benefits of having Vancouver as a location for the Institute’s headquarters, as it is in excellent proximity to a number of great universities in California, Washington, Australia and across the Pacific Rim.
“With an interconnected world, you don’t always need to be in the same place at the same time. For example, our Board is made up of people from several different countries, and when we have a board meeting there are five different time zones. So there’s the opportunity for us to work in a more productive way and take advantage of some great leadership and expertise.”
Incubate and Accelerate
There is a significant amount of money needed for organizations such as Praxis to continue their work, and this is an area of the not-for-profit landscape than can often feel alien to those looking in on the industry.
“We’re very fortunate to have the generous support of the federal government through Western Economic Diversification, and funding through the provinces of British Columbia and Ontario as well. The financial support from the corporate side, from the private sector too, plays an increasingly important role as we’ve expanded into our commercialization program.”
The company’s commercialization program arose from a need to address the critical shortage of readily available technology to serve people with spinal cord injury. The Institute uses the program to incubate and accelerate early-stage companies.
“They depend on industry membership and financial support. They need additional funding that can’t be offered by government sources, but needs to come from the private sector, and also experiential support that comes in the form of mentorship and advice that is critical to their success. Corporate support to the commercialization program is essential.”
One of the overarching principles the company uses is a model it developed a few years ago known as The Praxis Model, based on the literal definition of the Ancient Greek word, which starts with the identification of the priorities that people living with spinal cord injury have, and engaging them all the way in research and commercializing innovation to the delivery of care.
“We consider ourselves a leader in the development of a consumer program, not only for those with spinal cord injury but their family and their care providers. These are essential elements to ensuring that the priorities we set in terms of research and commercialization, and changes within the healthcare system that may evolve, that they reflect the needs of people who have the condition. In so doing, we ensure relevancy and that it’s going to have a significant impact on their health and their life later on.”
This approach has not only changed how the Institute works, but also has informed conversations about partnerships and how to organize and execute the entire continuum of translation of research to long-term quality of life and improved health outcomes. Praxis continues to receive positive inputs on the success of this approach within programs right across the organization.
A Challenging Condition
“This is one of the most difficult human conditions to be challenged by – spinal cord injuries, and the paralysis, and the almost three dozen secondary complications that people are increasingly vulnerable to if they have the paralysis. It is one of the most difficult medical problems for us to solve in our world.”
Over the past 25 years, significant scientific and medical advances have taken place, with a lot of this knowledge gained over the last decade as the development of knowledge has accelerated with improved technology.
“The changes in the processes of care – earlier time to decompression surgery, earlier and more aggressive and more sophisticated forms of rehabilitation that begin very early after an injury – have meant improvements in paralysis rates. We’ve been able to reduce those, and reduce to some extent the secondary complications that can follow.”
The main aims are to minimize the damage to the spinal cord, improve the physical function of the individual, and to reduce long-term healthcare costs by reducing readmissions from things like secondary complications.
“The research translation that we do is key to this, and as we move forward we know that not only does spinal cord injury have a tremendous human cost, it also has huge economic costs, and financial implications for the person who has it, their family, and general society. So, this is a big challenge. We’ve made great progress, but we’ve got a lot more work to do.”
Despite the amount of funding that supports basic research, few research discoveries achieve their potential. It requires on average a period of seventeen years before the discoveries reach the ultimate goal of improved quality of life and long-term healthcare outcomes.
“One of the challenges is the obstacles between getting something from laboratory to the bedside. Getting that clinical study done so you can determine efficacy. And then the secondary move from the bedside to worldwide – where you take something and you try to scale it so that it can actually influence and improve the lives of a lot more people.”
These are two of the key problems that need solving. The key will be in collaboration, providing the right incentives where researchers and entrepreneurs are working together, and particularly for those who have spinal cord injury to be involved at every step of the way.
“We need to get people with spinal cord injury involved, not only as subjects, but at the ideation phase. In the vision for the research – what is it going to achieve, how is it going to impact on them, how is it going to improve their health?”
After this phase, those with spinal cord injury need also be involved in the testing of the products, and the development of standards for hospitals, in the way they are treated in the health system, and then later on in the community.
“You can do everything right at the rehabilitation stage, but if you don’t have the right support and continue to rehabilitate in the community, you lose some of those benefits. It’s a team game that runs from the time of injury through to someone’s life in the community.”
Engaging Consumers
On top of all the exciting research and incredible ideas for commercialization, Mr. Barrable admits that the organization delivers its most meaningful work in the engagement of people with spinal cord injury in its methods.
“If we do that early, we do it well, and we do it consistently, it will elicit a much-improved outcome for them, in their health, in their wellbeing. This is something that people in organizations talk about, but they don’t necessarily do it with consistency. This is something that we are really striving for because we know it makes a difference.”
In the past, studies have been supported that look great methodologically and in terms of peer review, but unless they have relevancy to people with spinal cord injury, they are not going to make a difference in the long-term and on a large scale.
“That is where this is so critical,” Mr. Barrable says. “We’ve included people with spinal cord injury in our commercialization programs, where we incubate and we accelerate innovation, in addition to the research itself. This is central to our success.”
This approach defines the Institute as a new kind of charity. A lot of organizations focus only on research, innovation, or implementation – but Praxis does all three, with implementation being the key piece of this structure, to make sure that the ideas are put into use.
“Implementation is often forgotten, or not adequately resourced. As far as we know, we’re the only one doing all three. We’re an organization that’s taking responsibility for an outcome, not just for inputs or outputs.”
One of the new cohort members in Praxis’ SCI Incubate program is Canadian biotechnology company Spiderwort, which is revolutionizing tissue engineering and regenerative medicine with plant-based biomaterials that promote the repair and regeneration of the spinal cord. The company has just received a special approval by the FDA as a breakthrough technology.
“By creating an ecosystem for these companies, we can get them directly involved with people with spinal cord injuries so that we enhance their likelihood of success, and we know that at the end of the commercialization process there will be a customer and this technology will be available to people who can really benefit from it.”
The organization has recently recruited staff and volunteers that add to the important involvement of people with spinal cord injury, which has become so vital to the success of its programs.
“Richard Peter, for example, who is our Indigenous Peoples Liaison at the Institute, connects researchers with the people living with spinal cord injury in the First Nations community. Richard came to Praxis as a person with a spinal cord injury and a gold medal Paralympian, an outstanding individual who will continue to do great things with the Institute.”
Another of the organization’s new recruits is Senator Chantal Petitclerc, an internationally renowned Paralympian athlete and gold medalist, who joined the Institute’s Board of Directors in 2020.
“These are individuals that help enhance our team,” Mr. Barrable says, “and they will be helping by teaching us as well new things that we need to learn, and influencing the great work that the Institute does.”
With its vision for a world without paralysis after spinal cord injury and a commitment to engaging those with spinal cord injury to help forward its work, Praxis is doing wonderful things to improve lives across the globe. Find out more about Praxis Spinal Cord Institute by visiting praxisinstitute.org
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