Disruption. It’s a word you hear all the time if you listen to business gurus or political consultants. A product is disruptive when it innovates in such a way that it upsets a market — think of Uber and the effect it had on transportation or Airbnb and how it has changed both the hotel and the housing rental industries.
In more general terms, a disruption is some kind of disturbance — it’s something that interrupts an ongoing process. That’s why I got excited when Lyn Jakeman announced last fall that she was part of a team organizing a conference called SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research. Jakeman is the neuroscientist/administrator who directs The National Institute of Neurological Disorders and Stroke, the program at the National Institutes of Health aimed at spinal cord injury research.
The conference took place February 12-13 in Bethesda, Maryland, sponsored and hosted by NIH. (See Resources for video link.)
As Jakeman explained it back in October, the idea was to invite representatives of all the groups that play a part in what might be called the “cure/ care industry.” Those who design devices, investigate different kinds of cells, engineer implants, capture data, provide physical therapy, perform surgery or work as caregivers would join together to find ways to improve function and quality of life for people living with paralysis.
If ever there was an industry that could use some disruption, SCI research is it. Why? Because in spite of more than $100 million going into this project annually just in the United States, we don’t have anything. There is not a single medication or device or cellular therapy approved by the FDA specifically for use by people with SCI. Zero.
Early on in the first day, United Spinal member and cure advocate Rob Wudlick rolled his power chair up to the microphone. His presence there was more than the usual tokenism scenario, in which a person living with the injury describes how they got hurt and what their days are like now. Those talks — always well-intentioned and powerful — are meant to create, however briefly, a sense of empathy and urgency for the listening researchers.
Wudlick’s talk certainly did that. And for me, it also did much more. There was a moment in it that kept tugging at the back of my mind as I watched the rest of the presentations. Wudlick described his injury day. He and a group of friends stopped for lunch 19 days into a 25-day rafting trip down the Colorado River in the Grand Canyon. He went to fetch something off his boat when a friend called out that a piece of trash had fallen into the river. It was 90 degrees, the water was deep, and he dove. We know how that story ends: C4-5. ASIA B.
What caught my attention was what happened next. Wudlick, a trained emergency medical tech, was face down and immobile in the water. After a moment of wondering if he was messing with them, his friends came to his aid. Once he was flipped over and breathing, he proceeded to tell them how to get him safely to the beach. How to keep his head stabilized while they pulled an aluminum table off the boat to form a backboard. How to move him. How to check his vitals. What to say when they called for the helicopter.
It was a scene I still hadn’t shaken off, days later.
Lots to Discuss
Spinal cord injury research is a vigorous beast — one with many disconnected tentacles and no brain. There’s a lot of moving around, but it’s disorganized movement that slouches toward no particular destination. That’s why the idea of a conference to bring various segments of this monster into the same room seemed — to be blunt — way overdue. On the first morning, Jakeman explained the goals her group had defined:
• Review the current state of the science.
• Break down barriers between different groups and get them talking to one another.
• Name priorities for research and development going forward.
To that end, the organizers had set up five panels of scientists, plus one from our community. The scientists were an impressive, highly educated and highly productive bunch, with dozens of doctorates and hundreds of published papers among them. These people represented, in every sense, the SCI research system at its very best. The members of these panels held long phone calls prior to the conference, during which they worked out plans for their joint presentations. The groups focused on Acute Post-Injury, Repair, Plasticity and Regeneration, Sub-Acute and Chronic, Neuromodulation, Health and Secondary Health Effects, and Prosthetics and Robotics.
It’s a familiar list for those of us who have been trying to follow the direction of research being undertaken on our behalf. It’s also reflective of how much has changed in the last five years or so — and how much has not. Scientists work on acute damage for two reasons: It’s cheapest in terms of animal models, and there is still much to be learned about what is happening inside a recently damaged cord.
The second item on that list, repair of the chronically-injured cord, is the most difficult and complicated task, by far, and the one that will change lives the most dramatically if it can be done. The third panel focused on epidural and transcutaneous stimulation, currently being tested on dozens of men and women with spinal injuries in labs all over the United States and in Switzerland. The fourth panel addressed the need to understand how a damaged cord impacts health overall, and the final one gave us a window into the work of engineers who are busy designing ways to help that don’t involve the damaged cord at all.
Each scientific panel had a chairperson, three speakers and two people to facilitate question and answer sessions once the presentation was done. These took place, over and over — an hour and 15 minutes at a pop — for two long days.
If this sounds exhausting, it was. A whole lot of very complex and inter-related issues present themselves when you move to the 40,000-foot level and try to take in the whole landscape at once.
The Greatest Resource
When Jakeman described the event’s goals on the first day, she used a slide to illustrate the problem as she saw it. It was a picture of a group of five silos, each self-contained and unconnected to the others. The silos were labeled clinicians, pre-clinical researchers, health¬care providers, engineers and industry. To her mind, this was the problem — these people weren’t talking to one another. Off to one side of the image, floating in the empty blue sky, were the words, “People with SCI.” People with SCI aren’t in any of the silos. People with SCI are outside the system of silos. People with SCI are floating, useless and impotent, somewhere out of range.
Rob Wudlick, in the moment of his extremity, wasn’t floating uselessly. He was directing the action. He was using his knowledge and authority to save his own life, with the help of his friends. That is the reason for advocacy, both for faster cures and for better care. Barry Munro, a wheelchair-using advocate from the Canadian Spinal Research Organization, reminded the scientists that people living with SCI are a readily-available resource, with thousands of years of knowledge about this injury to contribute. What if we could get inside those silos, not once a year or for one panel, but every day? What if we could routinely help direct the course of research to lead efficiently to better care and faster cures?
Now that would be disruptive.
** This post was originally published on http://www.newmobility.com/2019/04/launching-a-decade-of-disruption/