The General and the Visionary
Influential Figures Call for Reforms to Speed Treatment for Brain Illness, Injury
Posted April 1, 2015
VANCOUVER, B.C. – March 31, 2015 — By Bill Wilkerson, Mental Health International Executive Chairman
Two influential voices are now calling for brain scientists to work together and be less competitive to accelerate advances in our knowledge and treatment of brain diseases and injuries.
Retired U.S. General Peter Chiarelli, one of the great military leaders of his generation, has dedicated his retirement from military service to identifying and treating post-traumatic stress (PTS) and traumatic brain injury (TBI). It’s a mission he started while still in uniform.
Chiarelli leads a U.S.-based non-profit organization called One Mind that believes in “global innovation for brain heath,” and which was created to help raise awareness and eliminate the stigma of brain disease. He sees One Mind as a leader in “revolutionizing research and funding through collaboration.”
Toronto-based Don Tapscott, a world authority on the digital age, best-selling author and senior advisor to the World Economic Forum, agrees a revolution is called for.
With Chiarelli, he advocates for an “open science” approach to brain research, an approach that is already practiced in other areas of technology and even in competitive industries.
The current system for researching and reporting scientific discoveries has scientists often working in isolated silos, keeping their successes under wraps until it’s strategically shrewd to share them with other scientists and the public, and keeping their failures under wraps indefinitely.
The result: fewer and slower gains in translating brain science discoveries into actual benefits for the patient.
Peter Chiarelli comes to brain research not through medical or business channels but through military service at the highest level. As vice-chief of staff of the U.S. Army from 2008 until early 2012, he served 24 months in Iraq and saw the devastation caused by post-traumatic stress and traumatic brain injury among soldiers. He was a powerful voice for change in the U.S. military, responding to the needs of soldiers facing these injuries. He is now committed to making this “invisible disease, visible” and eliminating the stigma around brain illness.
He foresees the advent of “global partnerships” among science, government, philanthropy and business to “accelerate large-scale research through ‘open science’ data-sharing and collaboration.”
One Mind has already moved in the direction of accelerating “the discovery of better diagnostics, treatments and cures.” The organization currently supports two clinical studies on post-traumatic stress and traumatic brain injury involving nearly 10,000 patients at more than 50 research centres in the United States and Europe. One Mind has also created an interactive data-exchange portal for clinical collaboration, data-sharing and data-mining on a massive scale.
Chiarelli says the principles of “open science” — data sharing and scientific collaboration — will accelerate diagnostics, treatment and cures across a wide range of disorders and injuries, including post-traumatic stress and traumatic brain injury, depression, Parkinson’s disease, ALS, dementia including Alzheimer’s disease, and addiction.
“What led me down this path was the disagreement I witnessed among professionals as to what constitutes post-traumatic stress or depression, the horrible diagnostic tools we have at our disposal, and the tremendous number of folks that we have who are suffering from this,” Chiarelli said in a February interview in Ottawa, where he spoke at the second annual conference of the Canadian Depression Research and Intervention Network.
He stressed, “we simply don’t understand the biology of the brain and, as a result, doctors have poor tools for detecting, labelling and treating mental conditions of all kinds.”
Chiarelli is convinced that the only way to further understand the brain, and to find solutions to brain-based problems, is by sharing data and collaborating on a massive scale. That’s the basic philosophy behind One Mind, which counts former U.S. Congressman Patrick J. Kennedy II as a founder.
One Mind funds only researchers who follow the principles of open science; they agree to share their data and their databases, engage in large and collaborative research, and don’t allow intellectual property — the ownership of a device or a drug — to delay or discourage advances toward improvements in patient treatment.
Chiarelli argues that because “the brain is harder than anything else we’ve ever taken on,” the only way to truly understand it and make real progress on diagnoses and treatment is by encouraging scientists worldwide to collaborate and not only share their successes but their failures as well.
The AIDS Model
Chiarelli compares the work that needs to be done in brain research to how AIDS was tackled in the 1990s. At a time when there was no known cure for AIDS, the U.S. Congress created a large public/private partnership of researchers and pharmaceutical companies to study and solve what was then a death sentence.
“The U.S. Congress said, ‘Until we get far enough down the road to understand what this disease is, you’re all going to work together. When you have a failure, you’re going to share that, so that nobody else wastes time and money going down that road. And when you have a success, you’re going to share that, too,’” Chiarelli said. “And by doing that, we discovered the virus.”
Once the virus was known, scientists and pharmaceutical companies were free to monetize the findings in different ways — by creating short-term treatments, long-term treatments or whatever else that would help people who had the human immunodeficiency virus, which led to AIDS.
Field is Fractured
Although there have been exciting breakthroughs in brain research in recent years, the field remains largely fractured. Scientists are working in silos, encouraged by an academic system that lacks accountability and prizes intellectual property ownership.
The financial incentives for brain research are inadequate, perverse or both. Today, we have the spectacle of many global pharmaceutical companies pulling out of neuroscientific research, and the pipeline of new therapies needed for improved treatment of brain diseases is at risk of drying up.
Notably, the sponsor of this information campaign, Lundbeck Canada, and its affiliates worldwide in some 60 countries, is staying the course, specializing in diseases and injuries of the central nervous system.
“You can’t endow enough academic chairs or get enough smart people in one place to understand the brain,” Chiarelli said. “The only way we’re going to do this is through collaborative networks that are enabled with the tools they need to analyze huge data sets that will lead us to better diagnostics and, some day, cures.”
In his best-selling books, Don Tapscott has touted the use of technology in business, government and society to serve the public good. For many years he has championed a collaborative model of science, recently focusing on brain science. He is not alone in arguing that big changes are required.
At January’s World Economic Forum in Davos, Switzerland, which Tapscott attended, one of the biggest themes on the agenda this year was new scientific developments related to the brain.
Tapscott believes that if researchers would collaborate and harness the power of the worldwide web and global data banks, real progress could be made in understanding the brain and how to treat brain injuries and illnesses.
“Is it conceivable that there could be global collaboration in critical areas of psychiatric and brain research with the goal of breaking the logjam and achieving breakthroughs?” Tapscott asks. “Through global collaboration could we create the equivalent of a ‘human genome’ or Linux of the brain?”
Competitive Industries Share Data
Tapscott points out that data-sharing and collaboration is already happening in many parts of the economy. For instance, American athletic shoe and clothing company Nike has placed 400 patents relating to sustainability into the GreenXchange, a giant think tank for corporate sustainability. Car companies co-operate in building some technologies, such as hydrogen engines, and music companies place their artists’ recordings in a pool where they can be streamed by music lovers. And computer companies, all of which used to compete on the basis of their operating systems, now all embrace Linux, an operating system that is collaboratively developed and made available for use by all.
In each of these scenarios capitalist competition remains, with players competing on an elevated playing field.
“In doing so they compete on a higher level,” Tapscott said. “A rising tide lifts all boats.”
Tapscott Principles of Collaboration
To encourage progress in the field of brain research, at the 5th U.S./Canada Forum on Mental Health and Productivity, Tapscott set out five “Principles for a New Era of Collaboration,” aimed at academics, scientists, business and government. The principles are:
- Collaboration – Using the Internet as a global computational platform that encourages working together by reducing costs, enabling close working relationships, sharing information and creating new modus operandi for whole institutions.
- Openness – Opening up previously closed institutions in order to increase value by lowering research costs and building trust and loyalty.
- Sharing – Encouraging mental health researchers to break down the silos that currently separate them and encouraging drug companies to share pre-competitive data.
- Interdependence – Insisting that the pillars of society — business, government, civil society, academics and individuals — work together.
- Integrity – Convincing all parties that being honest, considerate and accountable — not just to their institutions but to the ultimate user, the patient — will help change mental health research for the better.
While these principles won’t become common practices right away, Tapscott is confident that they will, in fact, take root. For one thing, young scientists entering universities today have grown up with the Internet and are familiar with the idea of conversing and collaborating with colleagues around the world. It’s natural, Tapscott contends, for these scientists of tomorrow to find ways to re-invent the whole model of academic research.
“This now is like a perfect storm causing the whole world of psychiatric research to rethink some very fundamental stuff,” Tapscott said. “It’s a very exciting time.”
No Breakthroughs in Decades
Scientific leaders recognize that there have not been scientific breakthroughs in treating brain-based mental disorders for many years. Why is this? Is the brain too complex to understand? Is the challenge just too great?
Or, as Don Tapscott asks, “Have we, as a global research community, been approaching it wrong? And through what process can science identify fundamental, common, neural pathways leading to symptoms of illness and cutting across disorders? Using the old model?”
The old model that has been around for the better part of a century and at its heart is a funding, publishing and incentive system where individual scientists within and between institutions compete for grant money and work in relative isolation.
“Some time later, they produce papers that are peer reviewed and are then published by a separate industry. In the private sector a similar model was employed where pharmaceutical companies compete, duplicate research, and don’t share data,” Tapscott said. “The upshot is that the world of psychiatric research is divided into silos, lacking collaboration and the sharing of data, insights and intellectual property.”
Instead, Tapscott would like to see more collaboration among scientists and pharmaceutical companies, with the good of the patient in mind.
Models of this are emerging:
The Psychiatric Genomics Consortium, in a collaborative project, identified 108 genetic markers, most of which were previously unknown, associated with the risk of developing schizophrenia, potentially leading to new treatments. A total of 55 data sets, pooled from more than 40 different contributors, were needed to conduct the analysis.
Eight leading Alzheimer’s research centres across the U.S. and Canada collaborated on a study on improving symptoms of agitation that commonly occur with Alzheimer’s disease, and alleviating caregivers’ stress. A paper on the topic, published in the Journal of the American Medical Association, was named one of the 10 most noteworthy neurology studies of 2014.
The fact is, scientists themselves are saying they must collaborate, work together, pool and share data. That data should include results of clinical trials even when the placebo wins. Society has much to learn from all research projects, not just the successful ones.
For science — and those who design the incentives for research — the choice is pretty clear: silos or breakthrough progress?
About One Mind
One Mind is an independent, 501(c)(3) non-profit organization dedicated to benefiting all affected by brain illness and injury through fostering fundamental changes that will radically accelerate the development and implementation of improved diagnostics, treatments, and cures; while eliminating the stigma. One Mind believes in open science principles and creates global public-private partnerships between governmental, corporate, scientific, and philanthropic communities. Visit us at www.onemind.org or follow us via Twitter or Facebook.
Office: +1 206.946.1768