Getting the Neurofeedback Word Out
Getting the Neurofeedback Word Out – Why It’s Important and Some Thoughts On How To Do It.
About twenty years ago, on a Saturday morning in a conference room at Swedish Hospital in Seattle, I listened to Joel Lubar’s methodical six hour presentation of the results of his research demonstrating that neurofeedback is a useful treatment for ADD and ADHD. While I was very impressed by his presentation, I was equally skeptical.
“Why, if this is such great stuff, doesn’t everyone know about this? And if this is so good, why aren’t there large studies?” I thought to myself at the time.
Now, twenty years later, not much has changed.
It has taken far too much time to achieve even the marginal acceptance of neurofeedback that we have seen to date. This lack of acceptance has resulted in a huge clinical opportunity cost to the world. The neurofeedback community can – and should – do something about it.
The early published research of Barry Sterman and Joel Lubar, later studies like that of Vince Monastra et al, and excellent books such as Jim Robbins’ A Symphony in the Brain: The Evolution of the New Brain Wave Biofeedback have done little to change the situation. Despite these good efforts, neurofeedback is far from being widely known about or accepted. After all this time, most people do not know about neurofeedback and most gatekeeper professionals and opinion-shaping academics minimize or dismiss its value.
Anyone who has done competent neurofeedback work for any length of time knows in her bones the opportunity we have of substantially helping with many challenging problems. ADD, traumatic brain injury, depression, anxiety, PTSD and many more problems are frequently ameliorated with neurofeedback – often when other treatment approaches have provided little or no benefit.
Although those of us who provide this service know that while neurofeedback presents the potential of great – sometimes goose-bumping – benefit, even now, few people avail themselves of it. More than twenty years after I heard Joel Lubar speak, only a tiny fraction of those who might benefit from neurofeedback even know what it is. Those who do, if they inquire about its value, are often discouraged by health-care professionals and academics who sniff at neurofeedback research, decrying it as too small, not controlled, not double-blinded, etc.
Economists describe the concept of opportunity cost as the benefits that might have been reaped by taking an alternative action. With regard to the neurofeedback field, consider the extraordinary potential of neurofeedback, and then consider how many more people would have benefited if twenty years ago the world had truly understood its value.
In my opinion, the inescapable conclusion is that under-utilization of neurofeedback has resulted in an enormous clinical opportunity cost. We (the neurofeedback community) can no longer sit by waiting for the world to come around to recognizing our truth while this cost continues to mount.
Here’s one perspective: what if, tomorrow, some force rendered all antibiotics useless? Each day that passed without a remedy to this problem would result in illness and suffering that would not have occurred had the antibiotics continued to work. If such a thing happened, there would certainly be a concerted, worldwide effort to fix the problem.
By contrast, if all neurofeedback services were rendered ineffective tomorrow, would the world even yawn?
I suggest that the neurofeedback community mount a unified effort to get the neurofeedback word out, using a two-pronged approach. We need to generate larger-scale, more conventionally convincing (from the gatekeeper’s perspective) research. At the same time, we need to more effectively take our message to the public, thereby circumventing that part of the medical and academic community that may persist in refusing to open its eyes, regardless of the evidence of efficacy presented.
There is a crying need for more and better research. About twenty years ago, not long after I started providing neurofeedback, I had lunch with a neurologist who specialized in treating seizure disorders. I shared information about Barry Sterman’s multiple studies in refereed medical journals, expecting that this neurologist would either know about, or be interested in, Sterman’s studies demonstrating neurofeedback’s value in the treatment of some forms of seizures. My expectations were not met.
I provided psychologist colleagues with copies of several of Lubar’s studies demonstrating neurofeedback’s promise for ADD and ADHD. I anticipated that they would be excited, perhaps even eager, to learn more. Instead, their response was an almost disdainful dismissal of the studies, as if anything other than a large-scale, controlled, blinded study was slightly unsavory.
Since then I have been optimistic, expecting that the gradual accumulation of studies demonstrating neurofeedback’s worth would win the day. For years I have believed that this tyranny of the scientific method, as I have come to think of it – where the perfect is often the enemy of the good – would be met on the field of academic battle and overcome by repeated barrages of research, albeit, for the most part, smaller studies.
For years I have believed that we would meet the academics on their own intellectual battleground. The problem, history has demonstrated, is that the academic (and medical) community has demanded cannons – and we, for the most part, have responded with popguns.
What this means, I believe, is that we can no long assume that the gatekeepers will be persuaded by relatively small studies. We can no longer turn blind eyes to the immense collective benefit that would result if the gatekeepers both fully recognized the value of our work and, in an unbiased manner, communicated about it. This suggests, I think, the necessity of our mounting a concerted effort to produce and deliver studies that will satisfy the gatekeepers on their own terms. We need to do this because of the continuing, ever increasing, lost opportunity cost of not doing so.
How can we finance this research? What if every neurofeedback therapist donated one-half percent of her last year’s income to the effort? Might not some corporations be persuaded to match our contributions? How about if many of us donated fifty hours of time to these research efforts? And what if we were to ask neurofeedback companies to provide equipment?
Professionals donating their time could form groups that would design studies and, perhaps, perform these studies. However, time donated might take us only so far: a small percentage of income donated by each of us would allow for the creation and execution of the types of larger-scale studies that have been demanded.
There are other approaches to research that could help. I have written elsewhere about how the Internet, by allowing us to so quickly exchange information, and by providing near instantaneous feedback about ideas, equipment and protocols, has greatly accelerated both the development of the neurofeedback field and the effectiveness of what we do.
Use of the Internet can facilitate new approaches to research. Being many years out of graduate school, I have not kept up with advances in statistics, but I have long been impressed by the potential persuasive power of meta-analysis studies (an approach that combines into proof, or disproof, of a given hypothesis the results of several, or many, studies). It seems to me that any reasonable person looking at the totality of a large number of small studies should be convinced of the value of an approach, even though, perhaps, no one small study is convincing.
To date, however, meta-analysis studies have not won the day. This has led me to consider whether in the same way that the Internet has facilitated the development of neurofeedback, the Internet might also be used to create new approaches to the large-scale generation, collation and analysis of outcome data, creating much more sophisticated meta-analysis studies. These would be, essentially, meta-analysis studies on steroids. Such new approaches to research might be both relatively quick to conduct and persuasive to people who have in the past demanded more formal and larger independent studies.
Consider the following: what if a group discovered a magic elixir that could significantly help people suffering from many debilitating clinical problems? Further suppose that alternative-to-elixir forces worked to discourage its use, resulting in the world receiving little benefit from the elixir’s powers.
Knowing the elixir’s worth to the world, would the situation not demand that the elixir group do everything possible to get the message out?
To significantly increase neurofeedback utilization, the second initiative I suggest is that we more effectively take our message to the consumer. Just one of many possibilities: every day we see pharmaceutical company television commercials asking consumers to seek specific medications from their physicians. I think that the neurofeedback community should take this page from the pharmaceutical industry’s playbook.
Why should we not create and take directly to the public much more effective messages? Part of the money we donate could be used to create high-quality, professional public relation pieces. Part of the time we volunteer could be used to assist professional public relations professionals in the creation of promotional approaches.
We could also utilize the newest and ever-emerging forms of social networking (Facebook, Twitter, etc.) to get the word out. And should it not be possible for our professional societies to increase the thought, effort and resources that they have to date put into this effort?
In Victorian times perhaps one-third of children died for lack of the immunizations in common use today. The introduction of early vaccinations dramatically reduced these premature deaths. Today, we have millions of people suffering from many ailments – many of them tremendously debilitating – who could be helped by neurofeedback. Most of these people are not being helped because of inadequate information – and misinformation – about what we do. Daily, in ways invisible to most of us, the clinical opportunity cost associated with the under-utilization of neurofeedback mounts.
I believe that we can and should contribute more of our intelligence, our time and our resources to further refining and getting our message out.
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