A couple of days ago, a friend sent me a chapter from a book that he knew would greatly interest me. The chapter is entitled, “Chronic Disease, New Thinking, and Outlaw Innovation: Patients on the Edge in the Knowledge Commons.”[i] Well, in fact, I was even more interested than he knew: the author, Dr. Stephen Flowers, and I had corresponded about 18 months ago in regards to a letter he’d written to the editor of the journal, Nature, several years back. More on that later.
First, a summary of the chapter: Dr. Flowers, who is at Kent University in the UK, describes a fundamental problem in medicine: the disconnect between the lofty and hallowed halls of research science and the people actually suffering from debilitating and life threatening illnesses. Medical innovation takes decades. When faced with an incurable, often untreatable, illness in one’s self or a loved one, we the people are faced with a choice: do nothing (i.e. which all too often means listening to what our doctors’ currently offer that is “approved”) or do something (i.e. educating ourselves via the “knowledge commons” (the public knowledge bank), and often turning to unapproved therapies that are known to work but that are outside the mainstream medical community.)
As Dr. Flowers says:
“This regulatory environment, though intended for consumer protection, often creates tensions between the patient – the user of the treatment – and the medical professional, who may be discouraged or forbidden from offering promising experimental therapies that have not gone through the full regulatory process. This tension may be particularly serious in the context of chronic diseases, in which therapies may require a decade or more of research before they can begin the process of regulatory approval, which may itself take many more years.
Confronted with this situation, some patients decide that they simply cannot afford to wait. They determine to sidestep regulated processes, draw on published scientific research, and attempt to create their own therapies. These activist patients engage in what we term “outlaw innovation,” which differs from much of the user innovation studied in prior research in its relationship to mainstream innovation. Newly created knowledge obtained by outlaw innovation is widely shared with other patients, but mainstream medical research is unable to draw upon it. The picture that emerges from our analysis is of a medical research system whose inflexibility means that it is unable to draw on vibrant sources of new knowledge that are being created by activist patients – the users of medical therapies – who have taken their treatment into their own hands.”
To provide an example, Dr. Flowers uses those many individuals in the Crohn’s Disease community who have turned to using helminthic therapy to treat themselves. I have written before about the horror of the medications available to those with IBD. And thus, faced with a choice of using these, faced too, as Dr. Flowers points out, with an 80% likelihood of needing surgery tor resection the intestines (to eliminate blockages from internal scarring), many people look for better options. These “outlaws,” recognizing that, “…a significant body of mainstream scientific research now points to the presence of a possible therapeutic link between helminths and Crohn’s disease,” take matters into their own hands.
Let me point out that IBD is just one case of a community going renegade. I have met devoted helminth users from “disease” groups ranging from autism to alopecia, from Parkinson’s to Lyme, and many, many more. They all have one thing in common: a disease for which medicine currently offers no known treatment.
Dr. Flowers goes on to say that this vast body of information, freely shared by these well-educated outlaws, is currently unusable by a medical system that has, “…no mechanism for learning from this outlaw knowledge or incorporating it into the ongoing stream of research,” and, thus, this detailed and informative clinical data – this “outlaw knowledge” – is lost to science.
As I mentioned earlier, I first came across Dr. Flowers’ name in a letter to the editor he’d written back in 2013.[ii] He was responding to an article written by Dr. Joel Weinstock, an American gastroenterologist who was one of the first to use helminths to treat disease. I was very excited to read Dr. F’s response because, in fact, he proposes a solution to this very problem: the inability of the medical establishment to make use of bottom up (patient derived) data. He, and fellow author, Dr. Hopkins, state, “ We contend that using a pseudo-pharmaceutical process to evaluate helminth therapeutics — which typically costs millions of dollars and takes more than a decade to pass through clinical trials — is not the only way…A different approach to helminth therapeutics might be to allow patients to help with development, using their insight and evidence in a revised model that better reflects patient behaviour and capabilities.”
Call me crazy but, is it not criminal (if you’ll forgive the expression) that this vast body of legitimate medical data goes to waste, while people suffer, simply because we persist in doing things the way they’ve always been done?
[i] Flowers, S. (2017). Chronic Disease, New Thinking, and Outlaw Innovation: Patients on the Edge in the Knowledge Commons. In K. Strandburg, B. Frischmann, & M. Madison (Eds.), Governing Medical Knowledge Commons (Cambridge Studies on Governing Knowledge Commons, pp. 326-347). Cambridge: Cambridge University Press. doi:10.1017/9781316544587.015
[ii] Flowers, S, Hopkins, M. Patients self-treat with parasitic worms. [Letter to the Editor]. Nature. 2013. 493: 163.