General dependence upon, and the legitimacy of American medicine are rapidly eroding – and that’s just fine.
On second thought… as is the case with all realities, whether this fact is fine or not is really not the issue. As my father used to tell me when I was a young boy rankling against one of his questionable (in my mind) mandates, or dealing with some newly discovered wrongdoing or inconsistency in what I came to learn was at times an indifferent world, “it doesn’t matter if it is right or wrong – it’s so.”
Paul Starr, a Harvard sociologist, wrote the book The Social Transformation of American Medicine more than a quarter century ago. I firmly believe that American medicine is undergoing another social transformation right now, but relative to Starr’s findings – in reverse.
The book described in great detail the pathway that the enterprise of health care had taken from the early nineteenth century up to that time – from an informal home and community-based undertaking, to a huge and powerful industry. It was a landmark book, and despite its vintage, I would still recommend it to anyone that might want to know “how we got here from there”, or to those contemplating contemporary health care delivery strategy. I read about half of it as a medical student, and ended up putting it down as it didn’t make a great deal of sense to me at that time. I knew little to absolutely nothing about the structure of the health care delivery system and therefore had no contextual screen on which to project Starr’s insights. I was more concerned at that point in my life about things such as how to work a stethoscope, and how to effectively accumulate massive amounts of educational debt. However, I recently decided to dust it off and give it another shot, and thought it was both fascinating as well as amazingly prescient regarding what would actually happen in the years that followed its writing – from the mid 1980’s up to the present time. It certainly wasn’t pedestrian reading, but well worth the effort. As it turns out, I’m not the only person that thought it was worthwhile – it won the Pulitzer Prize for General Non-Fiction in 1984.
In the first section of the book, Starr commented on the mechanisms by which the health care industry became such a powerful enterprise, and suggested that it was not at all related simply to the influences of scientific discovery and altruism.
“From a relatively weak, traditional profession of minor economic significance, medicine has become a sprawling system of hospitals, clinics, health plans, insurance companies, and myriad other organizations employing a vast labor force. The transformation has not been propelled solely by the advance of science and the satisfaction of human needs.”
So if it was not primarily related to the march of biomedical science, and the desire to meet the needs of those potentially served, how did this happen? Like the development of all human enterprises over a long period of time, there are no simple explanations – social and economic forces, the development of governing structures and frameworks, and myriad other factors have to be considered. However, Starr goes to great lengths to promote the crucial role of the development of “authority”. He suggests that this was perhaps the most important organizing and catalyzing force in the development of the health care industry in America, and other industries as well here since the mid nineteenth century…
“The acceptance of professional authority was, in a sense, America’s cultural revolution, and like other revolutions, it threw new groups into power – in this case, power over experience as much as power over work and institutions.”
Starr suggested that the “twin pillars” on which medical authority came to be based, over a several-decades long process, were dependence and legitimacy. Medical technology was developed that replaced the need for the physician at times to even solicit a complaint from the patient – the only part of the exchange that those seeking care actually independently contribute. This sea change, as well as the incomprehensibility and displacement of these new technologies from the home to the professional setting required that the patient become increasingly, and in time almost completely dependent on the medical enterprise. Legitimacy was not only enhanced by the development of trust in training and resultant competence, as well as professional oversight of boards and societies, but also by the notion that professional information was only really accessible to practitioners. Accessibility could be defined both in terms of where medical knowledge and information could be found, as well as whether or not it could be comprehended.
American medicine would in time establish a very robust market to compete within itself, primarily for revenue generation, but there would be no market competition between provider and self-care factions. The medical-industrial complex did not want to compete with patients for control, or for power – this would imply a loss of authority – perhaps an erosion of dependence, legitimacy, or both. This is not to say that the development of authority, and the clear demarcation of roles between those providing and receiving care was not a positive development in its time – it was. Once the science progressed such that it actually was routinely having an impact on patient outcomes, as opposed to the hit or miss folk remedy approach carried out in most American homes – medical authority substantiated itself. Patients and patient’s families mostly abandoned previous homespun approaches, and embraced, as they should have, the promises of modern medicine. However beneficial the establishment and acceptance of authority was in the past to the therapeutic relationship; however, modern traditional health care is in fact now losing it, and this is threatening to create friction between the health care provider enterprise and its clientele in a time that is already charged and confusing for both.
I have been fascinated for some time with human characteristics and behaviors that we once thought were volitional, and have later found to actually be a part of our genetic imperative – developed over hundreds of thousands of years, and focused by the lens of evolution – environmental pressure, survival of the fittest traits and behaviors, and adaptation over time, or natural selection.
Will Durant, the historian who wrote the yet unparalleled and unfortunately unfinished The Story of Civilization – an eleven volume, ten thousand page accounting of recorded human history, once commented that when it came to human behavior that,
“Every vice was once a virtue, and may become respectable again, just as hatred become respectable in wartime.”
What he referred to was his proposal that there had been lain a very thin veneer on the violent mammal man, who in the not so distant past had to fight for food, for a mate, and for power in his group. What does this have to do with individual behaviors related to caring for the sick, and dealing with our own illnesses? The question I pose here is whether or not the early American model of health care – one that was centered in the home and on the wits and learning of the individual might not have actually been a “basic” drive. My assumption is that one would be hard-pressed to find a neurosurgeon, or an endocrinologist thirty thousand years ago, and that the desire to take control of one’s “medical” destiny might just be more akin to the natural than what has been foisted upon us these past one hundred years. We spent a long time worrying, scheming and experimenting in innumerable ways to increase our survival over the millennia without organized assistance. One hundred years is four human generations, and that is a nanosecond in human evolutionary time. Simply put, we are not likely biologically engineered to be dependent on someone else for monitoring, or maintaining our health.
When I was a busy surgeon, I would routinely ask post-operative patients on hospital rounds how they were feeling, as I would enter their rooms – some variation of the simple question, “how are you doing today?” Interestingly, one of the more reproducible responses was, “I don’t know… you’re the doctor – tell me.” There are early indications that as a species, our willing and dispassionate dependence on someone else to manage our health and tell us how we are feeling has peaked. In this country, this movement is perhaps augmented by our historically unprecedented adherence to the concept of individual liberty. Americans are buying up personal “diagnostic” devices in droves, and are accessing diagnostic information in a number of ways that would not have been possible even a few years ago. In the process, some of the mystery regarding medical technology, and the dependence associated with having to rely on someone else to provide this information is dissipating, and the Quantified Self movement is an incredibly powerful case in point. It seeks to encourage individuals to collect data about their lives, and their bodies, and to either make their own inferences from that data, or to perhaps provide that data to someone else that might be able to help them. Some have given other names to the endeavors that the movement promotes – such as life-logging” or “body-hacking”. Quantified Self was formalized with a website and scheduled forums by Gary Wolf and Kevin Kelly, both editors at Wired magazine, and now has hundreds of specific interest groups participating in more than thirty countries. During a TED talk in 2012, Wolf commented on why becoming a Quantified Self might be important…
“we know that numbers are useful to us when we advertise, manage, govern, search… they’re (also) useful when we reflect, learn, remember and want to improve”
On the Quantified Self website, there are countless videos demonstrating how individuals have used data to improve their own health, or obtain insights about their own disease processes. One of the first I viewed was one posted there by Sky Christopherson. Sky was an American Olympic trial velodrome cycling champion in his twenties, who a few years after his “first” tenure as an elite athlete began to experience declining health, with little effective help from the traditional delivery system. Once he exhausted all of the traditional avenues, he tried monitoring a number of his own bodily functions and activities somewhat in desperation (following hearing Dr. Eric Topol, futurist cardiologist and author of The Creative Destruction of Medicine speak at a TED conference about the potential for personal wireless monitoring devices) and he found that he was having difficulty sleeping when the ambient temperature in his bedroom rose to a certain level. He placed a cooling blanket on his bed, felt better, started cycling again, and at age 35, after making a handful of other changes related to his new self-actualization, set a world record.
In an additional admittedly extreme, but powerfully illustrative example, I had the opportunity to listen to Larry Smarr’s presentation at TEDMED 2013 just this past month in Washington, D.C. Larry is not necessarily an “Everyman”, as an accomplished physicist and advanced computing expert at U. C. San Diego, but he was not anything approximating a trained health care provider either. He had been experiencing problems with his gastrointestinal tract for some time, and underwent an extensive conventional workup with labwork, imaging and endoscopy – but to no avail. He decided to send his stool, after he couldn’t interest his own physician in doing so, for some laboratory and “microbiome” analyses that were commercially available – whereby the relative numbers and types of bacteria residing “there” are enumerated. Long story short, using the results he received, in addition to some supercomputing resources he had available to him in his day job, he himself determined that the chemical profile and bacterial constituency were most consistent with Crohn’s Disease. He changed doctors, and was treated with a combination of therapies designed to improve his condition. He commented at the end of his presentation at TEDMED…
“I now know what my state is. I know I’m a long way from home… while I don’t know to get back home, I know where home is. Because of the big data, and because of the ability to analyse it, we’ve got hope.”
What you did not hear in that statement was, “traditional medicine found out what was wrong with me, and because of that, I have hope.”
Ian Li, a user interface designer at Google, was interviewed at the most recent 2103 Quantified Self European Conference, and sums this movement up well…
“knowing that there is a problem is the first step in fixing a problem… hopefully, helping people become more self aware. Now that you’re self aware, how do you change your behavior?”
Another interesting example that deserves mention here is Patients Like Me. Patients Like Me is a forum where individuals can join similar disease communities, share experiences and symptoms, treatments being used, drug side effects and a host of other information. In addition, there are research projects that are basically performed by the patients “themselves”, by self-reporting all of the above. One of its offerings is a blog entitled “The Value of Openness”, and it states that Patients Like Me…
“... is people with every type of condition (who) are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research”
The focus here is not on the need for traditional medicine to “tell you how you are feeling” but on “self-awareness”. We have always thought in medicine that knowing the name of the beast is the first step to contemplating how to thwart it. The thing that is different now is that individuals are willing, and seemingly very interested – perhaps due to how we have become programmed over the millennia, to try to name the beast themselves, and at times to attack it alone. There is a lot more to come to support this claim, as genetic information is now being passed directly to consumers by companies like 23andme and others, and the ability to own your own hand-held ultrasound device – one that attaches to your smart phone and will allow you to peer into your own body, is in the very foreseeable future. Sure, Larry Smarr, the physicist that analyzed his own feces may not be able to look at the image on his smart phone ultrasound screen and tell you exactly what he is seeing, or what it means. However, I am guessing that Larry will tell you that some software being developed in his department at UC San Diego or elsewhere that will accompany that app may be able to do so in time. Like it or not, the era of total dependence on the traditional delivery system to tell you what is wrong with you and view you as a passive participant the battles that are waged against your own illnesses has long since passed.
Ryan Bradley, senior editor at Fortune asked Jamie Heywood, one of the founders of Patients Like Me, in an April 2013 interview if there was about to be “an explosion in this industry soon, a revolution..?” His response?
“People need to understand how little we know about health care and biology. Today, the person who can tell you something actionable is the doctor. That’s not going to last much longer because data is going to change from observations to big data that’s evaluated in real time. How is that going to affect the medical space? Who will be best able to interpret your MRI? The radiologist? Or a computer? It’s just a question of time.
The second pillar of medical authority, according to Starr, is the designation of legitimacy. There should be little debate regarding the fact that over the past century American medical providers, and the industry in which they work have become “legitimate”, but what about the underpinnings of that designation – are they all still present? If we include the acquisition and use of truly proprietary knowledge – knowledge only accessible to those involved in the provision of care – the answer is a clear “no”. When I was a medical student, the only way to obtain the information that I was learning was to be my classmate, or to somehow find, gain admission to, and know your way around in a local medical school library. There was in fact no, WebMD or mayoclinic.org, no http://www.ncbi.nlm.nih.gov/pubmed (Pubmed) website on which to search (as did Larry Smarr to compare his microbiome to those in the biomedical literature), and no Amazon.com from which to purchase medical textbooks. As Eric Topol tells us, in The Creative Destruction of Medicine,
“WebMd alone gets more than eighty million unique visitors each month. More than 8 out of 10 Americans have looked up health related questions on the Web. The latest data from the Centers for Disease Control and Prevention showed that 50 percent of adults searched health information on the Internet in the past year…”
Medical information is no longer proprietary. Anyone with a computer and very little savvy can review the symptoms, signs, laboratory evaluation and genetic causation for a particular disease process in less time than it takes to make a cup of coffee (okay, maybe not quite as fast as my “personal coffee device”, a Keurig, but close).
The popular press has gotten into the medical information and informing act as well, and the lines between the “medical literature”, as the various peer-reviewed journals were referred to in the past, and the informed lay media have blurred. Eric Topol notes this in The Creative Destruction…,
“…top tier media coverage of new medical studies and discoveries demonstrates remarkable convergence on the way information is reported. In this book I often cite a New York Times or Wall Street Journal article alongside the actual paper published in Nature, Science or the New England Journal of Medicine. Over time, journalists have begun to use more scientific language, and cover topics in depth approaching that of scientific articles… we are seeing increasing respect for the consumer’s ability to understand the principal results and implications. That trend will surely continue…”
So medical authority is eroding rapidly in this country, if you agree with my arguments, and adhere to Starr’s suggestion that dependence and legitimacy constitute the foundation on which authority is based upon. So what, if anything, does this mean for American health care? I am certainly not suggesting that we ditch all that is valuable about modern medicine, or that we return to a time when we were trying to cure our own diseases with home remedies and living lives, as Thomas Hobbes suggested, free from the advances of biomedical science and other similar accouterments of civilization that were as a result “nasty, brutish and short.” What I am offering up here is an opportunity – an opportunity to capitalize on a “social transformation of American medicine – in reverse.”
It is true that many patients will continue to be dependent on medical providers to tell them how they “are doing”, and to provide them with information that they can neither locate nor comprehend. It is also true that few people owned a personal computer one generation ago, and that two generations ago, many Americans did not know how to operate an automobile. My claim is that human beings are likely genetically programmed to want to take control; if possible, of their corporeal destinies, and that these developments were to perhaps be expected.
Hannah Arendt, in an essay on the concept of authority, once commented…
“Its loss is tantamount to the loss of the groundwork of the world… but the loss of worldly permanence and reliability – which politically is identical to the loss of authority – does not entail, at least not necessarily the loss of the human capacity for building, preserving and caring…”
Some involved in the traditional health care delivery system will resist these realities and view them as a threat, and possibly “wrong”. Others will embrace them as positive and “right” and work diligently to understand how to harness their power and momentum, and perhaps creatively channel them into a new concept of managing “health”.
My father would tell them both that reality is reality, and all that matters is how you respond. The future of health care delivery, and the capacity for building, preserving, and caring for those in need, will likely belong to those that respond in the latter fashion.