The Ethics of Big Data Workers

A new study was published in the Proceedings of the National Academy of Sciences of the United States of America (PNAS). The study is titled “Experimental evidence of massive-scale emotional contagion through social networks”, and it analyzes an experiment on Facebook users conducted by Facebook, in collaboration with researchers from UCSF and Cornell, almost two years ago. The experiment was a success, as it showed that Facebook was able to alter the emotional state of its users by making subtle and deliberate changes to the content users were shown in their news feeds. The study was subsequently edited for publishing by a Princeton professor, and accepted for publication by the prestigious National Academies, which by the way include the Institute of Medicine (IOM).

The experiment “manipulated” the News Feeds of 689,003 people, randomly selected, and then measured the effect on the subjects’ own Facebook postings, due to increased exposure to either positive or negative content from their own friends. The results show modest but significant ability to affect people’s emotional state by ever so slightly altering what they see on the Internet. The study concludes by pointing out that “the well-documented connection between emotions and physical well-being suggests the importance of these findings for public health”. And if this line of thought leadership is not creepy enough for you, there is one more little thing to note here. The subjects of this bold experiment had no idea that their friend feeds were being manipulated and that they were being studied by Facebook.

According to The Atlantic, who first broke the story, neither Facebook nor the authors were available for comments. However, the Princeton professor who prepared the study for publication, Prof. Susan Fiske, agreed to talk with The Atlantic reporter. It seems that she had some initial concerns which were addressed by the authors when “they said their local institutional review board had approved it—and apparently on the grounds that Facebook apparently manipulates people's News Feeds all the time... I understand why people have concerns. I think their beef is with Facebook, really, not the research”. Yes, the research itself is "inventive and useful", according to Prof. Fiske, and its “originality” should not be lost because “ethics are kind of social decisions. There's not an absolute answer. And so the level of outrage that appears to be happening suggests that maybe it shouldn't have been done...”  As it turns out, now that we know about the study, Prof. Fiske is “a little creeped out, too”.

The idea here seems to be that the definition of ethics at any given time depends on the personal opinion of those in the know. So if you conduct experiments on human subjects in secret, it is only your opinion that counts towards the definition of ethics. If the study becomes public, and if the public has a different opinion about ethics, you just say oops, maybe we shouldn’t have done that, but the results are way too cool, so let’s use them anyway. If indeed the study was approved by the review boards at either UCSF or Cornell, and contrary to explicit PNAS policy, there is no note to that effect in the article, it also appears that institutional review boards at academic centers will approve experiments on human subjects without consent or notification based on a solid track record of similar transgressions that went unnoticed and unchallenged in the past. Stated discomfort and feelings of creepiness emerge briefly only after public disclosure, and then we move on to the next adventure.

This little experiment is a perfect illustration of what Big Data can do for us. Big Data can spread mass happiness without “in-person interactions and nonverbal cues”, which can in turn induce “physical well-being” and ultimately improve the health of the public, at presumably much lower per capita costs. Here you have it; two of the Triple Aim goals are easily achievable by technology alone. All we need to figure out now is how to hit our third goal of better care for the individual, and this too is amenable to Big Data solutions once we get past the “creepiness” hurdle.

A recent article from Bloomberg describes precisely how highly individualized care is already provided to more fortunate patients through the beneficence of Big Data. Mammoth hospital systems turned health insurers, or just apprehensive about having to accept risk for their patients’ outcomes, are purchasing information from Big Data brokers, including credit card purchases, household and demographic information, and who knows what else. When combined with clinical and claims data these entities already have, Big Data allows health corporations to profile their customers and identify not only the ones that may put them at increased financial risk in the future, but, according to The New York Times, also the customers most likely to bring in increased revenues. And just like any other big business, health systems can then devise marketing and outreach strategies to mitigate their risk and increase their profits. Or in terms better suited for public consumption, they can provide better patient-centered care to individuals to help them get healthy and stay healthy. Problem solved.

Big Data is by definition a weapon of mass destruction. Some have likened Big Data to nuclear power, which can be used for unspeakable horrors or for the public good. This is an apt analogy, if we remember that nuclear power was first used for mass destruction, then it was (and still is) used for terrorizing nations, and when it is used to generate electricity, mountains of safety measures must be employed, and even then accidents do occur with dire consequences. Following the public discovery of unprecedented government surveillance on citizens’ communications (yes, that is Big Data), President Obama asked us to remember that "the folks at NSA and other intelligence agencies are our neighbors and our friends", and that they “are not dismissive of civil liberties”. Of course not, and the folks working in nuclear weapons plants, or nuclear reactors are also our friends and neighbors, and they are not mass murderers either. And yet, we found it necessary to enforce strict regulations on their work, instead of trusting their better angels and personal ethics.

The Facebook trial balloon floated nonchalantly by the National Academy of Sciences to gauge public reaction to mass psychological experimentation on people is most likely indicative of a much larger iceberg in the making. Creepiness is not a legal term and right now we are allowing every garage entrepreneur, every corporate entity and every governmental department to collect, distribute, sell, purchase and utilize unlimited amounts of Big Data for any purpose they see fit, including mass deception of the public, with no legal guidance and no legal consequences. We would never dream of a similar arrangement for nuclear materials. The polite reactions from self-appointed “privacy advocates” urging “transparency” and “patient ownership” of their data are woefully inadequate, because they demonstrate an utter lack of understanding of what Big Data is, how Big Data works, and how Big Data is being used. Besides, this is not about “privacy” anymore. This is about freedom, liberty and the non-enumerated right to human dignity.

We are Number Last

The Commonwealth Fund just published its fourth Mirror, Mirror on the Wall study comparing the U.S. health care system with other countries, and as in all previous studies, we ranked as the absolutely worst health care system in the developed world, bar none. Yikes. The Commonwealth Fund studied many health care domains, and we didn’t rank in first place for anything. The best we managed to do is place a lackluster third in the subcategory of Effective Care. The United Kingdom, on the other hand, with its socialized medicine system, took first place in almost every category, and the Swiss came in second.  That’s almost enough to drive a proud American into deep despair, and as the report bluntly states, “The claim that the United States has “the best health care system in the world” is clearly not true”. To add insult to injury, ours is also clearly the most expensive system in the world, and no, that doesn’t count as being #1 for something.

The authors of the Commonwealth Fund report are gracefully doing their best to cheer us up and give us hope, by pointing out that “[s]ince the data in this study were collected, the U.S. has made significant strides adopting health information technology and undertaking payment and delivery system reforms spurred by the Affordable Care Act”. It may be okay to hope that the next Mirror, Mirror report will show us moving up a couple of notches, instead of continuing to be the laughing stock of all developed nations. So how do we go about improving our scores? Adopting health IT is obviously the first thing, and then we need to “encourage more affordable access and more efficient organization and delivery of health care, and allow investment in preventive and population health measures”. Sounds like a plan.

Except, one thing in that picture looks very peculiar. The United Kingdom, the poster child of frugal and immaculate perfection, scored almost as bad as we did in the only domain that can be regarded as an outcome: health. The bon vivant French people, with the worst access to care and horrific patient-centeredness, seem to enjoy the healthiest lives of all (and Jefferson is finally vindicated). Looking further, it seems that Sweden, where care is of abysmal quality, but most equitable and efficient, came in second in healthy lives and third overall. Can something even be simultaneously of low quality and very efficient? Can a country have dangerous, ineffective care, like Norway, and still be ranked comfortably in the middle of the pack? For inquiring minds of the confused variety, the study provides more granular data points to peruse, so let’s dive in.

Over at the Incidental Economist blog, Dr. Aaron Carroll is warning us to stay away from “Zombie arguments defending the US healthcare system”. Fair enough. Let’s not worry about the U.S. system, or any system, and let’s even hold back on questioning the much too flawless results of this or that system. Let’s just look at the data. There are four major domains in the study: quality, access, efficiency, equity and healthy lives. Without splitting hairs, healthy lives can be considered an outcome of efforts in all other domains, but of course, it shouldn’t be, and the study authors acknowledge that the health care system is “just one of many factors, including social and economic well-being, that influence the health of a nation”. Completely agree. In which case, it is unclear to me why healthy lives measures are factored into the rankings of health care systems, straight up with no weighting or adjustments.

Let’s dig in a little deeper.  The quality domain is divided into four subdomains: effective care, safe care, coordinated care and patient-centeredness. Without debating this particular definition of quality, let’s look at how effectiveness is measured on two axes, preventive care and chronic care, each one assessed based on a series of data points. So for example, the first three prevention measures are: 1) the ease of printing out lists of patients due for preventive care; 2) patients who received preventive care reminders; and 3) patients routinely sent computerized reminders for preventive and routine care. I would call this triple dipping, because the only measure that actually counts here is whether patients received reminders or not, and how they responded, which was not measured at all. Whether it is easy to “print out” lists, or whether people are bombarded with computer calls that nobody picks up the phone for, is irrelevant.

The U.S. was ranked 3rd for patients receiving reminders and 7th for the other two useless measures. The UK ranked 1st for the useless measures and 5th for the mildly pertinent measure. For the remaining preventive measures, dealing with lifestyle advice provided by physicians to their patients, the U.S. ranked 1st and 2nd overall. To assess effectiveness, I would have expected perhaps a ratio of reminders sent, to reminders acted upon by patients, or at least reminders received, instead of an average score for those two, plus some strange measure about printing lists to paper.

The chronic care portion of the effectiveness subdomain illustrates yet another logical flaw in the study. Similar to the preventive care measures, here too the U.S. scores decently on actual chronic care activities, and poorly on ease of producing lists. But the bigger issue is the one measure evaluating cost barriers to adherence, and as expected the U.S. scored poorly on affordability, which is what this measure is all about. It may be fine to blast the U.S. system for being expensive, but to say that we are paying too much for a bad system, while assessing badness based on the system being expensive, is circular logic that should have no place in serious scientific conversation. 

Another, rather perplexing methodology flaw, is the many repetitive questions with conflicting answers that were nevertheless dutifully added as is to the averages. Questions of this type are routinely included in surveys to validate answers, but are not meant to be independent data points. For example, how is it possible to have a bad score on primary care docs receiving discharge summaries in general, coupled with a good score on receiving discharge summaries in a timely manner? You can keep on digging if you are so inclined, but my general impression is that the data in the analyzed surveys are neither sufficient, nor pertinent enough to allow for meaningful rankings of national health care systems. Let’s also note that all data is derived from surveys. Even if surveys would be classified as objective observation, which they are not, how can we infer causality from a narrow observational study?

And here is my biggest problem with these rankings and the subsequent conclusions drawn by the Commonwealth Fund, i.e. more computerization, more preventive care, more population management, or in other words more corporate and data driven health care. The study authors are basing their findings on a subset of indicators subjectively selected by the survey designers. What about the heaps and troves of other indicators that may also be pertinent to these findings? For instance, the average primary care panel size in the UK is a little over half the average panel in the U.S., and most primary care is delivered in small private practice, by primary care physicians who are better paid than UK specialists. Are those things pertinent to the UK stellar performance on all study domains? I don’t know, and neither does anybody else until a proper study is conducted.

Looking under the lamppost for lost keys is not a scientific method of inquiry, and when we can’t find said keys, it is not proper to blame the low wattage of the lamp. There is nothing in those surveys supporting the conclusions and recommendations put forward by this report, other than faith and preconceived opinions which were neither validated nor disproved by survey responders. There is no indication that the U.S. is an outlier in health information technology, preventive care or population management, and there is zero indication that these factors are the most salient factors in the performance of a health care system.

Does the fact the U.S. is the only country in this cohort where poor people are segregated away into special insurance plans that pay doctors and hospitals below cost, have anything to do with our poor numbers for Equity and Access? Does the for-profit nature of our system affect the exorbitance of our costs and hence all study domains? Are these things perhaps a tad more important than the ease of generating and printing out lists of patients? We may never know….

It is proper to observe, as the Commonwealth study does, that all other countries have universal health care, while the U.S. does not. It may even be logical to assume that such a huge systemic difference must in some ways adversely affect our outcomes. But it is nothing short of perplexing to conclude that the remedy consists of mixing a tiny bit of our overpriced (and yes, best in the world) medicine, with lots of corporate run analytic dashboards, followed by universal administration of this homeopathic concoction to innocent people.

Health Care for the Poor

There are over 16,000,000 American children (21.8%) who live in official poverty and double that number who are just poor. This is not happening in an obscure country, in a continent far away. It is happening right here, across the street from you. For those enjoying a good episode of Duck Dynasty, these are not children of illegal immigrants, and the vast majority is white kids. Over 44,000,000 American children (more than 1 in 3) were served by Medicaid and the Children’s Health Insurance Program (CHIP) in 2012. You can look at these numbers and be proud that we are helping more kids get proper health care, and you can listen carefully and hear the underlying narrative of an America raising its future self in abject poverty. Redirecting your gaze to our health care reforms, you should now understand that American health care is being transformed precisely to service this impoverished future. We are now building a health care system for the poor, the jobless, the uneducated, the huddled masses, rising from within.

It would have been much easier to reform health care in America if we had the patience to wait a couple more decades until 80% of our children end up living in poverty, but in its infinite wisdom, our progressive government has decided that it is better to be prepared for this inevitable future of ours, and the sooner the better. Unfortunately, the remnants of what was once America the beautiful, are having a hard time understanding the dire need to reform health care for a posterity that looks eerily like Charlie & The Chocolate Factory. Fortunately though, we do live in the disinformation age, hence reeducating the public to see the preemptive benefits of the new ways, is just a matter of devising a solid marketing campaign.

Less is More

Simplicity, as any marketer can tell you, is the key to effectively inducing mass acceptance of new ideas.  Less is more. In this case less verbiage is more effective, but we don’t really need to get into subtleties. Plain less is just more of whatever you want more of. Let your imagination complete the message. Less is more, and less is always more, and more is actually less, and why would you settle for less, when you should rightfully have more by having less. Is there anyone out there that doesn’t know for sure by now that in health care less is more? Less superfluous tests, less useless screenings, less harmful drugs, less dangerous treatments, and all the misfortunes resulting from more of the same, in article after article, book after book, interview after interview, spread far and wide, less is more.
  
Note how everything is prepended with an onerous adjective to soften the ground and minimize resistance to the idea that less is not just more, but less is good. The next step is to point to research showing that more bad things are bad for you, and then extrapolate to stating that more of everything is bad for you, while all the time using undesirable adjectives before every noun. Less paternalistic doctors, less irresponsible ER visits, less murderous hospital stays, less confusing choices, less is always more. Always, because poor people need to internalize and accept that less is all they can ever hope for, and less is better than nothing at all.

Too Many Choices

Having no choices at all is usually associated with totalitarian regimes, but even in a free country beggars cannot expect to be choosers, or as insurance executives tell us, we are more "sensitive" to prices than we are to choices when we shop for health insurance. It seems we relish the idea of having less choices (less is more, remember?). Therefore, we have narrow networks, which are being rebranded to high-performing networks as we speak, to improve moral. The talking points say that narrow networks are cheaper because in return for lots of customers, doctors and hospitals, hungry for more patients, are giving the insurer greater discounts. So let’s see: it would be cheaper to only have NYU Langone and maybe Sloan-Kettering and their doctors in your narrow network, than having dozens more area hospitals and thousands of other doctors, right? Well, not quite, because poor people do better with surroundings more concordant with their station in life and we should be more thoughtful in the choices we make for them.

We are very fortunate to already have a health care program designed from the ground up for the poor, so there is no need to start from scratch. As millions and millions of American Homo sapiens are descending from trees and gaining health insurance for the first time in their life, two distinct choices are emerging from innovative public/private partnerships. Those who have reached stable poverty are rewarded with free access to tailored networks custom built for their needs, and those who are still struggling to get there, are gradually eased into similar networks, while all obstacles to achieving perfect poverty are slowly removed from their wallets. The hope is that all our citizens will one day benefit from Medicaid, at which point we can truly begin to mold our nation for the future.

Who’s Your Daddy?

Poor people all over the world are acutely aware of being powerless to change their circumstances. Previously free and proud Americans are not likely to march willingly into the confines of poverty, unless of course, we can convince them that health care for the poor is actually an exercise in empowerment for the people. That’s a tall order for the best marketers, but we are executing on it flawlessly and brilliantly, because we had the wisdom to learn from past mistakes. Back in the nineties, America and its doctors rebelled against the yoke of managed care, and the HMOs pretty much failed. Today, we start fresh by breaking the unholy alliance between patients and their doctors, instead of expecting this to be an outcome of reform.

First we tell people that doctors are bossing them around too much, and that they keep secret documents about their patients. Empowered patients have a right to not let doctors advise them, and to see those classified files where all sorts of horrible things are written about each patient. Then to support our case, we establish through well researched anecdotal innuendos that doctors are greedy, incompetent, careless, and cannot be trusted. Next we make fun of people who “like” their doctors and want to “keep” them (like pets or old tee shirts), and we make sure that having the same doctor for lengthy periods of time is impossible going forward. Finally, we establish the insurer or the government to be your lord and protector in the perilous journey through the doctor infested waters of a “fragmented” health system. So let’s try that again, and this time we want the right answer: who’s your daddy now?

The New Normal

The transition from being a free and wealthy nation to being just another medium size impoverished country, studded with magnificent sultans, may trigger a bit of anxiety, some anger and certainly lots of sadness in America. It is also well documented that mental disease is rampant among the poor, so we need to prepare. The old premise of an individual right to pursue happiness is now being upgraded to a personal responsibility to be happy. Screening for depression is becoming mandatory for all adults and children over thirteen years of age, and depression is assessed based on answers to nine questions, sometimes over the phone. Back in 2005, studies estimated that almost half of Americans experience some sort of mental disorder during their lifetime. With the recent expansion to the definition of mental disorders, it is clear that by now the vast majority of Americans are pathologically disturbed.

But then again, if we are all hopelessly sad, overly angry and addicted to caffeine and such, aren’t we the ones that are “normal”? And perhaps the minority living in gated communities, unaffected by the looming better tomorrow, should be labeled with some sort of new disorder. We’ll leave that to the DSM VI (and the courts), and for an immediate solution to the poverty induced new normal, I would like to suggest a little innovation derived from dental medicine. Instead of wasting time and money on integrating behavioral health into routine primary care, why don’t we just cut through the chase and throw some Lexapro into the water supply? The new abnormal minority is not very likely to drink from a faucet anyway, so they should be safe.

High Tech

Our success at keeping everybody informed, empowered and controlled, hinges on getting high on technology. This was the one missing piece in past attempts to create proper value chains, and just plain chains, for our citizens. Now that we succeeded in gluing most humans to a miniature computer permanently connected to our grid (sticking with calling it a phone was a brilliant marketing achievement), the rest is history in the making. If health care were a product, we could ship its manufacturing to where we ship all manufacturing, and make enough plastic versions of the original to satisfy our poor. But health care is a service, and here is where high tech comes to the rescue. By making enough hardware and enough software, and by strategically repositioning venues, you can productize services into manufactured goods. That’s how we replaced mom’s laborious cooking with packaged foods, for most poor people. And that’s how we will replace health care with health maintenance for the same. It will take time, thoughtful planning, lots of innovation and a carefully cultivated disdain for human life, but I have no doubt that our leaders will guide us safely to the bottom.

It is Time to Stifle Some Innovation

Stifling innovation is a very bad thing. As a society it is incumbent upon us to let innovation breath free, prosper and multiply, because innovation is good for us. All innovation is good for us, even if it doesn’t look that way initially, because you never know when a seemingly useless innovation will spawn that one innovation that will save the world. Hence, we should not try to look innovation in the mouth and we should not attempt to discriminate between innovations that seem worthy and those that look and sound like snake oil of days gone by, or much worse. We should just lay back and let ourselves be immersed in the fragrant, colorful and relaxing innovation bubble bath.

Health care innovation comes in three basic flavors, scientific discovery, technology utilization and operational model. What distinguishes enlightened societies from those left behind is the ability to harmonize all three domains of innovation to benefit individuals and as a result society as a whole. Health care in America is in trouble because this paradigm is broken now. Jonas Salk with his scientific discovery financed by the dimes of regular people and placed back into the public domain, could not happen today for two reasons. First, no activities can be undertaken in our time without the potential for massive profit to somebody. Second, few if any individuals are in a position to have and exercise the courage of their convictions, unless of course they happen to be billionaires. The upheaval engulfing health care today is not driven by a desire to alleviate the suffering of small children. Our health care is being transformed in a bipolar process whose diametrically opposed goals are to reduce the costs of care while maximizing the profits extracted from caring for sick people. This is an accounting exercise where the services and passions (and, yes, ambitions) of great scientists and great humanitarians are not welcome anymore.

Technology Innovation

Accounting of dollars and cents, which is what our lives are being boiled down to, is by definition based on what we used to call data, or numbers, and what we now call Big Data, or surveillance. The primary innovation of our times is the stunning realization that for the first time in history, we will be able to collect literally everything – every word, every step, every thought, every breath and every heartbeat, of every person on planet Earth – and we can do it all from afar, without spooking the observed. When the technology juggernaut was unleashed in the health care sector, it came with an audacious philosophy stating that, once we are able to collect every bit of information about every single person at every moment in time and “mash” it all together, the world will be a better place. What was once basically a criminal endeavor, perpetrated by individuals in bits and pieces under the cover of darkness, has been elevated to the #1 aspirational goal of humanity, when administered in bulk by the State and its corporate partners. Bestowing renewed legitimacy on the age old debate about tradeoffs between individual rights to privacy and self-determination, versus tangible material benefits, such as safety, sustenance and medical attention, is the most significant contribution American health care is making to a changing world order.

In a recent JAMA opinion piece, physicians from Harvard University are attempting to drive home this innovative idea. First we are reminded of the spectacular benefits to humanity made possible when we go “beyond aggregate data and link information to individual people” as evidenced by the achievements of the NSA, Google and the Obama 2012 cybercampaign. Then in a beautiful graphic, the authors are illustrating how we would combine clinical data diligently collected by doctors, with Facebook, Google, Twitter, tracking devices, police records, grocery store purchases, employment records, genetic information and whatever else we can get our hands on (I would throw in the NSA data too), to “assemble a holistic view of a patient”.  To overcome the trifle technical and social barriers to progress, Drs. Weber, Mandl and Kohane are advising that it is time “to convene a public forum whereby the relevant stakeholders, including citizens, the health care community, and commercial data vendors could meet to frame the policy from which legislation and ultimately technical protections for big biomedical data linkage will devolve” [emphasis added]. This in and of itself is a rather innovative idea, seeing how in one fell swoop it dispenses with all the arcane complexities of the democratic process, while elegantly redefining the will of the people to be just another special interest on the same footing with data vendors.

Systems Innovation

In response to the emergence of new technology philosophies, the operational model of health care is now shifting to better position itself to take advantage of these innovations. A stethoscope wielding doctor is as poorly prepared to leverage the potential benefits of big datasets to humanity, as any individual patient focused on his or her own small and, let’s face it, inconsequential existence. The leadership role will fall to others. Three years ago, the President’s Council of Advisors on Science and Technology (PCAST) issued a landmark report advising the government on how to best facilitate the generation of Big Data in health care. Last week, the PCAST issued another report, supported by evidence from manufacturing and commercial aviation, recommending the application of Systems Engineering principles to health care to help big organizations and “communities” (i.e. bunches of poor people living in close proximity to each other) leverage their Big Data. Considering that American manufacturing is dead, and that flying coach on commercial airlines makes you wish you were dead too, one could be tempted to question this second round of massive taxpayer expenditures recommended by the PCAST. In all fairness though, the PCAST does place strong boundaries on government intervention which “should in no way, however, be a substitute for what the market can and should develop, i.e., for-profit organizations that provide training and skills to health-care systems”.

You should take a few minutes and read the PCAST report because too many of us are ignoring policy making processes, notices in the Federal Register, and public forums in name only, and even elections, leaving the same handful of very powerful people and their handpicked lackeys to misrepresent the wishes and interests of an entire nation. I will just point to two interesting examples cited by the report where systems engineering principles were applied with great success to health care. One is the VA system, and I find it perplexing that no one at the PCAST saw fit to edit that example out of the final report, after the VA chief was forced to resign in disgrace precisely over a systems engineering fiasco. The other was a truly effective initiative at Virginia Mason, which failed because the hospital saw its revenues tanking when it changed the way it was providing care for back pain. Somehow, the PCAST seems to be of the opinion that cheaper care can be provided without reduction in revenues for those selling care, and the way to achieve this alchemy based innovation is, you guessed it, to switch from fee for service to paying for a yet to be defined concept, called value.

Absent Innovation

The science of medicine is incomplete, yet there are no aspirational goals and no inspirational challenges geared towards pure scientific discovery. There are many initiatives aimed at painstakingly preventing or controlling chronic disease caused by reckless abandon to industrialization and our inability to police the greed of those who are now purporting to solve the health care problems they created, by introducing the same disastrous processes into the last bastion of humanity – caring for our bodies and our minds. And to all the empowered patients (or e-patients) out there, climbing every public barricade, screaming for their “damn data”, and demonizing every old-fashioned physician, while serving as grease for the wheels of our health care revolution, here are the results of your success.

According to Dr. Joseph Kvedar, the founder and director of Partners HealthCare’s Center for Connected Health, this is the future of medicine: “So I fully expect in 10 years your healthcare experience to be very personalized based on you allowing us to capture a lot of data from your device ….. the idea that we can capture your mood based on the number of texts you send and outgoing communications …..We’ll know your GPS tracking, all your mobile purchasing data and we can kind of figure out if you’re eating healthy. We’ll know if you’re drinking too much caffeine or too much alcohol. We’ll know a lot of things about you that we can start to serve up really compelling content to you that should be engaging enough — games, rewards, incentives, what have you in the background — that you will want to stay healthy”. As Forrest Gump would have said, that’s good, one less thing to worry about.

In other words, the “paternalistic” doctor, with his anachronistic stethoscope, strange concerns for privacy and ethics, and a ridiculous urge to lay hands on your body and look into your eyes, is being replaced by the unilateral decrees of a royal “we” of an invisible, machine augmented, superior intellect, presumably systems engineered to perfection, delivered by “smart” phone to a nation of feeble minded people who will be kept healthy by playing Veggie Crush all day.
Either we stifle this innovation now, or it will forever stifle every man, woman and child in this entire country, and perhaps the entire world.

As Health Care Learns and Grows…

While grappling with the costs and imperfections of our health care system in recent years, a multitude of experts in the field found it useful and enlightening to compare health care to a variety of more familiar industries, and to suggest that health care should adopt operational models that have been shown to work well in those other industries. From the financial industry, we learned that health care must be computerized. From the restaurant industry, we learned that health care must be standardized. Observing Starbucks, we concluded that clinicians must be taught a few things about customer service. Aviation brought us safety manuals for medical procedures, and NASCAR informed us about the superior power of disciplined teams of workers. The history of agriculture provided important lessons on government’s role in creating bigger and more efficient producers, and from the history of manufacturing we learned everything else we needed to know, from Six Sigma to Lean Toyota to focused factories, and how innovation must begin with cheap products and services that are good enough for all but the wealthy and the narrow minded.

As many of the lessons learned from these industries are being applied to health care, the results are starting to come in and most are shockingly disappointing. A group of researchers from Stanford University is reporting in the May issue of Health Affairs that “an increase in the market share of hospitals with the tightest vertically integrated relationship with physicians—ownership of physician practices—was associated with higher hospital prices and spending”.  A Harvard University paper in the same issue of Health Affairs is predicting that “ACA reforms could result in an additional 4.4-percentage-point increase in profit margins for hospital-based EDs compared to what could be the case without the reforms”. A very large study in Canada recently published in NEJM, found that “[i]mplementation of surgical safety checklists in Ontario, Canada, was not associated with significant reductions in operative mortality or complications”.  And yet both vertical integration and ACA reforms are continuing at a brisk pace.

Back in 2012, a large national study from UC Davis, published in JAMA Internal Medicine, found that “higher patient satisfaction was associated with less emergency department use but with greater inpatient use, higher overall health care and prescription drug expenditures, and increased mortality”. A more recent JAMA Surgery study from Johns Hopkins “suggests that patient satisfaction is not related to standard process-of-care measures that have long been used as markers of surgical quality”.  Also in JAMA Internal Medicine, researchers from the University of Chicago reported that in their study “71.1% of patients preferred to leave medical decision making to their physician” and the remaining 28.9 % of patients who preferred to make their own decisions “had increased LOS of 0.26 day and increased costs of $865”. Patient experience surveys are quickly becoming mandatory and the “patient decision aids” industry is booming.

Yes, the findings in almost every article cited above have been disputed, and a few generated notable literary altercations, none more acrimonious though, than the technology wars. Two years ago a study funded by the Agency for Healthcare Research and Quality (AHRQ) found that physicians in hospitals spent approximately an hour and a half each day interacting with EHRs, and that 16% of their notes along with 38% of nursing notes were never read by anybody. A year later, the American Journal of Emergency Medicine published a study showing that great strides have been made, and in the ED, 43% of physician time was spent interacting with EHRs and 28% was spent interacting with flesh and blood patients. A fascinating new paper from researchers at Northwestern University studied the gazing patterns of doctors during office visits and found that “physicians with EHRs in their exam rooms spend one-third of their time looking at computer screens, compared with physicians who use paper charts who only spent about 9% of their time looking at them”. The market for analyzing all the data collected in lieu of patient care is “poised to skyrocket” from the current $4.4 billion to well over $21 billion by 2020.

In a hot off the presses opinion piece in JAMA Internal Medicine, paid for by a charitable organization controlled by Sutter Health, the venerable Dr. Thomas Bodenheimer is advocating more substantive delegation of clinical tasks to medical assistants who, as a group, are “ethnically and linguistically diverse, and culturally concordant with a variety of patient populations” (I absolutely adore the English language), in order to meet increased demand for primary care and allow clinicians to “see more patients per day”. Predictably, Dr. Bodenheimer concludes that the “enhanced roles for medical assistants is an innovative approach”. Another innovation that is so new and exciting that University of Chicago researchers decided to write a Health Affairs paper about it even before study results were available, consists of primary care doctors who will be admitting and caring for their own patients when hospitalized. The grand innovation here seems to be that patients must first become very sick, presumably for lack of proper medical care, and then and only then, do they get a Comprehensive Care Physician to follow them through the numerous hospitalizations awaiting them. It is comforting to read that this oddly retrograde approach is not posing any theological difficulties with the Holy Scripture of health care reform – The Innovator’s Prescription – which is the embodiment of all we need to learn from retail, manufacturing, technology, etc.

There is no need to shake your head in utter disbelief, because there are very simple explanations to this cacophony of Casino style fun and games, where we all serve as chips and tokens. Yes, money is one explanation, but not the only one. It seems that in a headlong rush to fix things, many people with basically good intentions overlooked a few salient linguistic details.
First, the Marx-Schumpeter paradigm for capital accumulation is called “creative destruction”, not destructive creation, which means that before you take the wrecking ball to what is already there, you must have the new and tremendously improved stuff, working and spreading like wildfire. 
Second, “disruption” is a retrospectively affixed label to a novel business idea that worked surprisingly well, not a prospectively self-ascribed title used for everything people do after they have coffee in the morning. 
Third, business models conceived with an intention to defraud the public are commonly referred to as embezzlement, corruption, larceny or felony in general, and only rarely are they hailed as “innovations”. 
With so many divergent opinions on what ails health care and how to best provide a cure, can we maybe start by agreeing on the terminology we use to disagree with each other?

Translucency with Turbid Clouds

Did you ever read a seemingly inconsequential sentence somewhere and it then just refused to leave your mind for days on end, triggering avalanches of thoughts way beyond the original intent, if there even was one? It just happened to me a few days ago when I read one more industry article about the recent Medicare data dump. The following remark was attributed to a primary care doctor: “The U.S. is entering an era of more accountability and transparency in all aspects of people's personal and professional lives and “medicine cannot be excluded,” he said”.  Back in 1996 a science fiction author by the name of David Brin, published an article in Wired Magazine, where he too prophetically argued that the era of transparency is no longer preventable. Ignoring an entire branch of physics, Mr. Brin suggested that the only antidote to the floodlights shining on each individual consists of a “flashlight” we can use to point at the elites running the lightshows. But Mr. Brin forgot another time honored use of flashlights: we can start pointing them at each other, no doubt to the great amusement of floodlight operators. This has the twofold benefit of keeping us from staring at the floodlights overhead, and of illuminating any subatomic particles that may have eluded the big lights. And there is no better, or more entertaining, place to begin playing with flashlights than medicine.

I won’t belabor personal transparency, since it is tantamount to invasion of privacy, which should be illegal, but it is not. Invasion of privacy in the U.S. is becoming a business model and a method of governance. If you missed the 60 Minutes segment on data brokers on April 9th, here is a link. In the now customary incestuous relationship between big business and government, the Institute of Medicine (IOM) is proposing to help data brokers clean up the dossiers they are compiling on people. Utilizing the Meaningful Use program lever, the IOM will be delegating this task to physicians, so a doctor visit will include detailed interrogation regarding such things as the ethnic/racial composition of the neighborhood you live in (geocodable, of course), sexual practices, exposure to fire arms, employment, country of origin, previous incarceration, and all sorts of important stuff for the Internet business. It will also help employers do a much better job with hiring good people since your doctor will have to note now if you are a conscientious, optimistic fellow, or alternatively a stressed out hostile, angry and dissatisfied individual. The IOM would have liked to add more of these hard to get data points, but they couldn’t find the faintest indication that those things have anything to do with medicine at this time. I’m sure they eventually will.

Professional transparency on the other hand, is a much more complicated issue. If you offer to sell a service or a product, you should expect some scrutiny of the value you provide for the buyer, unless of course, you have the means by which to force people to purchase your service or product. Legal systems have always endeavored to create moral frameworks for protecting buyers from unsavory sellers, and vice versa. The best buyer protection is full disclosure, or transparency, regarding the service or product being sold, coupled with legal accountability for negligent and intentionally fraudulent practices. With this in mind, shouldn’t it be the government’s responsibility, indeed its duty, to provide the public with as much information as possible regarding services provided by physicians? Particularly since medical services are most often not elective, and one could argue that the medical profession, as a whole, has the ability to force people into buying its services under duress. Let’s assume for a moment that the answer to this question is affirmative, and move on to a couple of more specific questions.

First, what is it that people buy from doctors? Roughly two types of things: expert advice or skilled repairs. When you are considering the purchase of these services, it would be very helpful to have an independent assessment of the level of expertise and proficiency at repairing items similar to yours. And of course, you would want to know how much the service is going to cost. In the pre-transparency era, we did our best to infer the level of physician expertise or skills by asking very simple questions: Where did he go to school? How long has she been in practice? What do my friends think about this doctor? Is he “affiliated” with the shiniest academic center in town? Are his other patients smart, educated people, or maybe even doctors themselves? We didn’t ask about cost, but more often we did ask if the doctor accepts our insurance, because doctor fees were a sunk cost for most people with health insurance.

You don’t have to have a Masters in Health Administration to see that even if we managed to obtain answers to all our questions, the dataset would be incomplete and fraught with inconclusive and even misleading subjective information. The Internet made it easier to both ask and get answers to some of our questions, but hasn’t done a thing to improve the quality of information available to us, and maybe the opposite is true, seeing how we are all perfectly willing to take advice from anonymous strangers who have nothing better to do other than to rate things online (when is the last time you rated something on a vendor site?). If the government is to step in and help us pick doctors, it would have to do much better than facilitate availability of social media gossip about this or that physician.

For example, what type of information could assist young parents with picking a pediatrician? Let’s be honest and admit that in addition to simple facts, such as education, years in practice, location, hospital affiliation, you would want to know what other parents think about this doctor, and what other doctors think about her as well. But in order to provide context to these opinions, you would need some objective measures. Do I get the doctor on the phone if I call with a concern, or do I get someone else? Will she always see my kid, or will we have to deal with a bunch of random people? Does she offer well-child appointments that fit my work schedule?  How difficult it is to get an appointment? If my child needs hospitalization, will she be there, or will I be on my own? How good are the physicians that cover for her? How good are the specialists she usually refers to? How often does she refer and for what reasons? How much time will she spend with my child?

And here are the things we wouldn’t need to know, not because these things are not important, but because they are largely implied and too granular to be indicative of substance. How many kids is she testing for pharyngitis and is she properly treating them? How many kids get weighted and have their height measured? How many are asked about smoking or whether they are depressed? How many girls are screened for Chlamydia and how many kids in her practice got all their shots?  And yet, the government is in full swing to deliver exactly this nitty-gritty information, and absolutely none of the answers most people seek, not because the answers we want are not available, or impossible to generate, but because keeping everybody busy looking at the trees may just be enough to detract our attention from the massive forest being erected in our health care backyard. 

You can easily extrapolate this example to adult primary care and specialty care of all types, including tertiary care. How about prices though? Since health insurance has evolved into indemnity insurance for errors in lifestyle, doctor fees are no longer a sunk cost for the majority of Americans.  Most everybody now, has to pay full price or at the very least a percentage of physicians’ fees in addition to insurance premiums. Our young parents may want to factor the cost of seeing a pediatrician into their decision making process for a variety of good reasons, not just because they are looking to care for their baby on the cheap. And here is where the most absurd facet of our health care system makes its appearance. The prices for seeing a doctor are meticulously defined and used by insurers, but doctors are prohibited from divulging them, and the government is doing absolutely nothing to change that.

What the parents in our example need is a simple table with rows listing all the pediatricians they are considering, and columns across, listing what each insurance plan in their area has decided that parents will have to pay each doctor, at least for the most common services (including facility fees, if any). Using this and similar tables for their own health care needs, our little family could make an informed decision not only about which doctors to see, but also which insurance plan they should enroll in. Unfortunately for them, and for their doctors, and for us all, such tables are detrimental to the moneyed interests of big health care businesses, and therefore will not be forthcoming anytime soon. Instead, the government is throwing out bunches of dollar numbers that have nothing to do with anything, implying that there is great wisdom to be found in partial truths, and that we should get busy trying to find the secret keys to said wisdom. 

Armed with irrelevant quality measures about their doctors and deliberately misrepresented price information, patients recently turned consumers are expected to take on the medical industrial complex, very much like mice are expected to attack the cat amusing itself before dinner. Transparency, we are told is a very powerful tool for an enlightened citizenry, and it is. Translucency by design, and turbidity by negligence, which is what we are being served here, are very powerful tools too. Different objectives though….

Our Cheap and Productive Lives

So you think there is a war on doctors, don’t you? It certainly looks that way from your particular vantage point. The government is deftly intruding into your professional life with a computerized fifth column that is extracting information on your every move, and to add insult to injury, it forces you to actually collect the data which is to be used against you in the court of public opinion. Media outlets are stepping all over each other to be first in line with sensational headlines implying reckless abandonment to greed in a profession believed to hold higher ethical standards than most. And the ever louder calls to rein in the seemingly rampant waste, fraud and abuse in health care, are becoming synonymous to reining in doctors’ irresponsible conduct.  The art of rabble rousing has always included oblique references to how the mighty have fallen. What is unique about the modern day twilight of the doctors is that it has practically nothing to do with the doctors themselves.

There really is no war on doctors. There is a war on patients, and doctors are merely collateral damage. You are an exploitable asset, to be bought and sold like cattle, and with you, the “covered lives” that you “control”. In a perfect world the price of acquisition would include orderly transfer of said control to the new owner, but the world is not yet perfect, so for the time being you must be retained as a proxy for the controlling interests in covered lives. You will have to learn new skills because the management of many covered lives is different than the management of the few, or the one. You will be held accountable for the health of your populations, and you will need to exhibit financial stewardship of the scarce resources allotted by the owners. In other words, your job now is to increase the productivity of the covered lives assigned to you, at the lowest possible cost to your employer, and the clients of your employer. These are classic key performance indicators (KPIs) in any business, and health care is no different.

The established leadership of the medical profession is currently on an all-out crusade to prepare the rank and file for their evolving position in this new world order. In April, NEJM published the recording of a roundtable discussion, moderated by Dr. Atul Gawande, which concluded with the heralding of a “new culture in practicing medicine” where doctors “prioritize our responsibilities as shepherds of scarce social resources to the same extent that we’ve historically prioritized our responsibilities for providing benefit to our specific patients”. To reinforce the argument, Dr. Peter Ubel, in an opinion piece titled “Promoting Population Health through Financial Stewardship”, is proposing to take the ABIM Choosing Wisely campaign to new levels and have doctors “contemplate trading off small clinical benefits for individual patients in order to promote more general societal welfare”. Since institutions have a business imperative “to reduce the amount of care they provide to patients” because of new payment models, Dr. Ubel keenly observes that “[i]f physicians resist these efforts because they feel they owe it to their patients to provide the best care regardless of costs, hospitals may look for other ways to trim expenditures, such as by reducing nursing staff”. If you are a doctor, and especially if you are a patient, the enormity of this statement should give you monumental pause.

Why wouldn’t hospitals auction off original artwork hanging in the lobby instead of firing nurses, is largely beyond me, but this particular flavor of financial stewardship, which is benefiting society by limiting clinical benefits available to its members, is all the rage now. Did you ever wonder why insurance companies seemed to not mind Obamacare requirements to place no limits on lifetime or even yearly maximums? Wonder no more. Last month the American College of Cardiology and the American Heart Association published the “ACC/AHA Statement on Cost/Value Methodology in Clinical Practice Guidelines and Performance Measures”. It seems that clinical guidelines are going to sport new value ratings that can be used to inform insurers and policy makers engaged in coverage determinations. Based on the World Health Organization (WHO) methodology, spending over $150,000 per quality adjusted life year (QALY) will be designated as low value care. The American Society of Clinical Oncology is working on its own financial stewardship guidelines, coming soon to your iPhone. Obviously insurers could just restrict coverage based on these ratings, but oh how much better it would be if doctors just refrained from prescribing these treatments on the QT.

For their part, distinguished economists, who practice their dismal science in the health care domain, are also searching for tools to help doctors manage their assigned populations. Writing for the New York Times, Prof. Uwe Reinhardt is lambasting Congress for its reticence to assign formal monetary value to the lives of people. There is implicit bulk valuation when covered lives are transacted, of course, but what you need at the bedside is patient-centered, personalized value estimates for each patient profile. How else will you decide if there is acceptable ROI when contemplating small clinical benefits? There is a rather humorous exercise in demagoguery, mistakenly attributed to George Bernard Shaw, which states that our seemingly moral convictions are not based on principles, as much as they are based on the amounts paid to us for transgressions. Following this irrefutable logical argument, Prof. Reinhardt is suggesting that it’s time for Congress to stop feigning indignation, and that it should take a lesson from the venerable Milton Friedman and put a price on every human head.

Walmart is promising to bring organic food to the masses. Walmart will make organic food affordable for the poor. What a wonderful idea! For Walmart that is. Small organic farmers are going to be forced to accept cheap Walmart prices and increase their “productivity”, or agree to sell their farms to industrial farming corporations. Maybe former organic farmers can get a job at Walmart, stocking shelves with pseudo-organic foods. Before you know it what passes as organic foods will be as lousy as regular foods, only a bit more expensive. Walmart is the future of all commerce because Walmart doesn’t just sell cheap replicas to unsuspecting poor people. Walmart is also nurturing and growing the poverty necessary to attract new customers. And this travesty is precisely the model chosen as the blueprint for fixing health care in America.

Caveat Emptor

For the longest time now I was of the opinion that the entire patient engagement movement is much ado about nothing, either stating the obvious, or demanding the impossible. I changed my mind. The emerging realities of health care in the U.S. are rendering patient engagement imperative, except for those patients who are participating in programs like, say, Penn Passport, a Penn Medicine product advertised as “a great resource for people who value their health care”, which includes Pavilion services complete with “warm cherry cabinetry, soothing earth-toned fabrics, comfortable elegant furnishings and convenient in-room safe” (the safe did it for me). For all others, it will be up to each and single one of us to advocate for ourselves in an essentially adversarial system. Perhaps a new profession will emerge, and perhaps patients would be best advised to bring an attorney to the exam room.

Dear Mr. and Mrs. Average Patient, since you are unwilling or unable to properly value your health care, the system will do the valuation for you. To ensure that the services you receive at industry venues are clinically appropriate for your situation, you must engage in independent and sustained research of your condition. This is particularly important if you are poor, old, disabled, very sick, or illiterate. Most of your research can be done on the Internet. If you can’t afford a computer, the public library will provide one for you. If you don’t have a car, most buses will have a stop in proximity to a public library. It is imperative that you keep notes and actively question all therapies offered to you and most importantly, those that are not. You should insist on real-time, online access to your medical records. Not some generic summary, but the full notes outlining the thoughts (if any), differentials and considerations made by those in charge of shepherding your scarce resources.

You could try to find a tiny private practice that is “in-network” with your insurer and pray that they take new patients, or you could scrounge together a few dollars, and go find a cash-only physician that may be willing to advocate for you. But the best thing you can do is to take a more expansive approach to patient engagement, and stand up for yourself and your family in this abject, immoral and underhanded war on the American people. The only thing that stands between you and cheap pseudo-medicine that looks fine from a distance, and full of holes upon closer inspection, is your doctor. No, doctors are not saints, and a few are outright villains, but taking away the ability of your doctor to exercise independent judgment on your behalf, is not intended to benefit you, or society for that matter, unless by society, you mean the six Walmart heirs, and their peers. You may be tempted to think that physicians are wealthy enough and powerful enough to ward off attacks from without and from within on their own. You would be very wrong. And is this really a health risk you are willing to assume? It’s time to engage….