You hear a lot about democratizing medicine these days, particularly from Dr. Eric Topol and various purveyors of medically related things aiming to sell their wares directly to consumers. Democracy is something we cherish in this country, something we are (or rather used to be) willing to defend with our lives, so democratizing stuff must be a good thing, no? Must be, because we seem to be interested in democratizing all sorts of other things, such as innovation, education, technology, fashion, knowledge, art, and of course data. Maybe it means that everybody gets equal access to these things, or equal voice in how decisions are made, or something along those lines. Democratizing stuff must indeed be a good thing, or at the very least nothing to worry about.
It is probably safe to assume that advocates for democratizing medicine are not proposing that the people should have authority over the industrial medical complex, or at least I haven’t run into those types of opinion pieces. It also most likely doesn’t mean that all of us should be entitled to graduate from medical school. No, according to Dr. Topol, the supreme authority on this subject, democratizing medicine means that “each person, with the new tools that we have today, takes charge and ownership of their data and ownership of their health”. Okay, now you can start worrying.
There is an implied criticism when we tell someone that he or she should “take ownership” of something, and there is an explicit demand that they take more responsibility for whatever it is we ask them to take ownership of. The personal responsibility song and dance in health care is not very innovative, although it may prove to be plenty disruptive for millions of people. The difference between the classic Ayn Rand view of personal responsibility, as embodied in the regressive consumer-driven health insurance paradigm, and the democratization approach to medicine seems to lie in the “new tools that we have today”. If you stop and think about it for a moment, these two peas in a pod are actually complementary to each other.
It seems only fair that before passing judgement, we should explore those “new tools” for taking ownership of our health. A recent article in San Francisco Magazine, titled “Silicon Valley Will See You Now,” describes a few of these tools with very helpful commentary from such pioneers as Dr. Robert Wachter and Dr. Topol himself. The first health ownership enabling tool is the Scanadu Scout which allows people to measure blood pressure, temperature, heart rate, and pulse oximetry on their own. According to their website, “Scanadu is using mobile and sensor technology to develop a portfolio of FDA approved, consumer friendly products that put the experience of an emergency room in the palm of your hand”. With such tools you can make every day a special emergency room day, minus the doctor, of course.
Another health ownership tool comes from uBiome, which aims to “equip all individuals with the tools they need, in order to empower them to learn about the unique balance of bacteria in their bodies”. You send samples and they collect your data and aggregate it in their database so you can see how your microbes compare to heavy drinkers or vegans, and how the little critters living inside you change over time. Why? Why not? You can even engage in your very own scientific studies. Whereas Scanadu gives you the opportunity to become a “citizen doctor”, uBiome will empower you to engage in “citizen science”. No scientific aptitude Scooter? No worries, because “as a research subject” you can still be “an important player in the overall project of fixing healthcare”, or the uBiome bottom line, whichever comes first.
Closing the loop on health ownership is a startup named We Are Curious, which aims to aggregate copies of all the data of all people from all other tools (a massive asset), and in return will allow members to advise each other, based on data profile similarities. So if you are going through menopause and are experiencing hot flashes and have no money for a doctor, why not get some citizen advice from someone like you? This last example illustrates in all its glory the absolute imperative for us to take ownership of our data first. Otherwise how on earth would all these startups amass enough patient data for research and resale? Certainly the ossified hospitals and curmudgeon doctors are not going to willingly fill the databases/coffers of thousands of venture capital funded startups for no good reason. Citizen owners will.
Physicians, science and professional advice cost a lot of money. Citizen doctors are free, citizen science is free, and citizen advice is free, but only if you assume that citizen time and effort (i.e. labor) are also free. Considering how much many of us are getting paid for work nowadays, this may be a pretty valid (and time tested) assumption. In more modern parlance, medicine (or a facsimile thereof) is on the brink of joining the sharing economy, and if you think Uber and Airbnb are exemplars of the sharing economy, think again. According to one of Rupert Murdoch’s propaganda outlets, the true sharing economy is one where the masses own nothing of value and the destitute are “happy to share” the sweet chariots commin’ for to carry us home. Righteousness will come over Jordan to replace our sinful “era of hyperprosperity and reckless glut”.
Perhaps Mr. Murdoch’s hired keyboards don’t get out much, but the notion that we are somehow enjoying more than our fair share seems to be gaining traction in health care “thought leadership” circles as well. Biblical morality with a puritan flavor runs deep through modern health care narratives. In America we spend too much public money on chronic disease that is rooted in the deadly sins of gluttony and sloth. Our saviors want us to be “activated” and “engaged”, as opposed to apathetic and lazy about our health. Our “lifestyles” and “behavior” are in dire need of reformation. We should take ownership and responsibility. We should monitor, measure, be vigilant and work hard to keep ourselves healthy, instead of relying on other people’s money to bail us out when we get sick.
Whereas once upon a time we worked hard and played by the rules to achieve a little house with a white picket fence, two happy kids, a dog and a wood-paneled wagon, now we have to work hard at something else and play by the rules of someone else to merely stay alive. In the grand American ethos, it is immoral to question, let alone object to the mantra of working hard and playing by the rules. Perhaps this is why Dr. Topol feels empowered to state that “patients and their families can take a lot more charge and they want that if we let them have it”. It would be unthinkable, un-American really, to assume otherwise.
Democratizing medicine presents a “formidable improvement” for physicians too, because for doctors who are “saddled with a ridiculous amount of responsibilities,” the “best way out” is to shift those burdens to sick people and their families. In Dr. Topol’s medical democracy, doctors will still have “oversight” and provide people with “wisdom, guidance and counsel” and that “human to human” thingy that is “so essential”. Reasonable, although perhaps a bit disconcerting coming from a doctor, but let me be blunt for a moment. Physicians of all specialties, including the lowly paid ones, are the highest paid professionals in this country, and have been consistently so for quite some time, precisely because people recognize the awesome yet awful nature of physician responsibilities. Once you hand off those unique responsibilities, you will be handing off most of your paycheck as well. Guaranteed.
Democracy in a political sense is the rule of the majority. The majority of Americans are barely surviving paycheck to miserable paycheck, in many cases only with the help of subsidies or public welfare, and with few prospects of a better life for us or our children. Morality lectures for the undeserving are probably not very high on our wish list right now. As to physicians, the majority may very well be burned out by the proliferation of extraneous administrative work, but as far as I can tell, few if any are clamoring to shed the core responsibilities of their profession. Democracy in an egalitarian distributive sense is not a serious proposition when people are expected to do more work and bear more costs, but still be subject to “oversight”. If we are serious about égalité for citizen doctors, we should be able to order our own MRIs and write our own prescriptions. No, I didn’t think so either.
What then is the essence of this so called democratization of medicine, which seems neither here nor there? I can’t be certain, but for the time being, it looks like obligatory extraction of medical information from our bodies, mostly via wearable or mobile sensor devices, followed by widespread publication to one and all. Sort of like open source software development on a grand scale: individuals contribute work for free, and commercial companies figure out ways to monetize the aggregate results by packaging and selling it back to the public, or by packaging the public and selling it to advertisers.
One thing is certain though. We’ve come a long way in health care, and it won’t be much longer before we all internalize the deep value-based understanding of democratized medicine expressed by Susan Reardon, 61, of Kalamazoo, Michigan in the New York Times: “If something catastrophic happens,” she said, “I feel like it’s better just to die.””
Latest posts by Margalit Gur-Arie (see all)
- Democratizing Medicine - January 7, 2016
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- The Effects of Digital Health on the Moral Universe - November 3, 2015