Medicine’s history is often portrayed as a sequence of discoveries, all made in laboratories. In fact, though, the biggest changes in US medicine over the last 200 years were propelled by forces beyond medicine, specifically, in media. How medicine’s stakeholders communicated in different eras — in formats including medicine shows, newspapers, cars, telephones, medical journals, and TVs — determined what, and how much, was communicated. Where information flows, medicine follows: now social media and biomonitors are ushering in a new age, one of patient generated medicine.
In pop histories, medicine occurs in a vacuum. The last two centuries are portrayed as a self-contained timeline of heroic, rational progress. Brilliant, persistent men (and a few women) conduct increasingly refined experiments. Theories and practices improve. Medical history is made inside labs, clinics and operating theaters; the outside world is silent.
Excerpts from one timeline give an example of this kind of history:
- 1844 Dr. Horace Wells uses nitrous oxide as an anesthetic
- 1847 Ignaz Semmelweis discovers how to prevent the transmission of puerperal fever (wash hands!)
- 1870 Robert Koch and Louis Pasteur establish the germ theory of disease
- 1879 First vaccine developed for cholera
- 1899 Felix Hoffman develops aspirin
- 1922 Insulin first used to treat diabetes
- 1928 Sir Alexander Fleming discovers penicillin
- 1950 John Hopps invented the first cardiac pacemaker
- 1955 Jonas Salk develops the first polio vaccine
- 1978 First test-tube baby is born
Unfortunately, timelines of discoveries don’t account for the most important changes in medicine. No notice is taken of changes in the roles of patients, manufacturers, doctors, promoters, researchers, or changes in what counts as medical knowledge. These changes can only be understood by examining the media through which medical knowledge and relationships were organized and communicated.
Though few people have actually read his books, most college students know how to invoke Marshall McLuhan’ aphorism “the medium is the message” when they’re running out of things to scribble in an essay. The most common interpretation of McLuhan: the tools we communicate with dictate the shape of the content conveyed. Books enforce specialized linear narratives, TV portrays universalist visual poetry.
McLuhan’s aphorism stretches much further, though.
First, McLuhan’s “media” weren’t just mass communications tools like newspapers, TV, movies, books, and radio. (Though pundits, journalists and academics flatter themselves that McLuhan was thinking only about their careers.) In the first paragraph of his epoch-making Understanding Media: The Extensions of Man, published in 1964, McLuhan defines media as “any extension of ourselves.” And his discussion of media in ensuing chapters includes telephones, rifles, sports, cities, comics, theater, clocks, roads, cars, airplanes, and money. Really, for McLuhan, any human construct that plays a role in how people relate to knowledge, the world, or (most importantly) each other, is a medium.
Second, for McLuhan, a medium doesn’t just shape its own contents or immediate environment. Its effects are pervasive, seeping out to influence how we generally live and work. “The medium… shapes and controls the scale and form of human association and action.” We make the tool, then the tool remakes us. When the medium is an ocean, we grow gills and swim; when it’s a sky, we sprout wings and fly. In McLuhan’s metaphorical gender-fender-bender, “man becomes the sex organs of the machine world.”
According to McLuhan, “the effects of technology do not occur at the level of opinions or concepts, but alter sense ratios or patterns of perception steadily and without any resistance.” To liberate “medium” from its common definition as press/entertainment, it helps to invoke the word’s meaning in a biology lab: “a substance, such as agar, in which bacteria or other microorganisms are grown for scientific purposes.” In this sense, we’re bacteria floating in a petri dish, barely able to distinguish ourselves from the medium that supports and nourishes us. Close and ubiquitous, the medium is invisible; its properties become ours.
Considered in terms of periods of ascendent media, the history of US medicine breaks into at least five sometimes fuzzy and often overlapping eras.
In the 18th and 19th centuries, Americans frequented medicine shows for both amusement and health remedies. The horse-drawn entertainers travelled muddy paths between homesteads and villages to sell each proprietor’s own hand-mixed nostrums. (Before launching his eponymous circus, PT Barnum floundered for a few years as a medicine pitchman. He traversed New England peddling Proler’s Bear Grease — guaranteed to grow hair! — from a gaudy wagon.)
Most people relied on home remedies — concoctions literally made and consumed in the home. According to Paul Starr’s history of American medicine, Scotsman William Buchan’s book Domestic Medicine was a favorite resource, going through at least 30 editions. Buchan’s book emphasized diet and simple preventative measures—exercise, fresh air, cleanliness. Buchan was avowedly populist. In his discussion of smallpox vaccination, Buchan argued that doctors often retarded medical progress. In his words, “the fears, the jealousies, the prejudices, and the opposite interests of the faculty [elite physicians] are, and ever will be, the most effectual obstacles to the progress of any salutary discovery.” Doctors should be consulted only in extremis, argued Buchan.
Doctors came in many stripes. After early attempts, state by state, to institute medical licensure at the beginning of the 19th century, a wave of Jacksonian populism wiped away formal accreditation in most states. Anyone could practice medicine. For aspiring doctors, both medical societies and medical schools offered means of establishing credibility with patients. Competing with each other for fees, the two institutions lowered standards and boosted the supply of doctors. Many doctors had second careers. Farming was a popular second job; one doctor moonlighted robbing stagecoaches.
During the Civil War, the adoption in publishing of cheap wood pulp triggered a newspaper boom largely funded by ads for “patent medicines.” Patent medicines accounted for one third to one half of all ads in US newspapers in the nineteenth century. Patent medicines were often national brands, mass produced elsewhere in the country and transported by rail. Many of these brands shed their medicinal claims and, with commercial foundations deeply planted, remain familiar today, most notably Coca Cola, which was originally peddled as an intelligence booster.
Doctoring was still hit or miss. Though the role of microbes in disease was discovered in 1870, most infections were untreatable until antibiotics were discovered in the 1940s. New instruments like the stethoscope, ophthalmoscope, spirometer, electrocardiogram and laryngoscope added “added a highly persuasive rhetoric to the authority of medicine,” but did little to prolong life. Most health gains in the period resulted from advances in public health—plumbing, sewers, nutrition, rising incomes, water purification—rather than intervention by individual doctors.
Before 1900, “many people thought of medicine as an inferior profession, or at least a career with inferior prospects,” according to Starr. The average American doctor earned less than “an ordinary mechanic,” riding miles each day on horseback to see just a handful of patients.
The status of doctors changed dramatically in the first decade of the 20th century, when cars, telephones and urbanization made practicing medicine more efficient and therefore more lucrative.
Some nuggets that help make these changes more tangible:
- Starr reports that “the first rudimentary telephone exchange on record, built in 1877, connected the Capital Avenu Drugstore in Hartford Ct, with twenty one local doctors.” Drugstores had functioned as message centers for physicians, and patients, still phoneless, visited the drugstore to connect with a doctor.
- Doctors were early adopters of automobiles, writes Starr. The Journal of the American Medical Association published several auto supplements between 1906 and 1912. Doctors reported that, compared with a horse, house calls using a car took half as much time and were 60% cheaper. (In Arrowsmith, Sinclair Lewis’ medical satire, the eponymous protagonist’s best friend leaves med school in 1908 to sell cars, and a professor advises that tonsils are best viewed as currency for acquiring an automobile.)
- Population living in a settlements of more than 2500 rose from less than 30% in 1880 to 45% in 1910, notes Starr. In the northeast, population density in settlements soared from 200 people per square mile in 1890 to 450 in 1910. Cities meant both population density and single people lacking family care, which together spawned hospitals, according to Starr. In turn hospitals facilitated specialization, capital investment and knowledge sharing. Hospitals also bolstered the authority of local medical associations, which controlled which doctors could admit patients.
At the turn of the century, many doctors’ incomes doubled, and their social status and political clout climbed accordingly. In step with unionization in other trades, doctors reorganized and strengthened the American Medical Association; its membership rose from 8,000 in 1900 to 70,000 in 1910, writes Starr. Doctors used their new clout to limit competition — halving the number of medical schools, marginalizing non-accredited healers, and lobbying to end direct-to-consumer advertising by patent medicine makers.
Doctors were frequently quoted in Samuel Adam’s famous 1905-1906 series about patent medicines, The Great American Fraud, in Colliers Weekly. The opening paragraph marked the beginning of the end of patent medicines:
Gullible America will spend this year some seventy-five millions of dollars in the purchase of patent medicines. In consideration of this sum it will swallow huge quantities of alcohol, an appalling amount of opiates and narcotics, a wide assortment of varied drugs ranging from powerful and dangerous heart depressants to insidious liver stimulants; and, far in excess of all other ingredients, undiluted fraud. For fraud, exploited by the skillfulest of advertising bunco men, is the basis of the trade. Should the newspapers, the magazines and the medical journals refuse their pages to this class of advertisements, the patent-medicine business in five years would be as scandalously historic as the South Sea Bubble, and the nation would be the richer not only in lives and money, but in drunkards and drug-fiends saved.Samuel Hopkins Adams, Collier Weekly, October 5, 1905
The AMA, in turn, converted the series into a pamphlet, printing and distributing 500,000 copies. (Some newspapers, dependent on patent medicine ads, later refused to run ads for books by Adams.) Public outcry and AMA lobbying led to passage of the Pure Food and Drug Act of 1906, which strengthened the role of the Bureau of Chemistry, precursor of the FDA, in policing claims by drug makers.
Drug makers’ access to consumers through ads was barred as the 20th century progressed. In response, manufacturers focused (and continue to focus) on cultivating doctors as lucrative allies.
At the simplest level, drug companies promote their wares to doctors by advertising in medical journals.
They also pay an army of an estimated 100,000 salespeople to talk with doctors. Drug companies track doctors’ prescription habits using a databased licensed, in part, from the AMA. Using extensive notes and “finely titrated doses of friendship,” the salesforce targets physicians with meals, flattery, honoraria, free samples, sports tickets, drinks, business consulting, support for favorite little league teams, and gifts. Physicians are susceptible to influence “because they are overworked, overwhelmed with information and paperwork, and feel under appreciated.” Conveniently for the drug companies, physicians believe themselves to be righteously impervious to influence, despite abundant evidence to the contrary. Perversely, one Canadian study found that “the more gifts a doctor takes, the more likely that doctor is to believe that the gifts have had no effect.”
Drug companies have also begun funding training for doctors.
Then there are the spokes-doctors (known as speakers) who are collectively paid billions each year, according to amazing data compiled by watchdog Propublica, to explain products to their credulous peers while shadowed by sales reps. One doctor describes being called on the carpet after he deviated from the company-created Powerpoint deck. “The manager’s message couldn’t be clearer: I was being paid to enthusiastically endorse their drug. Once I stopped doing that, I was of little value to them, no matter how much ‘medical education’ I provided.”
Whether it’s relayed by salespeople or spokes-doctors, the ostensible content of drug marketing is published research. This too has been “doctored.” Over time, drug makers have become adept at funding or cherry picking results favorable to their products, even ghost writing articles; by century’s end analysts concluded that, in the words of one former BMJ editor, “medical journals are an extension of the marketing arm of pharmaceutical companies.”
In 1983, the FDA shut down an ibuprofen ad directed at consumers — featuring the company’s suit-clad British CEO and a chalkboard — that aired briefly. Over time, though, court rulings made it clear that drug makers’ First Amendment rights would be upheld if they challenged the FDA.
So, when the FDA changed its rules to allow drug companies to promote products directly to consumers in TV ads without including a detailed list of side-effects, medicine jibed in a new direction again in 1997.
Critics say drug companies increasingly steer away from finding new treatments for illnesses towards “disease mongering,” finding and promoting new disorders, preferably chronic, that can be treated with previously FDA-approved drugs. Expensive “me-too” drugs, patented for a trivial improvement but heavily marketed, also soak up company resources. Companies like IQVIA ($27 billion valuation) mine data seeking new market niches for existing drugs. Shyness gets rebranded as “social anxiety disorder,” treatable with Paxil, a $3 billion/year antidepressant. In progressive revisions of psychiatry’s handbook, the Diagnostic and Statistical Manual, committees of researchers, most of whom are funded by drug companies, both loosened treatment criteria and ramped the number of the psychiatric disorders from 106 in edition 1 in 1952 to 297 in edition 5. Almost all those disorders lack biomarkers or diagnostic verifiability.
Gradually, the white-coated doctors who traditionally served as drug company CEOs have departed, their places taken by suits. Today, just three doctors remain among the CEOs of the world’s biggest 15 drug companies; the rest are former sales reps (3), lawyers (2), economists (2); the remainder started in marketing, biz dev, operations, investment banking, and consulting. (One is a woman, one is African American.)
Trying to put the genie back in the bottle, in 2015 the AMA called for a ban on direct to consumer advertising. No dice, Aladin.
Many health challenges have been met since 1900. Infant mortality down is down 90% and maternal mortality is down 99%, according to the CDC. Vaccines have eliminated smallpox and polio, and slashed measles infections by 99.8%. Many cancers are now chronic conditions rather than death sentences. (Medical triumphs notwithstanding, public health advances get credit for 25 years of a 30 year lengthening in US life spans between 1900 and 2000.)
The challenges that remain are complex and, often, multivariate: Alzheimer’s, Parkinsons, arthritis, and psoriasis; chronic conditions like Diabetes 2 and heart disease, whose etiology is sometimes behavioral; and orphan diseases, guerilla fighters holed up out of sight of medicine’s regular brigades and firepower.
Beyond the obscurity, intractability or complexity of each lingering disorder or illness, the infrastructure of medicine itself has erected barriers to innovating and solving patients’ problems.
Drug and device manufacturers focus on milking their past winners and funding potential blockbusters. The FDA’s rigorous clinical trial requirements make micro-experiments on treatments for orphan disorders risky and uneconomical. Doctors are overworked and demoralized, stretched by demanding corporate bosses and electronic record keeping.
The electronic medical record (EMR) software mandated in 2009 is, surprise, reshaping care. Atul Gawande noted that “a system that promised to increase my mastery over my work has, instead, increased my work’s mastery over me.” More cynically, “EMRs no longer seem to even pretend to be about patient care,” writes Dr. Judy Stone. “The goal is to optimize billing through upcoding. You do that, in part, by ‘documenting’ more, through check boxes and screens that you can’t skip.”
Dyed by medical school and residency and, often, relying on pharma reps for updates, the average doctor is 17 years behind on current best practices. As our understanding of medical conditions becomes more complex, and as the medical organizations that address them also, in parallel, become more complex, effecting change becomes harder and harder. The problem is evergreen:
We are still far from understanding how healthcare practice can be improved rapidly, comprehensively, at large scale, and sustainably. In fact, this observation has been made several times in previous decades.Knowledge translation in health: how implementation science could contribute more
Another era is dawning, that of patient generated medicine. Early in the 21st century, two media of unprecedented volume and reach are leading changes in medicine’s trajectory:
- Social media is empowering patients with niche medical conditions to network and pursue collective action; in parallel, powerful new targeted ad technology makes it possible for companies to target these patients’ needs. These communities range from disease-independent platforms like PatientsLikeMe to Facebook groups for people with migraines or psoriasis. Podcasts and communities run by Peter Attia and Rhonda Patrick are organizing new constituencies for longevity and athletic health. Millions of members of Strava, Peloton, Zwift and the Potterhead Run Club focus on community and healthy competition. (All this is apparently invisible to tech pundits like Kara Swisher, who recently summed up social media as “a chaos machine that ginned up a world of socially acceptable sadism.”)
- Moore’s law is making technology, both hardware and software, exponentially cheaper, smaller and/or more powerful. (One vital AI capacity is doubling every 3 months.) Many people now have up-to-the-minute access to giant volumes of their own health data, with details that are far more specific than those accessed by the average family practitioner. Software (like ours!) uses n-of-1 protocols to do personal tests of drug efficacy, deconstructing drug makers’ efforts to peddle “average effects.” Dr. Eric Topol, director of the Scripps Translational Science Institute, argues that increasing patient access to more data and more insights will end the information asymmetries that generate medicine’s deep seated “extreme paternalism.” He argues that “just as Gutenberg democratized reading, so there is a chance that smartphones will democratize medicine.”
Patient communities may provide a vehicle for evading the gridlock, pulling innovation through that previously needed to be pushed. With patients convening and advocating for themselves, perhaps doctors will transition from being guides to being sherpas.
In some cases, these communities have helped fund research or performed the research themselves. For example, parents of eight children with a rare genetic disorder called NGLY1 coalesced around a single blog post and rallied to coordinate knowledge sharing and research for their children. Parents of two of those patients noted in an article in Nature:
Until very recently, the fragmented distribution of patients across institutions hindered the discovery of new rare diseases. Clinicians working with a single, isolated patient could steadily eliminate known disorders but do little more. Families would seek clinicians with the longest history and largest clinic volume to increase their chances of finding a second case… This challenge can be circumvented by tools already created for and by the Internet and social media.
Nineteen months after the initial report by Need et al.,2 five viable approaches to treatment are under active consideration, thanks to relentless digging by afflicted families. One parent found a compound that seems to have measurably raised the quality of life in one NGLY1 child. Another parent read about a novel (but relevant) fluorescent assay and shared it with the NGLY1 team. The team had not heard about it, but it has become a fundamental tool in the functional analysis of NGLY1. One parent has formed and funded a multi-institutional network of researchers to tackle specific projects. The capabilities of parents and the social media are frequently underestimated; we are here to say: join us!
Sleep apnea communities online provide a case study of how these two burgeoning media categories will alter, for better or worse, medicine’s trajectory. (Sleep apnea is an nightly series of interruptions in breathing that disrupt sleep, elevate cortisol levels and cause headaches and daytime sleepiness. Doctors traditionally prescribe a CPAP, a machine that continuously pushes air into a patient’s nose or mouth, to treat sleep apnea. Meanwhile, medicine’s understanding of a CPAP machine’s actual efficacy remains iffy.)
One product of patient generated medicine is a profusion of products created by companies leveraging new channels to communicate with patients. Because apnea sufferers commune online and can be tracked with ad technologies, companies are targeting them with hundreds of new promotions and products.
Another harbinger of the new age lies in open source software built by and for apnea sufferers. In 2011 one apnea sufferer, Mark Watkins, started working on software called Sleepyhead to decode the data collected by a patient’s CPAP machine.
“As time progressed, I became increasingly disgusted at how the CPAP industry is using and abusing people, and it became apparent there was a serious need for a freely available, data focused, all-in-one CPAP analysis tool” — Mark Watkins, creator of SleepyHead software‘I’m Possibly Alive Because It Exists:’ Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
By reverse-engineering the data locked up on various brands and models of CPAP machines, Watkins gave users a various views of their own data in charts and graphs.
Watkins’ code has been promoted and discussed in numerous social media communities that focused on apnea and CPAPs. More than 78,000 sufferers belong to forum called Apneaboard. On an average night, 2,000 members are posting or lurking. Other boards like CPAPtalk have tens of thousands of members. On Facebook, a group of 1,000 focuses on central sleep apnea, a rare apnea subset. Without these groups’ attention and cheering, it’s unlikely Watkins software would have thrived.
Users say they get far better insight from Sleepyhead than from their own doctors. And academics now rely on Watkins’ code to compare various brands of CPAP machines, brands which try to keep their data in walled gardens.
Ironically, members the CPAPtalk community, agitating for a more aggressive development path, ultimately launched an offshoot of Watkins’ code (technically a “fork”) called OSCAR, and Watkins abandoned his project in early 2019.
A new medium—whether medicine shows, telephones, medical associations or Facebook groups—congregates people and creates an order; it enables and shapes expectations. The new audience inspires or demands new products.
For better or worse, how information flows controls where medicine goes.
- When entertainment and drug making were local, Americans depended on nostrums made at home or sold by horse-drawn medicine shows.
- When railroads and newspapers transformed the creation and promotion of goods, Americans were inundated with patent medicines.
- When doctors rose in status because of telephones, cars, urbanization and unionization, they gained a monopoly medical standards and on dispensing medicines.
- When, in turn, drug manufacturers used research and medical journals as tools to sell to doctors, medicine was steered by what the companies chose to fund and promote.
- When televised drug ads were unleashed, consumers were sold on new sub-ailments. When drug companies co-opted the process of drafting diagnostic manuals, diagnoses multiplied.
- Now social media and biomonitors are ushering in a new age, one in which groups of empowered patients can drive innovation, or quackery, in directions they chose.