The Cure For Cyberchondria
Let’s make fear-free digital diagnosis a reality
I discovered I was dying on a random Tuesday morning at 2 a.m. Why else would my breasts be agonizingly swollen, sore, and squishy with funky little lumps when I was an otherwise healthy 20-something? These symptoms—combined with crushing fatigue—clearly, incontrovertibly indicated a swift-moving form of cancer, at least according to WebMD. As I searched around the health care website, headlines seemed to toggle from “Breast Pain: Should You Worry?” to “Breast Pain: You Should Worry.” Within moments, I’d joined a legion of other infirm insomniacs in their pajamas. Together, we were stoking our health anxiety by searching: Is that headache a brain tumor? Could that toe tingle be a sign of multiple sclerosis?
Twenty years ago, if you had a physical ailment you either made an appointment to visit a doctor or a decision to ignore it and move on. Then WebMD came along, aggregating all matters of medical information online and delivering it for free, sparking a whole new digital phenomenon: cyberchondria. For the millions of people who use the site, it serves as both education and entertainment (let’s be honest, talking yourself into having a potentially fatal illness is the equivalent of telling a scary story in the dark). But WebMD is also empowering, offering insights that can aid with a doctor visit, helping you brush up on relevant medical history and offering smart questions to ask.
For years, we’ve relied on Dr. Google to generate instant results about a troubling health issue from WebMD. Though you may be most familiar with the site’s symptom checker, the homepage now reads more like an online magazine, with feature articles on the perils of using your smartphone in bed and videos about the perks of a one-minute workout routine. WebMD is “expanding into the lifestyle space,” explains editor in chief Kristy Hammam—a transition years in the making, made official this May during the company’s presentation at the Digital Content NewFronts, essentially a debutante ball for online publishers.
About 74 million people turn to the site each month, making it one of comScore’s top U.S. digital properties. According to Adweek, mobile views are up 160 percent from last year, while SimilarWeb, a web analytics and data-mining company, ranks WebMD as the No. 1 most-frequented site for health conditions and diseases, reporting that in May 2016, about three-quarters of the site’s traffic came from organic searches (possibly from people like me, looking up breast pain at 2 a.m.?).
WebMD, which launched in 1996, is two years older than Google, which may explain why other online resources—from geezerly magazines like Prevention to just-the-facts sites for government agencies such as the Centers for Disease Control—can’t compete. Our digital habits are so ingrained that the top search result for my recent search on “heart attack” is a WebMD page—beating out the American Heart Association; the National Heart, Lung, and Blood Institute; the Mayo Clinic; Wikipedia; and The New York Times.
Loyal users like Nicole Horton, a regional director for a behavioral therapy agency for special-needs children, help WebMD retain that high ranking. “Honestly, it’s the first and only site I think of for this specific type of need,” she says.Though she knows people “often joke about the symptom checker, as in, it always leads to bad news,” Horton says it clarified a particularly vexing set of symptoms for her, and when faced with a doctor who told her not to worry, she advocated for herself, armed with newfound WebMD know-how, eventually undergoing a series of tests that revealed she had an autoimmune disorder.
Hammam says that although WebMD hopes to remain a resource for people like Horton, about half of the site’s traffic already comes from “healthy living and lifestyle-related content,” even within its disease and chronic conditions space, where users may come to check on arthritis symptoms but end up spending most of their time reading about “how to fight inflammation and joint-friendly exercises.”
MarketWatch, a financial website, indicates that at $636.4 million, WebMD’s annual revenue was up 10 percent in 2015, with the company projecting another eight to 11 percent increase to $705 million by the end of this year. A move into the lifestyle space is just the latest example of WebMD’s willingness to experiment. In 2005, there was the launch of WebMD the Magazine, a print publication distributed to physician offices nationwide. In 2008, just three months after Apple’s iTunes App Store opened, WebMD debuted its Symptom Checker app, making it one of the first health content providers to embrace the medium.
Today, WebMD is pushing into lifestyle video content while doing everything it can to appeal to women, who make 80 percent of family health care decisions, according to the U.S. Department of Labor. Former WebMD executive vice president and Chief Technology Officer Bill Pence once referred to women as “the Chief Lifestyle Officer[s] in the household.” Adweek reports that the site claims 10.4 million “millennial moms” and 34 million women who have “defined skincare routines” as key groups driving monthly mobile page views. But what about consumers like Horton? Where she goes for specific diagnostic information, how she gets there, and how much it costs may be about to change.
WebMD is a massive operation, churning out enough content to satisfy millions of visitors a day, with the structure in place to evolve as audience and advertisers demand. Ross says that the New York-based company employs more than 120 editors, writers, and producers across several editorial teams who meet each day to plan stories built on market research, user analytics, and observations from health professionals, medical journals, and federal health agencies. Content is vetted based on relevance, clinical significance, and trends. According to editorial policy, every piece of content is run past an in-house group of board-certified medical reviewers before it goes live.
As with a lot of websites, search engine optimization is a big part of the process. Though WebMD chose not to comment on its current SEO practices, a 2012 interview with the Aha Media Group blog features WebMD Senior SEO Manager Tom Roseberry, who explained that SEO specialists are crucial participants in daily content meetings—which address not only the topics to be covered, the experts to consult, and what Hammam separately described as “the takeaway message” for each piece, but also the buzziest keywords for any particular topic. SEO is so crucial to WebMD, said Roseberry, that it occasionally drives the content, rather than the other way around. For example, Roseberry stated that his team found “diabetes diet” to be a popular key phrase based on data from Google AdWords, Google Insights for Search, and internal user data, so a writer was tasked with adding a section about healthy eating to an article for diabetic patients.
In addition to SEO, another constant cog in the steadily grinding machinery of the WebMD editorial review process is ad revenue, which became a source of controversy in April when Vox’s senior health correspondent, Julia Belluz, devoted her column to the influence of advertisers on the trustworthiness of WebMD. She described a “dizzying number of ads for pharmaceuticals, hospitals, and sponsored content brought to me by drug companies.” The site, Belluz wrote, was “awash in advertising that might confuse someone looking for a solution to a health problem.”
These complaints echo Iowa’s Senator Chuck Grassley’s 2010 letter to WebMD, which expressed his belief that a quiz about depression sponsored by the pharma company Eli Lilly (which makes drugs that treat depression) was designed to suggest that anyone who took it was at risk for major depression. And five years before Belluz published her critique, journalist Virginia Heffernan excoriated WebMD as “a hypochondria time suck” and “synonymous with Big Pharma shilling” in The New York Times. In its rebuttal to Belluz’s piece, WebMD pointed out that “advertiser content is clearly labeled as provided by the advertiser to make the sourcing clear to our users.” Editor in chief Kristy Hammam added that, “We go to great lengths at WebMD and we always have, from the time we launched, to make sure we ... have complete editorial independence—our staff that works on editorial content is separate and distinct from our staff that works with advertisers and sponsors.”
“Online symptom checkers operate in an ethical gray area,” says Elizabeth Yuko, Ph.D., a bioethicist with Fordham University’s Center for Ethics Education. “Websites and algorithms are not held to the Hippocratic Oath. Because WebMD is a media organization, rather than an individual medical professional, it is not held to the same legal and ethical accountability as individual practitioners,” such as the American Medical Association’s code of medical ethics.
Some health care providers, like Dr. Nicole Van Groningen, a resident physician in internal medicine at NYU Langone Medical Center, echo that sentiment. She calls WebMD’s direct-to-consumer advertising “the bane of my existence. … I hate that it’s in patients’ faces, especially when they’re trying to get objective and unbiased information about medicine and health.” A recent search for Type 2 diabetes yielded Van Groningen an ad for a “new, fancy, branded diabetic medication.” For her, the peril inherent in this kind of marketing is the potential to bias “people towards asking for and using unnecessary drugs that don’t actually add value to their lives.”
But a number of physicians I spoke with do trust WebMD’s accuracy. Dr. Georges Benjamin, executive director of the American Public Health Association, says his organization frequently and happily collaborates with the site, suggesting experts for advisory boards and as interview subjects. Instead, says Benjamin, the problem is that the content has been “dumbed down,” giving the worst-case scenario as much weight as more innocuous (and common) possibilities. Van Groningen is blunt in her opinion about this: “I’ve encountered a few patients who have had near-meltdowns because WebMD ‘told’ them they could have cancer. In reality, if ‘cancer’ is on any list of possible illnesses, it’s what patients invariably focus on.”
Dr. William Elton, who practices in New York, shares Van Groningen’s frustration. “If you go right now and plug in a dry cough, no other symptoms, for a person aged 25-34, the fourth item down the list is pneumonia. Keep scrolling, and it will list COPD, two types of lung cancer, sarcoidosis, tuberculosis, and cystic fibrosis.” However, Elton doesn’t necessarily see this as willful fear-mongering. “I do understand, from a legal liability standpoint, why WebMD has to list off such serious ailments when you look up any symptom.”
Bioethicist Elizabeth Yuko notes, however, that WebMD is not legally obligated to provide a worst-case scenario, in part because the first, very bold headline in WebMD’s terms and conditions states: “This Site Does Not Provide Medical Advice.” Lawsuits filed against WebMD generally have more to do with patent disputes or financial matters than inaccurate medical advice. For Yuko, the more significant concern is that people sometimes turn to health care sites like WebMD because they can’t afford in-person care. “This in itself is an ethics issue, but one from a societal, distributive justice perspective, highlighting the fact that not everyone has access to effective, affordable health care.”
As WebMD becomes less of a diagnostic resource, a number of health care startups are looking to fill the vacuum. San Francisco-based website Iodine offers medical content, drug reviews, and interactive tools to inform consumers about medications. Co-founder Thomas Goetz says the site differentiates itself from WebMD’s content-driven model by leveraging user data to offer “actionable intelligence personalized to their circumstances.” Iodine is also ad-free, funded by insurers.
“Medicine is a very messy thing. There is a lot of consumer frustration and anxiety, so people go to Google to search for clarity around a diagnosis,” says Goetz. But he believes technology gives us the tools to “create not just information and content but services based on data.” By integrating users’ medical records with the information accessible on the site, “nurses and doctors can have a sense of what is happening with their patients even when they aren’t in office.”
Iodine relies heavily on data from the product labels assigned to each drug by the Food and Drug Administration and on information gleaned from randomized clinical trials. The company also employs a team of pharmacists who help the site’s content creators think through what the average patient will experience when they start a particular medication, like whether or not they might get an upset stomach if they don’t take the drug with food. The information on Iodine is designed to be easy to digest, broken out into bullet points and frequently illustrated. Pages include starred reviews of medications from actual patients.
Some health sites are more interactive. Members of PatientsLikeMe [disclosure: I’ve worked with a research program in business with PatientsLikeMe] log on to forums where they can speak intimately with patients like them. The idea is that user-generated reassurances and advice could lower the risk that cyberchondria will set in. Members can also track their health, chart common symptoms and their severity, or which medications they’ve been prescribed—building a quantifiable framework for fellow site visitors as well as scientists conducting research driven by patients’ experiences and concerns.
CrowdMed also aggregates health information from users, soliciting a group of medical detectives (which, according to the website, includes “licensed physicians, medical students, physician assistants, chiropractors, scientists, naturopaths, and health care aficionados”) to lift their pixelated magnifying glasses over patient-submitted data. Every case is overseen by a licensed physician. CrowdMed offers a range of perspectives and quick response times, though users must pay for monthly membership packages. (A standard package is $149 a month, though monthly elite pricing goes up to $749.)
This, ultimately, may be the real rub, the antiseptic sting to thinking we can seek out health information the same way we look up who won the Oscar for Best Actor in 1964. (Sidney Poitier for Lilies of the Field, by the way.) We want accurate information, we want it right now, and we want it to be easy to read even though it’s about a complex topic. And, oh yeah, we want it for free.
My own story of cyberchondria has a happy ending—I decided to visit my local women’s health clinic, where a kind nurse practitioner smiled through my nervous ramblings, then offered another opinion, which she confirmed via thorough exam, that my breast cancer was actually extra tissue caused by harmless hormones—fluctuating estrogen, nothing more. Years later, I can laugh at that night I spent pacing my apartment, convinced I was desperately ill. Back then, though, I was alone and afraid, certain that any answer, however doom-inducing, was preferable to a nebulous sense of dread. What I discovered online was a good start. But the next phase of digital self-diagnosis can, and will, do better.
Art by FOREAL