By Lee Anna Sherman
The classic Norman Rockwell painting “Doctor and Doll” from the late 1920s — a kindly physician in a cozy office listening to the “heartbeat” of a little girl’s beloved toy — looks as quaint today as those ‘50s-era scenes from the movie “Grease,” where teenagers in ducktails and ponytails cluster around a jukebox snapping their fingers to songs like Jerry Lee Lewis’ “Whole Lotta Shaking Going On.” Or the freckle-faced kid on “Leave It to Beaver,” tossing newspapers from a canvas bag slung over his shoulder.
Those halcyon days of trusted family doctors, vinyl discs and hometown papers are being left far, far behind as the world hurtles ahead on ever-faster, ever-smaller, ever more potent computing devices. Just as the revolution in technology has given everyone 24-7 access to The New York Times, a ballooning blogosphere and personalized, portable playlists, so has it given patients and consumers a limitless gateway to health-care resources. Within seconds, we can find news, information and chatrooms on WebMD, the world’s largest commercial health-care website, or up-to-date medical research on PubMed, the open-access site of the National Institutes of Health. We can get data on every disease under the sun. We can access details about an ever-widening rainbow of capsules, tablets, potions, ointments and salves. And we can solicit feedback from fellow sufferers around the globe, sharing symptoms and comparing diagnoses.
Now, instead of blindly following “doctor’s orders,” patients can power up their iPad, Google their symptoms and join a chatroom for a different kind of “expert” opinion — that of ordinary people who have “been there, done that.” They can add a health-related “app” to their smart phone, or post their ailments on Facebook. (A story about a mom whose gravely ill 4-year-old was saved by a Facebook diagnosis went viral on the Internet.) They can ask their doctor for all sorts of new drugs being touted on TV — many of them designed for just-discovered diseases that seem to pop up as fast as new products for personal computing.
In this brave new world of “e-health,” there are bounteous benefits, says Kristin Barker, a sociologist at Oregon State University.
“I think the overwhelming trend of health information on the Internet is positive,” says Barker, who studies the impact of electronic technologies on medical decision-making and power dynamics. “It gives us access to information in ways that are unprecedented. It allows us to be more engaged in our own health-care decisions. It empowers us. ”
Sitting in her third-floor office in Fairbanks Hall, she laughingly admits to typing in her own symptoms on a regular basis, looking for clues to why her head is aching or her energy is sagging.
“I’m a little bit of what’s called a cybercondriac,” she jokes. “I’ll look up two of my symptoms — headache and fatigue — and I’m convinced I have a brain tumor.”
This tendency to inflate or misinterpret ordinary aches and pains is one pitfall of seeking health-care information online. Others include grasping at “disease” models for problems that may, in fact, originate outside the biomedical sphere, and letting anecdotal evidence trump verifiable science.
Illuminating these kinds of hazards is the focus of Barker’s research. While she readily acknowledges that the “doomsday scenarios” of the Internet’s early days — people self-diagnosing with disastrous results, or falling prey to online charlatans — have not materialized to any significant degree, she has identified certain trends that are cause for concern, both for individuals and for society at large.
The Loneliness of Fibromyalgia
A woman called Yolanda posts the following comment in a chat room: “What I find in reading others’ symptoms is that I’m not nuts, and this really is happening to me.” In other words, her pain is not all in her head. And there’s an important subtext: She’s not alone in her suffering.
You can sense the gratitude in her words. You can almost hear her sigh with relief as she types her thoughts into her computer and then clicks “send.” With that tap of her finger, she joins the millions of Americans who are turning to the Internet for an astounding range of health-care needs, from basic information to psychological support. Of the nearly 75 percent of adults who use the Internet, 80 percent have sought health-related information online, the Pew Internet & American Life Project found in 2010. That’s almost 60 percent of American adults. Their search topics range from health insurance and environmental health hazards to drug safety, chronic pain, elder care, memory loss and a host of specific diseases.
Sometimes, this electronic activity results in what social scientists call “illness affiliation” — identifying with others who report similar symptoms. These collectives of sufferers, joined in a spirit of “illness camaraderie,” as Barker calls it, typically push the medical establishment to bless their shared experience with disease status.
Yolanda (a pseudonym) is a case in point. Barker found her on a website fictionally named “Fibro Spot,” a chatroom for sufferers of a modern-day syndrome called fibromyalgia, which afflicts some 6 million Americans. Launched and run by laypeople, Fibro Spot’s homepage was one of the top 50 highest-ranked pages among the 6.7 million hits Barker got when she searched online for “fibromyalgia.”
For 12 months in 2004 and 2005, the researcher “lurked” in the background at Fibro Spot, eavesdropping on the conversations of Yolanda and about 250 other visitors who posted comments to the website. (Although some social scientists question the ethics of online lurking for data collection, Barker argues that if the site is public and doesn’t require a password or membership to join, then it’s open for anyone to read. The known presence of a researcher would alter the dialog, she says, diluting its authenticity and, hence, its value to science.)
Yolanda, having recognized her own plight in the stories of other virtual group members, found affirmation that her cluster of symptoms, ranging from pain and tenderness to anxiety, insomnia and fatigue, must certainly indicate an actual physical illness.
“By writing and reading postings at Fibro Spot, participants transform a collection of symptoms into a unified entity,” Barker explains in the Journal of Health and Social Behavior. “From the point of view of participants, shared symptoms, rather than objective medical evidence, substantiate fibromyalgia as an organic disease.”
Social scientists call this phenomenon “reification” — that is, inventing a real, material thing out of an abstract idea or belief that has been developed socially. In this case, the idea being reified is a perceived illness. But as Barker points out, just because people are reporting similar constellations of physical and psychological symptoms doesn’t mean there’s a biomedical basis for them. The aches and pains may be real enough, she grants. Their origins, however, may also lie in larger social forces that affect human wellbeing.
In the case of fibromyalgia, some research points to a central nervous system imbalance that causes hypersensitivity to pain. But medical science has yet to find a definitive source of illness. Social science, however, has given us perhaps the most telling clues to the disorder, according to Barker. Studies reveal that fibromyalgia affects mostly women (the ratio is nine women to one man), and that there is an overrepresentation of sufferers who fall on the lower rungs of the socioeconomic ladder.
To Barker, these demographics strongly suggest a social problem rather than a medical one. Fibromyalgia, she posits, is a classic example of a phenomenon she has studied extensively throughout her career: “medicalization.” She defines it as “the processes by which an ever-wider range of human experiences come to be defined, experienced, and treated as medical conditions.” In short, we are seeking pills and potions to fix problems whose solutions may well be non-pharmaceutical.
“I argue that the fibromyalgia diagnosis medicalizes a vast constellation of complaints that are associated with social, economic and personal hardships that characterize the lives of many women,” she says. “By focusing intently on gaining medical legitimization, Fibro Spot participants remain largely silent on the social circumstances in which suffering is grounded and experienced.”
Fibromyalgia is just one of the “contested diseases”— medically unexplained syndromes such as chronic fatigue, multiple chemical sensitivity and sick-building syndrome — being driven in large part by online connections among people like Yolanda and her fellow sufferers. Indeed, more than 10 million Americans have a diagnosis for a contested disease. Electronic “connectivity” and the collective validation of “lay expertise” that it fosters is “a potent element in contemporary lay challenges to scientific expertise and will become increasingly influential as online illness affiliation becomes ever more commonplace,” Barker and co-author Tasha Galardi, an OSU graduate student, write in the journal Social Science & Medicine.
Other examples of the “disease du jour” craze, such as “restless leg syndrome” and “low T,” are being propelled by drug companies pushing pharmaceuticals as “cures” for conditions that many physicians chalk up to normal aging, poor lifestyle choices (such as too much sitting around) or even, as Barker puts it, simply “part of the human condition.”
These forces, which Peter Conrad of Brandeis University calls “engines of medicalization,” have shifted over the decades. In the late 19th and early 20th centuries, Barker says, doctors were in the driver’s seat when they redefined natural processes — especially ones related to women’s bodies, such as childbirth and menopause — as needing medical management. By the end of the last century, however, the pharmaceutical industry was the primary driver of the trend toward medicalizing experiences once accepted as normal vicissitudes of living. Riding right alongside the drug companies was the health-care consumer. Then the Internet arrived, creating the perfect platform for ramping up medicalization trends to breakneck speed.
“The transformation of medicine from being primarily professionally directed to being increasingly market-driven places the patient in a new role vis-à-vis medicalization,” Barker asserts, again drawing on the writings of Conrad. “It is increasingly the case that patients contribute to medicalization via their consumer ‘desire and demand’ for medical goods and services.”
When we latch onto organic explanations for troubles that are actually social in nature, Barker says, we lose the opportunity to find and address true root causes. “My concern is how electronic support groups may push for greater medical intervention when it’s not necessary, not effective and not in our best interest, either as individuals or as a society,” Barker says.
Warriors for Mammography
For Yolanda, chatting with her compatriots online gave her the gumption to tell off her skeptical physician: See? I told you so. You’re not so smart after all. Indeed, questioning traditional medical authorities is a hallmark of health care in many of today’s online communities. Barker’s Fibro Spot subjects, who were more than 90 percent female, were uniformly bitter about their physicians’ unwillingness to recognize fibromyalgia as a legitimate disease. “Idiot,” “bitch” and “clueless” were some of the virtual insults they hurled at their doctors while nursing fantasies of slapping them or kicking them in the shins. Their rage, clearly fueled by feelings of powerlessness, practically leapt off the screen. “Find a new doctor!” was their mad-as-hell advice to newcomers.
This rejection of doctors’ expertise and scientific findings, unheard of in the heydays of Rockwell and rock-n-roll, is at the heart of a firestorm that erupted on the Internet in 2009. This “populist uprising,” to use the words of Pew’s Susannah Fox, was triggered when a congressional task force issued new guidelines for breast cancer screening. The panel of independent experts, the U.S. Preventive Services Task Force at the U.S. Department of Health and Human Services, announced that it was rolling back earlier standards for routine screening. For 40-something women without any breast cancer symptoms or risk factors, the panel reported that routine mammograms don’t save lives and may, in fact, be harmful. And for women between 50 and 74, every-other-year scans are adequate, they said, thereby overturning earlier recommendations for annual mammograms.
The reaction from breast cancer survivors and providers was “swift and furious,” reported journalist Jennifer Goodwin on U.S. News & World Report’s “HealthDay” website. Within hours, the Internet was aflame with angry denunciations against the task force, which had based its new recommendations on rigorous, population-level statistical evidence.
This brouhaha “was a great illustration of how two worlds collide,” Barker told Goodwin for the U.S. News article. “On the one hand, you had the science that was saying mammography for women in their 40s might not be as effective as we thought, and on the other hand, you had the personal experiences of the women who believed they were saved by having a mammogram.”
What’s happening, she explains, is “a contemporary clash between scientific and lay ways of knowing.” These “two faces of medicine” (as Harry Collins of Cardiff University and Trevor Pinch of Cornell phrase it) are not only pitting patients against physicians, but also private wellbeing against the public good. In an era of scarce resources, unnecessary screenings shrink access and siphon funds that could be used for more effective, more equitable preventions and treatments for larger swaths of the populace.
“There’s a lot of overuse of health care that is unneeded and, in some cases, harmful,” Barker notes. “We have a right to be worried about not getting care we may need — that’s a real fear and one that should not be dismissed. But we also need to be afraid of getting health care we don’t need. Because somebody is profiting from it.”
The Image of Health
Even as they lose faith in their doctors, Americans are embracing certain medical technologies with the fervor of true believers, Barker says. Our infatuation with imaging machines that peer inside our bodies to see what’s wrong with us — CT scanners, PET scanners, MRIs — has exploded in recent years. High-tech imaging in emergency rooms, for example, quadrupled between 1996 and 2007, according to the Centers for Disease Control (CDC). In doctors’ offices and outpatient clinics, imaging frequency tripled during the same time span, the CDC found.
Mammography, Barker suggests, along with these other high-tech imaging tools, has taken on the status of a “sacred technology” — something revered that cannot be questioned. Following the logic of sociologist Kelly Joyce of the College of William and Mary, who asserts that MRIs and the images they create “serve as totems and sacred objects” in the same way religious rituals and trappings do, Barker says the idea is an extension of the classic analysis in Elementary Forms of Religious Life by Emile Durkheim, who is widely recognized as the “father of sociology.”
Our faith in these technologies can blind us to the findings of science, Barker cautions. Despite the dramatic rise in imaging for injured patients in ERs, diagnosing life-threatening conditions has not improved correspondingly, according to a 2010 Johns Hopkins study published in the Journal of the American Medical Association. As for mammography, research has found that for every cancer detected during routine screenings among 40-something women, nearly 2,000 mammograms are performed. The new guidelines were based on those findings. With no credible evidence linking more imaging with less mortality, the task force concluded that the risks (from radiation, false positives and follow-up interventions) were not justified for healthy, asymptomatic women.
Still, survivors and their supporters were outraged. Statistics, schmatistics! they lashed back. You’re talking about my life, my mother’s life, my sister’s life! Their passionate beliefs became amplified on the Internet.
Barker has enormous respect and empathy for the patients, survivors and consumers she calls “citizen experts” or “lay experts.” Anyone who has undergone breast cancer — or, for that matter, any life-threatening condition — attains a degree of expertise that has value and must not be discounted, she says. But she goes on to caution that when good science sheds light on questionable, wasteful or even harmful uses of medical personnel, equipment and money, connective resistance from stakeholders can be a dangerous barrier to good policy. That’s e-health at its worst. At its best, e-health can be a powerful fulcrum for balancing anecdote and science, private and public, individual and societal toward better health and greater wellbeing for everyone.
“When the Internet first came out,” Barker says, “it was a place where people went to get information. Then it started to be a place where people shared information. Now it’s becoming a place where people create information.”
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OSU’s Linus Pauling Institute maintains the Micronutrient Information Center, a popular online database of research-based information about vitamins, minerals and other micronutrients.
