In the Kingdom of the Sick: A Social History of Chronic Illness in America

by Laurie Edwards

  The Internet and social media platforms are the direction advocacy is headed, which signals that like it or not, evidence-based medicine is going to need to utilize these same technological capabilities on an even greater scale. If my personal Twitter feed is any indication, hospitals, research organizations, and public health entities have a more visible online presence than even a couple years ago, and the availability of published research online and prepublication previews certainly adds immediacy to the long, behind-the-scenes process involved in academic and research publishing. Roman agrees, adding that some public health programs have health communications tracks and there is a growing effort in training practitioners to do more qualitative research, interviews, and focus groups to widen their skill sets. All the traditional rules of effective health communication, such as professional, tailored writing that addresses its audience appropriately, still apply when we use social media.

  “I always advise health care providers to be part of the conversation so I do think it would help evidence-based medicine to utilize social media more to help combat the myths out there for vaccines, autism and so many other issues in the health care industry,” says Jones. Her website getbetterhealth.com added weekly content features from the CDC in 2011, citing a shared goal of reaching as many people as possible and providing them with scientifically accurate information.

  I can see why Ginger Taylor and the parents and laypeople advocating for what they consider a safer vaccine schedule feel the situation is a “war against patients”: they feel dismissed, even deceived, by the medical establishment that is meant to help their children. There are many crevasses that are likely too wide for the sides to meet, especially when it comes to accepting the conclusions of evidence-based medicine as authoritative and legitimate or not. However, I can’t help but wonder if the divisions wouldn’t be so dramatic and the social media fallout so contentious if, in those initial encounters in exam rooms and hospitals, in those first exchanges of Internet research and queries, patients and parents felt more supported, and physicians felt less besieged. The ingredient that seems to be missing so often is collaboration. It is a new iteration of an all-too-familiar problem. When I consider the Tired Girls, those living in chronic pain, or those living with rare or hard-to-diagnose diseases, the absence—or at the very least, the perceived absence—of collaboration lays claim there, too.

  I mentioned a pendulum swing in terms of parental attitudes toward vaccination, but both examples in this chapter illustrate a broader shift, too. In mid-twentieth-century America, science represented the great savior. Vaccines could prevent the scourge of infectious disease, antibiotics could fend off harmful bacteria, and we felt we had more control over disease and therefore our destinies. By the end of the twentieth century and the first decade of the twenty-first, the science itself came under fire. Our misstep back then was, if anything, an arrogance that elevated the reach of science. Now, even as patients yearn for biological evidence of disease for validation and accommodation, it is not always seen as a sacrosanct seal of proof.

  Chapter 8

  Participatory Medicine and Transparency

  When Dave deBronkart was told he had a rare, late-stage kidney cancer in 2007, his diagnosis had a median survival time of just twenty-four weeks. DeBronkart took to the Internet, scouring research on treatments and connecting with other patients to see how he could survive what was considered an unbeatable disease. Armed with research and a wealth of information from other patients, he brought his results to his treating physician, and together, they came up with a plan.

  He was engaging in what researcher Susannah Fox describes as a “revolution in health care [that] is running along a parallel track, mixing people’s instincts to share knowledge with the social media that make it easy, creating what might be called ‘peer-to-peer healthcare.’”1 Data suggests this peer connection is especially useful for patients with rare diseases. Survey results revealed that those living with rare disease, their own or a loved one’s, have developed keen researching skills to both cope with and minimize the challenges and setbacks associated with rare diseases, forming a “collective pursuit taken on by bands of brothers- and sisters-in-arms who may never meet up in person.”2

  With the support and engagement of his physician, deBronkart used the results of his intensive research and peer feedback in his treatment plan, participated in a clinical trial, and, against overwhelming odds, survived the rare and lethal disease. Clinical trials themselves are an extension of this revolution in health care: technology and social media now play an important role in making participation in trials accessible and possible, and at-home monitoring and electronic data collection make studies on diseases with large patient bases more feasible. These networks are also a natural place to recruit patients and promote ongoing trials.

  DeBronkart is now a frequent speaker as e-Patient Dave at health care conferences around the world; he is an active and respected blogger, and he published his first book, Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and What Healthcare Can Learn from It), in 2010. His experiences embody the spirit of e-patients, those who are “empowered, engaged, equipped, and enabled.”3 He and his colleagues who write and think about participatory medicine want patients to have health care information available and transparent to them—their own health information as well as the research and data that exists virtually. A permanent, portable electronic record of patient health information benefits providers and patients alike and supports collaboration and empowerment. Despite the inherent risks of data breaches and privacy concerns that are inevitable when we shift information online, the adoption of electronic health records is a big—and necessary—part of the evolution of participatory medicine.

  For those with chronic disease, this idea of transparency extends to all facets of their lives as patients. Dr. Kevin Pho, a primary care physician, writes at KevinMD.com, where his popularity has earned him the accolade “the Web’s most influential health care social media platform.”4 As a blogger and contributor to USA Today, the New York Times, and other national outlets, Pho is well positioned to evaluate the influence technology has on the health care system and its users. The past ten to fifteen years have done a lot for patient empowerment in terms of giving patients access to information, though such access raises issues. For example, he mentions that only about a quarter of patients who consult the Internet or print out health information check the sources of that information, so a person or company trying to sell something has potentially as much influence as a reputable source like a hospital or public health organization. The problem is, it isn’t always easy for patients to tell the difference, and, as Pho points out, it isn’t always a priority for the patient to discern that difference.

  “Most doctors and patients are navigating through it and need to proceed cautiously and doctors need to realize the paradigm of the empowered patient,” Pho says. Examples like the e-patient movement “show what potential patients have when they have info and can play an active role,” he says. It is up to doctors not only to accept the empowered patient but to embrace that type of patient. The longer it takes doctors to do this, the wider the distance grows between patient and provider.

  Participatory medicine holds the premise that technology can fundamentally benefit patients and the doctor-patient relationship, and when used appropriately, that information can be the bridge that connects both parties. In a white paper the late Dr. Tom Ferguson was drafting with the “e-Patient Scholars Working Group,” he wrote, “Something akin to a system upgrade in our thinking is needed—a new cultural operating system for healthcare in which e-patients can be recognized as a valuable new type of renewable resource.”5 I appreciate this notion of a renewable resource, of the patient as someone with inherent value that remains and extends beyond an interaction. This could mean taking care of their own disease management, helping or supporting other patients, or participating in clinical trials the way deBronka
rt did.

  Participatory medicine is an inherent extension of what David B. Morris wrote about postmodern illness—how the ways we live and work have shifted from the industrial to the technological, and how that factors in the experience of illness. Narratives take place virtually now, not just in physical spaces of exam rooms and hospital beds, and the conversation is changing because we have different tools at our disposal. The challenge remains how to use those tools most effectively, especially when there is so much information that threatens to distract or misguide us.

  “Culture lives in conversations between people, what they say is possible and not possible … we out here on the leading edge can see that vision that healthcare is about engaging patients, but meanwhile the street reality is where people are not treated well,” deBronkart says. “It is natural when culture is changing for people to get it wrong at first. We start out naïve when something new becomes possible. We gain experience, discover what works, and correct ourselves … When you start talking about something new, people who hear it hear it in their current view of the world.” For many, this context used to be that physicians know everything, patients know nothing, and patients were lucky to even get time with their physician. Culture change is not easy, seamless, or immediate on either side, and simply barging into a physician’s life with e-mail or downloaded information is not an appropriate way to bring about culture change.

  A now famous 2007 Time magazine article, “When the Patient Is a Googler,” tells the story of a surgeon “punting” a patient to a colleague after being subject to a monologue filled with misinformation and apparent self-absorption. Dr. Scott Haig writes, “Every doctor knows patients like this. They’re called ‘brainsuckers.’ By the time they come in, they’ve visited many other docs already—somehow unable to stick with any of them. They have many complaints, which rarely translate to hard findings on any objective tests. They talk a lot.”6 Haig has no problem with patients researching health conditions beforehand; rather, he contends it was the patient’s attitude—too aggressive, perhaps; too confident in medical hypotheses—that was a roadblock in their relationship.

  In 2011, Time ran another article about patients who google health information, but by this point, there was a noticeable shift in perspective. Here, Dr. Zachary F. Meisel opines that it is not productive to debate the practice of searching for health information, since, as we know, searching is so common. Instead, health professionals should ask themselves what they can do to help the process and thereby help their patients achieve better health. The keys are engaging patients in shared decision making, providing them with credible, peer-reviewed health resources, and acknowledging that patients are doing right by getting informed.

  Not every patient who comes in with a stack of printouts is a cyberchondriac, and not every physician who gets frustrated with misinformation is unreceptive to patients’ research. How do we avoid falling into the trap of these extremes? DeBronkart describes the process as more of an awakening.

  “The number one thing is ongoing culture change so that clinicians learn it can be valuable and legitimate; the other side is patients learning how to google more effectively so that what they bring in is less likely to be junk … as we move forward with this social change, ideally patients will learn to be smarter about their research … [with] physicians learning how to coach them,” he says. For example, his primary care physician will ask patients during interviews what kind of information they look at online. When deBronkart finds something new he takes it in and asks what his physician thinks about it, rather than framing it as an indictment that the doctor is negligent or uninformed if he has been doing or not doing a particular thing. His physician might agree, might say avoid the treatment, or might say he is not sure, and they will talk about further strategy.

  The ideas of responsibility and transparency so ingrained in participatory medicine have a far reach: researching and participating in alternative treatments; the direct-to-consumer advertising of pharmaceuticals and the challenges that poses to the doctor-patient relationship; the lifestyle decisions and behaviors that can lead to or cause progression in certain chronic conditions. The patient advocacy movements we looked at in the previous chapter were ones that, however inevitably, often ended up working against the medical establishment. Participatory medicine is a model for moving forward within the medical establishment as empowered patients—and the very tools that make this change possible are the same ones that can distract from this forward motion.

  Options and Agendas: Making Choices in the Digital Age

  The term “patient” itself is as nuanced and revealing as the distinctions we make between terms like “illness,” “disease,” “sickness,” or “disability.” The term “patient” can connote passivity, and not just because of its association with the personal characteristic of being patient. Some argue patients are essentially consumers and that health care is an economic transaction. While that is true, the complexity of health care is not captured adequately if we discuss it entirely in business terms. Fred Trotter, a blogger, information technology specialist, and advocate for patients accessing their health information, points out that information parity makes the patient-as-consumer angle problematic.7 While the move toward more transparency in reporting safety, errors, costs, and other criteria has momentum, when we want more information on, say, a procedure or surgery at a hospital, we have much less immediate and comprehensive data than we would if we were looking to purchase an automobile.

  Trotter’s point resonates. As a first-time mother, I thoroughly researched baby gear, trends, and safety issues. We even had the latest baby-gear issue of Consumer Reports (itself a gift) with us when we registered, only pulling out car seats and high chairs with the highest safety and consumer satisfaction ratings. Yet I had very little data in terms of comparing hospitals or intervention outcomes. Likely I could have gotten at least some of this information, but I didn’t try. Part of it was the belief, right or wrong, that my world-renowned hospital with its equally world renowned neonatal intensive care unit (NICU) and its roster of Harvard-educated specialists and subspecialists represented the best care possible. Part of it was that my own particular pregnancy had a set of risks and variables that most others didn’t because of my rare diseases, so I began to feel like the basic obstetrics numbers didn’t really apply to me—after all, they really hadn’t up until that point.

  What I did have was a considerable amount of information on the risks and potential outcomes of prematurity at every stage from viability through late-term prematurity, and copious information on side effects and contraindications of all the medicines that could possibly be used to treat me during my pregnancy. I had developed many scenarios of how a pregnancy could implicate my health conditions, and vice versa. I had the experiences of a couple of women with PCD who’d been pregnant, and the experiences my specialist had treating one pregnant patient with PCD. I had constant data on the baby’s progress and on my own health status, information gleaned from weekly tests that we used to make decisions at each stage of the pregnancy. I now realize just how much of my pregnancy and our mutual outcomes depended on both collaboration and availability of information. Emotionally, I always felt the presence of this stream of data about our baby and its ability to reassure me, frighten me, or paralyze me, mid-decision. But from an intellectual standpoint, I see how intricately information and survival are linked.

  While patients often have expertise in their own bodies and symptoms, being a “patient expert,” another term under scrutiny, certainly does not imply that physicians and patients have the same expertise and knowledge, making the role of the physician obsolete.8 But a patient with chronic disease often has to play several roles—we do make comparisons and make choices, we are expected to be patient, we are experts in our own manifestations of disease, and, more than ever, we need to be informed collaborators in our health care experience.

  People with chronic illness are avid consumers of infor
mation and products and services, and represent a source of ongoing and often escalating needs. Our weak point, though, stems from precisely this need for continual treatment: the siren’s song of a cure, a seductive phenomenon for patients with chronic illness. We must continuously navigate between hope and optimism, acceptance and adaptation. If we focus exclusively on the promise of a cure, we risk losing sight of what we need to do in the present to best manage our health. If we never indulge in the hope for a cure, we risk burnout, resentment, possibly even despair. Accepting the present reality of our health conditions doesn’t mean giving up on the idea of hope, but acceptance shouldn’t mean we don’t look for ways to improve our situations, either.

  I follow type 1 diabetes bloggers who are on the receiving end of frustrating pitches promising to “cure” their disease, though anyone with credible knowledge of type 1 diabetes knows it is an autoimmune disease in which the pancreas no longer works, meaning patients are dependent on insulin—which is by no means a cure. I regularly get unsolicited pitches claiming a particular expert’s regimen will help me, or this particular homeopathic concoction will make breathing easier. I skim, delete, and shake my head. A cure is not something I think about all that much; I’m focused on living the best life I can with the constellation of problems I have. However, I know that the potential of a cure lives in a laboratory, not in some unsophisticated PR flack’s pitch. The onus is on me to know when to pay attention and when to shuffle such items to my mental spam box. The most serious condition I have is a genetic one, so until someone figures out how to grow cilia in a lab, I don’t put much stock in such entreaties.