Men are suddenly nomadic gatherers

of knowledge... informed as never before... involved in the social process as never before... [as] we extend our central nervous system globally...

-Marshall McLuhan

CHAPTER ONE

[edit]   ^ Hunters and Gatherers of Medical Information

One morning in 1994, the year Netscape released the first commercial Web browser, the Englewood Hospital library in Englewood, New Jersey, received a most unusual call. The caller identified himself as Dr. Harold Blakely, a local family practitioner. He gave the librarian a bibliographic citation for an article in a medical journal and asked her to make him a copy and to leave it on the table outside the library door, where he could pick it up on his evening rounds. ^[1] This request was not unusual. The hospital librarians frequently left copies of journal articles that local doctors could pick up after the library had closed.

Later that afternoon, the caller phoned again, checking to be sure that his article was ready. But the library's director, Kathy Lindner, took the call this time. Ms. Lindner knew Dr. Blakely. But she did not recognize the caller's voice. After a brief discussion with a colleague, she phoned Dr. Blakely's office. After several minutes a bewildered Dr. Blakely came to the phone. He assured Ms. Lindner that neither he nor anyone in his office had called the hospital library that day.

Half an hour after the library closed that evening, a nervous, well-dressed man with carefully barbered grey hair entered the hospital through a side entrance. Walking with a cane, he passed the elevator, climbed the stairs with some difficulty, and continued down the second floor hallway toward the medical library. As he picked up the envelope with Dr. Blakely's name on it, a hospital security guard stepped out of the doorway where he had been waiting and asked him to identify himself.

Under the questioning of the hospital's security service, he admitted that he was Edwin Murphy, a 58-year-old insurance agent with a chronic hip problem. Dr. Blakely, his physician, had been urging him to undergo a promising new surgical procedure. Mr. Murphy was intrigued but not convinced. He wanted to know more about the potential risks and benefits of the proposed procedure and had repeatedly asked Dr. Blakely to help him obtain a copy of the definitive review article, which had recently appeared in a major medical journal. In spite of his repeated requests, Dr. Blakely had not done so. Finally, in desperation, Mr. Murphy had decided that there was only one way to obtain this vital medical information he needed: He would have to impersonate his own physician.

[edit]   ^ "An Unusual Sloshing Sound Inside her Head"

Fast-forward to five years later. Marian Sandmaier's 16-year-old daughter, Darrah, had been experiencing severe headaches. Her family pediatrician took her vital signs, peered into her eyes, checked her balance and her reflexes, and then shrugged her shoulders, pronouncing the young woman more-or-less healthy. "It may just be sinuses," the doctor observed.

"But what about the pain in her neck? And that odd sound she's been hearing?" Darrah's mother wanted to know. As they had just been explaining, Darrah's headaches had been accompanied by an unusual sloshing sound inside her head. The doctor paused at the exam room door. She shrugged again. "Hard to say," she said evenly. "Call back in two weeks if she's still having problems."

But unlike the unfortunate Mr. Murphy, Marian Sandmaier knew how to use the Internet. And the next day, as she sat down at her computer, she remembered that Darrah had recently started taking an antibiotic for a tenacious skin problem. She logged onto Google and typed in "minocycline" and "side effects." And before she knew it, she was reading the obscure medical details of a rare side effect called pseudotumor cerebri, an accumulation of fluid around the brain that can produce severe headaches, neck pain, and vision problems. One of the symptoms of this rare condition, as she soon learned, is a distinctive and unusual whooshing, sloshing, or roaring sound heard inside the head. Reading further, she discovered that pseudotumor cerebri can damage the optic nerve, producing severe vision difficulties and, in some cases, blindness.

When she had recovered from her initial shock, Sandmaier walked slowly and carefully downstairs. She asked Darrah to stop taking the antibiotic. She then told her husband what she'd learned, handing him a thirty-page printout of her online research. He took Darrah back to their dermatologist, who had prescribed the suspect medication, the next day. The dermatologist dismissed Sandmaier's diagnosis, but she switched Darrah to a new antibiotic nonetheless. When they got home, Sandmaier checked its side effects on Google. The list included pseudotumor cerebri.

Sandmaier took Darrah to a top neuro-ophthalmologist at the University of Pennsylvania, saying nothing about her suspicions. After a lengthy battery of neurological tests and exams, the specialist announced her verdict.

"Your daughter is experiencing a rare side effect called pseudotumor cerebri," she explained. She went on to describe how the buildup in cerebral fluid sometimes reverses itself-if the patient stops taking the toxic drug soon enough. This was apparently what had happened in Darrah's case. In the weeks and months that followed, the girl's symptoms slowly subsided and finally disappeared. Her mother's quick action may have saved her sight.

For e-patients like Marian Sandmaier, the traditional role of unknowing, uncomplaining, passive patient has gone the way of the horse and buggy. She and her e-patient colleagues now routinely turn to the Internet when a medical need arises. They use it to prepare for and follow up on doctor visits. They use online health resources to supplement and double-check the information and guidance their clinicians are able to offer within the constraints of the typical time-pressured doctor-patient encounter. They go online to explore treatment options their clinicians did not mention, to double-check their diagnoses, to learn about alternative or complementary treatments, to compare the treatments their doctors suggest with those recommended by other patients at other treatment centers, and to compare their current clinicians with other providers. Marian Sandmaier is an exemplary but not unusual member of our first generation of e-patients. e-Patients have become an important new resource for healthcare quality. And they now routinely communicate with their clinicians from a newfound position of knowledge, competence and power.

Marian Sandmaier is a medical journalist who served as a reviewer for this White Paper. Her story of online medical sleuthing, from which the preceding summary was adapted (with the author's kind permission), appeared in the Washington Post. ^[3] It won the 2004 American Society of Journalists and Authors Award for Essay Writing. ^[4]

[edit]   ^ Turning to Dr. Google

As of April 2006, 73% of American adults, or about 147 million people, have access to the Internet-a 63 percent increase from the 90 million American adults who had access in 2000. ^[5] Eight in ten internet users have searched for information on at least one of sixteen health topics. A 2002 survey by the American Academy of Dermatology found that patients who needed information about a new medical procedure were twice as likely to go online as to ask their physician. ^[6] If we include teens and children-who turn out to be active users of online health resources ^[7]-the ranks of US e-patients now exceed 122 million.

Much of what we know about e-patients comes from an ongoing series of in-depth e-patient surveys my colleagues and I have conducted at the Pew Internet & American Life Project. ^[8] The health reports, published over the last seven years, provide a good deal of underlying data to support the observations, ideas, trends, and conclusions offered here. ^[9] The free online newsletter Health Care News, published by Harris Interactive since 2001, has been another valuable resource. ^[10] Recent studies in the Journal of Medical Internet Research, the Journal of the American Informatics Association, the International Journal of Medical Informatics, and the British journal, Health Expectations ^[11] have provided additional insights. Other key sources are listed in the Author's Notes. ^[12] But here is a brief summary of what we know so far:

When turning to the Internet for health and medical information, most e-patients operate as "hunter-gatherers," using search engines to find the resources they seek-the "Dr. Google" phenomenon. Here are the kinds of information they search for most frequently: ^[13]

• Age is an important factor. Younger citizens use online health resources more frequently than their older counterparts. ^[14] Of those aged:

• Baby Boomers currently aged 50 to 64 are dramatically more active and assertive as e-patients than those currently aged 65 to 82 (the Silent Generation). ^[15] Thus as tomorrow's seniors develop an increasing number of health concerns, they will take a much more active role in managing their own medical care. Compared to the members of our current generation of seniors, current pre-seniors are:

[edit]   ^ Three Categories of e-Patients

In their insightful 2000 report, "Health e-People: The Online Consumer Experience," ^[17] Cain, Sarasohn-Kahn, and Wayne identified three types of e-patients-The Well, The Newly Diagnosed, and The Chronically Ill and Their Caregivers. We at the Pew Internet Health team adapted this model to reflect our observations, combining the newly-diagnosed with those who are dealing with a complication or reversal for an established diagnosis and including caregivers in all three groups. We currently divide the e-patient population as follows: (1) The Well and their Caregivers ("The Well"); (2) Those facing a New Medical Challenge and their Caregivers ("The Acutes"); and (3) Those with Chronic but stable illnesses and their Caregivers ("The Chronics").

[edit]   ^ The Well

About 60 to 65 percent of e-patients are well. Most members of this group think about their health only occasionally and sporadically.

[edit]   ^ How they use the Internet

[edit]   ^ The Acutes

About 5 to 6 percent of e-patients are currently facing a new medical concern or challenge. Some have recently developed a relatively minor medical condition, e.g., acne, upper respiratory infection, or bladder infection. Others have received a new diagnosis of a more serious condition, e.g., AIDS/HIV, cancer, or diabetes. Some have had a recurrence of a condition that has not been bothering them for a while. Still others are facing a challenging new development for a previously diagnosed condition, e.g., their previous treatment is no longer working, they are experiencing a troublesome side effect or other treatment complications.

[edit]   ^ How they use the Internet

[edit]   ^ The Chronics

About 30 to 35 percent of e-patients have one or more stable chronic illnesses, but are not currently dealing with a pressing short-term medical challenge.

[edit]   ^ How they use the Internet

Many Acutes use the Internet every day. Many Chronics use it several times a month. Most of the Well use it much less frequently, as illustrated by the following answers to a May 2002 Pew Internet & American Life Project report: ^[18]

The circle graphs below demonstrate a model for e-patient traffic on the Net, based on discussions with experts in the field. It is clear that not all e-patients are created equal. A relatively small population of Acutes probably accounts for half or more of all e-patient Internet traffic, while the Well, even though they constitute a majority of e-patients, account for a relatively small portion of online health traffic.

[edit]   ^ The e-Patient Population Their Total Net Traffic

We have found this three-part division particularly helpful when attempting to interpret the results of e-patient surveys, for it can help us understand and appreciate the diversity and complexity of the emerging world of online health resources and the role they play in the lives of contemporary citizens. For example:

•The Well, especially women, often serve as managers for other family members' health concerns. So even though they are only occasional users of online health resources, having access to the Internet makes it possible for them to serve as more effective monitors and caregivers for their family's health concerns. As one e-patient recently noted:

• In addition to managing their own medical conditions, many Chronics spend a great deal of time caring for others. They are often the most active participants in online support communities, where they frequently serve as hosts, advisors, "community elders" and "big brothers/big sisters" to the newly diagnosed. And Chronics are typically the most likely to develop Web sites for their condition, to post content designed to help others, and to respond to the questions of other patients.

• Since their numbers are so small, Acutes can be easily overlooked in surveys of the general e-patient population. Yet Acutes often play a much more important role in generating total Internet traffic (Web searching plus participation in online communities plus health-related e-mail) than their limited numbers might suggest. A broad-based survey might suggest that the "average" e-patient spends about thirty minutes and visits only two to five different Web sites on a typical health search. ^[20] But personal accounts by Acute e-patients suggest that exhaustive searches extending over dozens or hundreds of hours and many days or weeks are the rule rather than the exception When a 35-year-old e-patient named Jack learned that he had tested positive for AIDS/HIV, he devoted himself to an intense series of "wildly generic searches" in an effort to learn everything he could about the condition. ^[21] In one of his early sessions, he found several newsgroups where patients discussed his condition:

• Many Acutes and Chronics use the Internet in considerably more sophisticated ways than many health professionals-and online health researchers-had realized. ^[22] They use e-mail, especially the mailing lists, heavily, but they also use bulletin boards, chat rooms, instant messages and access to medical journals. In the course of their online activity, they may also arrange face-to-face meetings with individuals or support groups.

• e-Patients often perform several different health-related activities within the same online session. When White Paper Advisors John Lester and Dan Hoch and their colleagues at Massachusetts General Hospital asked members of an online support community for neurological conditions (Braintalk) what they had done in their last health-related online session, they found the following: ^[23]

[edit]   ^ The Accepting, the Informed, the Involved, and the In Control

Carina Von Knoop and her colleagues at the Boston Consulting Group have proposed another extremely insightful and useful e-patient typology. According to their model, an e-patient's empowerment level is related to two independent factors-the severity of their condition and their attitude toward their physician:

^[24]

Group I: The Accepting ("doctor-dependent and uninformed") consider their doctors the ultimate medical authorities. They thus rely entirely or almost entirely on their clinicians for medical guidance. They feel that it is their doctor's prerogative to provide any medical information they need and to make all their medical decisions on their behalf. They are comfortable with the traditional paternalistic medical model. Even though they may have Internet access, they rarely go online to seek health information or guidance.

Group II: The Informed ("doctor-dependent but informed") also consider the physician the unquestioned leader of the healthcare team. They rely on clinicians to make many of their medical decisions for them. But they are much more likely to go online to learn more about their condition and its treatments, often doing so just before or just after a doctor's visit. They are occasional users of e-health resources and appreciate the fact that they can find the medical information they seek without "wasting the doctor's time with their questions."

Group III: The Involved ("junior medical partners") regard themselves as respectful junior members of their healthcare team, fairly well informed and somewhat involved. While most would prefer to make their medical decisions jointly, in collaboration with their providers, they are not particularly assertive in standing up to their physicians, and will usually allow the doctor to control the interaction. If they disagree, with their doctor, they may or may not voice their position. And they will usually defer to their physicians' judgment.

Group IV: The In-Control ("autonomous patients") believe in making their own medical choices and will often insist on managing their own medical tests and treatments in the ways they think best, even if their clinicians disagree. They may help (or attempt to help) their clinicians keep up to date on new medical treatments and studies. They may start, manage, or contribute to local support groups, online patient communities, blogs, and other condition-specific websites. They often help other patients, provide feedback (both positive and negative) for their clinicians and treatment centers, and attend meetings and seminars where they can network with the top clinicians and patients from the top treatment centers for their condition.

Von Knoop and her colleagues found that dealing with a continuing or increasingly severe illness tends to drive e-patients from a medically passive to a medically autonomous role. As a person's medical condition becomes more severe, patients and caregivers tend to develop a higher level of medical knowledge, competence and control, adopting a more assertive and autonomous style in their interactions with their clinicians. In fact, patients who must see their physicians a dozen or more times a year are much more likely to be autonomous in their attitudes and online behaviors rather than doctor-dependent. These investigators also reported consistent and predictable variations in proactive vs. passive behavior across different diagnoses: e.g., compared to allergy patients, muscular sclerosispatients were six times as likely to exhibit behavior patterns characteristic of the In-Control group.

[edit]   ^ Internet Use by Specific Patient Populations

Recent studies of Internet use by specific clinical populations of patients suggest that many patients who seek professional medical services also make use of online health resources. A 2002 British study by Tuffrey and Finlay found that 22 percent of the parents in the waiting rooms of several local pediatric outpatient clinics had already done an online search for the problem for which their child was being seen that day, and many had gone far beyond the basics. Percentages of patients who had obtained more information on the following topics were as follows: ^[25]

Tuffrey and Finlay also found that recommendations by clinic staff could be dramatically effective in increasing patients' use of the Internet: 67 percent of parents whose health professionals suggested they search the Internet for information on their child's condition had done so, versus only 20 percent of those whose clinicians had made no such suggestion.

A survey by James Metz and colleagues at the University of Pennsylvania found that among patients at radiation oncology centers in the Philadelphia area, the percentage of patients who had used the Internet to find cancer-related information ranged from 42 percent of patients at an academic medical center to 25 percent at community clinics to 5 percent at the local VA hospital. ^[26]

A 2002 study by Catherine Ikemba and colleagues at the Baylor College of Medicine found that among families at a Houston clinic specializing in the surgical repair of congenital heart defects in children, 58 percent had used the Internet to research their child's medical condition. Of those who had done so, 95 percent characterized the information they found as "helpful" or "very helpful" in understanding and caring for their child's problem. Eighty-two percent said that finding the information they needed was "easy," and 6 percent had developed Web sites specifically related to their child's congenital heart defect. ^[27]

Studies by Sue Ziebland and colleagues ^[28] describe how patients with cancer use the Internet "to gain, maintain, and display familiarity with a remarkable body of medical and experiential knowledge about their illness," thus increasing their sense of self-efficacy, developing effective coping skills in the face of serious illness, and presenting themselves as technically proficient and discriminating users of medical information and professional services. The following comment, from a 50-year-old man diagnosed with testicular cancer ten years before the interview, illustrates how dramatically the Internet has changed the experience of receiving a cancer diagnosis:

[edit]   ^ What e-Patients Like Best-and What They Say is Lacking

Most e-patients appear to be quite satisfied with most aspects of their experiences using online health resources:

A significant percentage of e-patients said that they would have liked certain desired services or features they did not find online: ^[30]

By the early years of the 21st Century, all practicing US clinicians were seeing patients and caregivers who had searched the Internet for medical information. Even though many doctors still overlook or deny its importance, the Internet has already become an important factor in patient care: One e-patient in seven has made an appointment to see a doctor because of information or advice she found online. One in seven has asked the doctor to prescribe a specific medication he learned about online. ^[31] Patients who have searched for medical information online are considerably more likely to consult doctors than are non-e-patients. ^[32] And since their ability to use the Internet makes them feel less dependent, less fearful of the unknown, more capable of asking well-informed questions, and more capable of evaluating the care their medical professionals provide, ^[33] e-patients come to the clinic much better prepared than those who have not used online health resources. As one e-patient explained: ^[34]

[edit]   ^ How Clinicians Have Responded

Back in 1994 Dr. Blakely obviously felt no responsibility for providing Mr. Murphy with the medical information he wanted. This may strike the contemporary reader as callous and insensitive. But it was not at all unusual at the time. For it was only that year that the Medical Library Association's Consumer and Patient Health Information Section first passed a resolution calling on hospital libraries to admit interested patients. As it happens, Ms. Lindner, the medical librarian who uncovered Mr. Murphy's impersonation of his doctor, was the chair of that section of the MLA. She recounted Mr. Murphy's story when she introduced me as that year's keynote speaker.

Painful as it may be for older readers to remember, and difficult as it may be for younger readers to imagine, Dr. Blakely's attitude was the rule, not the exception: "For most of the 20th Century, patients were routinely and systematically denied access to the best available in-depth medical information about their conditions and the medical treatments currently available," says White Paper Advisor Alan Greene, a clinical professor of pediatrics at Stanford and an attending pediatrician at Stanford Children's Hospital. "I was trained never to share the deeper levels of my thinking with patients. And when I took the Hippocratic Oath in 1989, I swore to keep my medical knowledge secret. So until quite recently, becoming a knowledgeable, involved, and medically competent participant in one's own medical care was simply not permitted. And there is still a good deal of physician resistance, resentment, and denial of the inescapable fact that the Internet is helping patients become better informed, more responsible, and more medically competent." ^[35]

The range of clinician response to e-patients' online research efforts was nicely summarized by one participant in a Pew Internet Project e-patient survey who wrote that he had encountered two distinctly different attitudes among his clinicians: One group encouraged his online efforts, supported his desire to become more medically competent, and clearly thought of themselves as "partners in my care." A second group of clinicians was clearly uncomfortable with, and sometimes seemed to feel offended by, his attempts to learn more about his condition via online resources. They clearly preferred, as he put it, the traditional "him chief, me Indian" model of the doctor-patient relationship. ^[36]

Many other e-patients have also observed these two conflicting attitudes among their clinicians. Here are some verbatim e-patient perspectives from a Pew Internet Project e-patient survey: ^[37]

[edit]   ^ Internet Friendly Clinicians

• My own doctor is extremely supportive of me and he is happy to discuss any web-based information I take to him. At times he has been pleased to use my contributions to update his own knowledge base.

• My doctor is delighted, in fact likes receiving printouts of information from the web. He encourages such self-help and research completely.

• Continuously discussing with our oncologist, both treatment plans, and alternative procedures found or discussed on several cancer sites, as well as data mining of the web for such things as clinical trials, and information regarding the course of treatments and their side effects.

• Our doctors are VERY supportive of how proactive we are about our health and like the fact that we use the net to gain additional information and use that information to clarify our questions for her. Our doctor has suggested various web sites to us as well.

• I was referred to [my current support group] by my doctor… I have also started discussing [our support group discussions] with [my other] doctor who is happy that I have found a web site to help me answer any questions I have in detail… my doctor [and I discuss] what I have found… [and] talk about the treatment plans that I then feel [most] comfortable with…

[edit]   ^ Internet Hostile Clinicians

• If I mention… that I read something about [my condition] on the internet, the doctor immediately gets an attitude and tells me not to believe anything I've read on the internet. It doesn't seem to matter that I've gotten this information from (well known) medical journals.

• I took an article I had printed out [from the Internet] to my family practice doctor… and had her react with great anger and throw the paper in the trash.

• One [of my doctors] commented that online information is like scribble on a bathroom wall… [I guess he meant] trash or untrustworthy. I have found the opposite.

• [The] neurologist at my hospital went wild with fury that I would DARE look up my problems on line and try to participate in my own health care…

• My children's GI [doctor] refused to even look at the information I brought in… Most roll their eyes…They [just] assume you have bad information... [without] even seeing your sources.

• [Most doctors] really do like to think they have ALL the answers. This will never change, I am afraid. Countless days, weeks, months of suffering are happening to so many patients because doctors refuse to learn new things from the Internet.

Internet-hostile clinicians sometimes try to discourage their patients from going online. But when they do, one of two things happens. Either the patient leaves the practice and finds a new physician, or the patient goes "underground," continuing Internet research but not sharing it with the Internet-hostile physician. ^[38]

Regardless of their clinicians' response, nearly all e-patients feel that Internet health resources are very helpful indeed. Most e-patients report that their use of the Internet makes them feel more autonomous and capable, not only in their interactions in dealing with the health challenges they face, but also in their dealings with their clinicians and provider institutions. As another e-patient from the same survey explained:

Knowledge is power. [What I find online] helps me to feel prepared to talk with doctors and nurses. I know the terminology and the options.

e-Patients who have "studied up" on their diseases online say they have less fear of the unknown and more confidence in their ability to deal with whatever the future may bring-because of what they have learned during their online health research. ^[39]

[edit]   ^ From "Patients" to e-Patients

The e-patients we've observed have proven themselves so different from earlier generations of patients, so capable of becoming medically competent, and so ready, willing and able to help others-both patients and clinicians-that we've sometimes been forced to ask ourselves whether we can, in good conscience, continue to use the term "patient" in describing them. In contrast to the unfortunate Edwin Murphy, e-patients like Marian Sandmaier are by no means "patients" in the old 20th Century sense. When we invited her to summarize what she'd learned about being an e-patient for this chapter she offered the following:

For many years, I'd considered our doctors the ultimate authorities on medical matters. By contrast, I had long viewed the Web as suspect territory, where a seeker of health information could easily get lost in the tangled thickets of fallacy, zealotry, and self-promotion. But now I think differently about such things.

Even in the midst of my first Web session, long before I knew I had any chance of helping my daughter, I felt a surge of hope. The Internet was far from infallible; some of the sites I visited were confusing, while others contradicted each other on the details. But the Web, at least, was giving me my first vital insights into what Darrah might be up against. And at that point, our doctors, for all their good intentions and years of training and experience, had given us nothing at all.

I truly believe that our doctors wanted to do the right thing. But, like most physicians, they are at their best with the common disorders they see every day. And in today's world of growing healthcare complexity and nanosecond doctors' visits, they barely have time to care for the usual and ordinary disorders.

This means that we-patients, parents, spouses, and family caregivers- must be prepared to understand and manage our own medical care as never before. Becoming health-savvy is no longer just a smart idea. Managing your family's healthcare has become a medical necessity. And while the Internet must be approached with appropriate caution, it can be a vital, life-changing tool in our efforts to make sure that our families get the best possible care.

In the chapters that follow we suggest that like Marian Sandmaier, the millions of online medical consumers who make up our first generation of e-patients have already begun to operate in terms of a new healthcare paradigm, a fundamentally different way of thinking about healthcare that turns many of the previous assumptions of the older, 20th Century medical model upside down.

We believe that the new healthcare trends, patterns and models that are emerging from their experience will prove extremely important to all of us who are concerned with effective healthcare reform. And we suspect that their new perspectives, experiences, and insights will offer us many useful guidelines for lasting and effective healthcare improvement-if we can only learn to listen.

[edit]   ^ References